tag:blogger.com,1999:blog-68978647147041613872024-02-08T07:12:07.446+01:00Into the unknownA pharmacist by profession, I have tried to describe here the decisions leading up to and my experience of, the "Liberation Procedure", an experimental treatment for Multiple Sclerosis by correcting the venous drainage of blood from the brain and spinal cord. (CCSVI) Living with MS post "Liberation" is really a journey into the unknown.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.comBlogger65125tag:blogger.com,1999:blog-6897864714704161387.post-57295365577144404092012-06-08T13:52:00.000+01:002012-06-08T13:52:39.381+01:00Is it nearly two years?How time flies.<br />
<br />
It was when I came to make my latest entry to<a href="http://www.ccsvi-tracking.com/index.php"> CCSVI tracking </a>that it came to me just how long it has been since my treatment in Poland. I have to make a concious effort to remember what my symptoms were like before, especially the fog that used to envelop my mind and render me hard of thinking.<br />
<br />
Plus the exhaustion that used to overwhelm me without warning. I still get some exhaustion, but nothing like as bad or as often as it was. My left leg declares UDI from time to time, and if you watch me walk you know something is wrong - but hey, I'm walking. I used a wheelchair to get through the airport on the way to Poland, as I couldn't have made it otherwise.<br />
<br />
I still suffer from trigeminal neuralgia - the operation did not touch that, so I'm waiting to have a surgeon stick a massive needle in my face to try and sort it. Meanwhile it's keep taking the tablets.<br />
<br />
My feet are warm. The MS Hug is minimal. So was it worth it?<br />
<br />
For Me? Definitely!<br />
<br />
Would I do it again? In an instant.<br />
<br />
For those considering the treatment, If you can afford it, give it a go.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com8tag:blogger.com,1999:blog-6897864714704161387.post-25899256554493123682011-06-28T21:47:00.000+01:002011-06-28T21:47:30.196+01:00The autoimmune theory --doctors ask, "Have we got it horribly wrong?"<strong>Another interesting research paper dug up by Joan Beal:</strong><br />
<br />
<strong>Have we got it horribly wrong? </strong><br />
<strong>The following is the quote which begins a critical paper from 2002.</strong><br />
<br />
<em>The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd; indeed in view of the silliness of the majority of mankind, a widespread belief is more likely to be foolish than sensible.</em><br />
<em>Bertrand Russell*</em><br />
<br />
<br />
<strong>The Pathogenesis of MS revisted. </strong><br />
<strong>The Full paper available here (this is one to print out and share...)</strong><br />
<strong><a href="http://www.rcpe.ac.uk/journal/issue/journal_32_4/3_pathogenesis_of_MS.pdf" rel="nofollow" target="_blank">http://www.rcpe.ac.uk/journal/issue/journal_32_4/3_pathogenesis_of_MS.pdf</a></strong><br />
<br />
<br />
Here is a breakdown of the paper in an issue of the New Scientist from 2002<br />
<strong><em>New Scientist vol 176 issue 2369 - 16 November 2002, page 12 </em></strong><br />
<br />
It's not surprising there's no cure for multiple sclerosis. Researchers have been studying the wrong disease for over a century, argue a few rebels. <br />
<br />
THE century-old assumption that multiple sclerosis is an autoimmune disease is under attack. Treatments based on the autoimmune theory have failed so miserably, say a group of doctors, that it is time to look for other explanations.<br />
<br />
In a lengthy review to be published next week in The Journal of the Royal College of Physicians of Edinburgh, the three neurologists dispute the received wisdom that the disease wreaks its havoc when immune cells attack and destroy myelin protein, which insulates nerves and helps them conduct signals. Instead, they back an emerging theory that MS is caused when support cells called astrocytes malfunction, perhaps as a result of genetic and environmental triggers.<br />
(NOTE from Joan: One well-documented environmental cause of astrocyte malfunctioning is hypoxia, or low oxygen in the brain)<br />
<br />
Many mainstream MS researchers contacted by New Scientist have poured scorn on the review. But a few agree it's time for a rethink.<br />
<br />
Peter Behan and Abhijit Chaudhuri at the University of Glasgow and Bart Roep of the Leiden University Medical Centre pull no punches in their attempts to demolish the prevailing theory. They begin by attacking the animal experiments that have underpinned the autoimmune theory since the late 19th century.<br />
Back then, researchers discovered that if they injected nerve or brain tissue into an animal, its immune system would attack the nervous system. They called this experimental allergic encephalomyelitis, and before long adopted EAE as the "animal model" of multiple sclerosis.<br />
<br />
This, say the heretics, was a big mistake. In their view, EAE is completely different from MS. "There are huge differences, and they've been skipped over," Behan told New Scientist.<br />
<br />
For instance, EAE either kills animals or leaves them with permanent disabilities. "It doesn't come and go like MS," he says. Animals with EAE also suffer severe nerve inflammation, whereas in MS inflammation is usually mild, if present at all.<br />
<br />
<strong>Despite this, virtually all treatments for MS have been tested on EAE. Little wonder then, says Behan, that the treatments do not work for people. "Not a single human has been cured using these approaches," he says.</strong><br />
<br />
However, steroids and other immunosuppressants do work for a brain disease called acute disseminated encephalomyelitis, a rare result of infections. Behan thinks ADEM, not MS, is the human equivalent of EAE.<br />
He also argues that the fact that<strong> traces of white blood cells are found at some sites of nerve and brain damage in MS patients does not prove they caused the damage. The same traces are found after strokes and neurodegenerative diseases.</strong><br />
<br />
<strong> </strong>Israel Steiner, a neurologist at the Hadassah University Hospital in Jerusalem, agrees that<strong> EAE has blocked "effective progress" for decades</strong>. He thinks alternative theories should be put to the test. "I definitely believe it's high time to reconsider the entire field. It has not led us into understanding the disease or to a better therapy for patients," he says. "Many people in the community who do not have a vested interest in the autoimmune hypothesis share my views, but I'm not sure they would like to step out."<br />
<br />
<strong>Almost 10 years since this review was written, and EAE is still used to create pharmaceuticals for MS. When will this insanity end?</strong>Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com1tag:blogger.com,1999:blog-6897864714704161387.post-13681875160425902972011-06-07T16:22:00.000+01:002011-06-07T16:22:34.565+01:00Information comes to lightI haven't posted in a while, as it seems hard to keep saying, yep I'm still feeling good. But that's the way it is.<br />
<br />
Some days it is hard to remember what it was like to live with MS before my operation.<br />
<br />
I still keep up with all the stuff that appears on the web, though, and thought it would be good to share information that appeared on Joan Beale's excellent Facebook page.<br />
<br />
<div><h2 class="uiHeaderTitle">Research from the 1970s on spinal venous hypertension and myelopathies</h2></div><div class="clearfix"><div class="mbs uiHeaderSubTitle lfloat fsm fwn fcg">by <a href="http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297"><span style="color: #3b5998;">CCSVI in Multiple Sclerosis</span></a> on Saturday, 04 June 2011 at 06:09</div><div class="uiHeaderSubActions rfloat"></div></div><div class="mbl notesBlogText clearfix"><div>Thanks to Mylène Therrien for the following info on research from the 1970s on myelopathy of the spine due to venous hypertension and malformations in the veins surrounding the spine. The 80 patients tested and treated in these studies had paraplegia and injury of the spine due to venous malformations. They were treated for venous stenosis in the <strong>1970s. Dr. Zamboni has referenced this research in his publications, but I hadn't seen these abstracts or understood the history.</strong><br />
Here are the abstracts and links I found from the info given in her posting:<br />
<br />
Acta Radiol Suppl. 1976;347:395-401.<br />
<strong>[Intraspinal venous hypertension due to multiple anomalies in the caval system. A major cause of myelopathies].</strong><br />
[Article in French]<br />
Aboulker J, Aubin ML, Leriche H, Guiraudon G, Ancri D, Metzger J.<br />
<strong>Abstract</strong><br />
Increased venous intraspinal pressure is described as a venous system disease, resulting in numerous unexplained paraplegias and tetraplegias. The chronic venous stasis in the intraspinal plexuses, into which the circulation of the spinal cord is drained, is due to the association of multiple abnormalities (stenoses, compressions, thromboses) on the major pathways of the caval and azygos system. The abnormalities, most of which are not known, are demonstrated by a special procedure, the cavo-spinal phlebography, and some of them are subjected to surgery.<br />
PMID:<br />
207125 [PubMed - indexed for MEDLINE]<br />
<a href="http://www.ncbi.nlm.nih.gov/pubmed/207125" rel="nofollow" target="_blank"><span style="color: #3b5998;">http://www.ncbi.nlm.nih.gov/pubmed/207125</span></a><br />
<br />
<strong> </strong>Acta Radiol Suppl. 1976;347:415-7.<br />
<strong>[Cavo-spinal phlebography in myelopathies. Stenoses of internal jugular and azygos veins, venous compressions and thromboses].</strong><br />
[Article in French]<br />
Leriche H, Aubin ML, Aboulker J.<br />
<strong>Abstract</strong><br />
Increased intraspinal venous pressure, resulting according to ABOULKER in numerous spastic paraplegias and quadriplegias is due to multiple venous abnormalities demonstrated by cavo-spinal phlebography. <strong>The most frequent are stenoses of the internal jugular veins, the left renal, the left iliac veins, the azygos veins and compressions of the innominate venous trunks. These abnormalities cause a permanent stasis in the intraspinal plexuses through excessive supply or insufficient drainage. Out of 80 patients, 60 per cent had at least 2 abnormalities, 38 per cent at least 3 abnormalities.</strong><br />
PMID:<br />
207127 [PubMed - indexed for MEDLINE]<br />
<a href="http://www.ncbi.nlm.nih.gov/pubmed/207127" rel="nofollow" target="_blank"><span style="color: #3b5998;">http://www.ncbi.nlm.nih.gov/pubmed/207127</span></a><br />
<br />
Acta Radiol Suppl. 1976;347:403-13.<br />
<strong>[Cavo-spinal phlebography in myelopathies of venous origin. Application of the method in 115 cases].</strong><br />
[Article in French]<br />
Aubin ML, Leriche H, Aboulker J, Ernest C, Ecoiffier J, Metzger J.<br />
<strong>Abstract</strong><br />
The intraspinal venous stasis, described by ABOULKER as the cause of numerous myelopathies, is due to the addition of multiple venous abnormalities, demonstrated by cavospinal phlebography. The venae cavae and their major affluents and the prespinal system (lumbar and ascending lumbar veins, azygos, hemi-azygos, right superior intercostal and vertebral veins) are explored by catheterization. Cavo-spinal phlebography reveals multiple obstacles and the resulting stasis in the intraspinal plexus.<br />
<a href="http://www.ncbi.nlm.nih.gov/pubmed/207126" rel="nofollow" target="_blank"><span style="color: #3b5998;">http://www.ncbi.nlm.nih.gov/pubmed/207126</span></a><br />
<br />
------------------------------------------------------<br />
<br />
The following quote is Mylene writing about her conversation with Dr. Garel, the IR who performed these procedures, and her translations from the research, originally written in French.<br />
<br />
<em>I spent 45 minutes on the phone with Dr.Garel from St-Justine Hosptial who was the IR who did the catheterization under Dr.Aboulker's study in the 70's. <strong>Interestingly enough. the results and the outcome of that experiemental treatment were exactly what Zamboni is finding</strong>. Here is a part of his work, translated from French to English from me. Note that : First : You should know that I do not know when to use the word " stenoses " vs " stenosis" </em><br />
<br />
<em>The basis for surgical indication : To whom was surgery proposed ? </em><br />
<br />
<em>Any patients who had a major cause of spinal cord problems of unknown origin resulting in progressive disabilities for whom no other therapeutic alternatives were available to them and whose cavo-spinal phlebography examination <strong>revealed multiple abnormalities of the major pathways of the caval and azygous system. </strong></em><br />
<br />
<em>Note that it was a new and an experimental procedure proposed and well-explained to the patients at the time ( in the 1970's). Only those whose paraplegia were progressing and regularly worsening were offered the surgery. </em><br />
<br />
<em><strong>Aboulker and al., were investigating the multiple abnormalities ( stenosis-compression-thrombosis) which reduce or block the circulation in the large veins of the caval system, resulting in spinal venous stasis as a result of excessive supply and inadequate drainage. That would result in impairment in function of the cord, just like any organ when return circulation is chronically impaired.</strong> </em><br />
<br />
<em>HERE ARE THE RESULTS of the cavo-spinal phlebography done on 80 patients who experienced unexplained spastic paraplegias and quadraplegias. </em><br />
<br />
<em>Out of the 80 patients, only 21 patients had the left renal vein investigated. </em><br />
<br />
<em>INTERESTINGLY ENOUGH, ABNORMALITIES WERE FOUND AT ALL LEVELS OF THE VENOUS SYSTEM. The left primitive iliac vein was found to be among the most frequent abnormalities observed. The other ones were stenoses of the IJVs, the left renal vein, the azygous veins and the compressions of the innominate venous trunks. </em><br />
<br />
<strong><em>Out of the 80 patients, 60% had at least 2 abnormalities and 38% had at least 3. </em></strong><br />
<br />
<em>FREQUENCY OF THE ABNORMALITIES: </em><br />
<br />
<em>LUMBAR LEVEL: </em><br />
<br />
<em>ILIAC VEIN </em><br />
<em>- left primitive iliac vein showed recanalized old thrombus in 5% of the patients. </em><br />
<em>- 48% of the patients showed a stenosis of the left primitive iliac vein. </em><br />
<em>(Note that an upstream stasis were always found with those obstructions.) </em><br />
<em>- 34% of the patients had an abnormality of the intraspinal dorsal and lumbar plexuses and an abnormality of the azygous system as well.. </em><br />
<br />
<em>RENAL VEIN: - Note that only 21 patients out of 80 patients had their left renal vein investigated. </em><br />
<em>-47,6% of those 21 patients had a compression of their left renal vein. </em><br />
<em>-30% of the 21 patients had an abnormality in the intraspinal dorsal and lumbar plexuses and in the azygous system </em><br />
<br />
<em>DORSAL AND AZYGOUS LEVEL: </em><br />
<br />
<em>-12% of the patients had either a stenosis or a compression of the arch of the azygous ( " crosse de l'azygos ") and hemiazygous. Those abnormalities resulted in all those cases in a distal stasis in the intraspinal plexus. </em><br />
<br />
<em>AT THE CERVICAL LEVEL: </em><br />
<br />
<em>-A venous abnormality at the cervical level was found in 77% of the 80 patients. </em><br />
<em>- 65% of the 80 patients had a stenosis of the IJV ( again here , don't know when to use stenosis or stenose) </em><br />
<em>( 16% = bilateral stenosis ; 49% = unilateral stenosis where 33% were mainly found on the left side whereas 16% were found on the right side). </em><br />
<em>-12% were found to have a bone or arterial compression of the innominate venous trunks. </em><br />
<br />
<em>ALL PATIENTS WHO HAD AN ABNORMALITY AT THE CERVICAL LEVEL ( IJV stenosis or compression of the innominate venous trunks) HAD AN ABNORMAL SUPPLY OF THE CERVICAL INTRASPINAL PLEXUS WITH GENERALLY IMPORTANT DILATATION OF THE VERTEBRAL VEINS. </em><br />
<br />
<em>SUMMARY: </em><br />
<br />
<em>Out of the 80 patients : </em><br />
<br />
<em>-15% had a normal venous cavo-spinal phlebography.</em><br />
<em>-25% had one abnormality</em><br />
<em>-21% had 2 abnormalities</em><br />
<em>-26% had 3 abnormalities</em><br />
<em>-12% had 4 and more abnormalities. </em><br />
<br />
<em>Note that those percentages are lower (less important ) than reality because the roots (" les racines") of the azygous were seen only 41 times out of 80 and because the left renal vein was investigated in only 21 patients out of 80 patients. So when the roots of the azygous and the renal vein were investigated, abnormalities were found in 50% of the cases ( one time out of two). </em><br />
<br />
<strong><em>TO CONCLUDE: </em></strong><br />
<br />
<strong><em>PERMANENT STASIS IN THE INTRASPINAL PLEXUSES THROUGH EXCESSIVE SUPPLY OR INSUFFICIENT DRAINAGE CAUSED BY ABNORMALITIES WERE FOUND AS FOLLOW: </em></strong><br />
<br />
<strong><em>- Out of 80 patients, 60% had at least 2 abnormalities whereas 38% had at least 3 abnormalities.</em></strong><br />
<em>--------------------------------------------------------------</em><br />
<br />
thanks, Mylène . I'm floored. This is not new...<br />
The researcher, Jose Aboulker (1920-2009) was a pioneer of neurosurgery and neurology in France and a renowned anti-Nazi partisan.<br />
<a href="http://resources.metapress.com/pdf-preview.axd?code=h23w2x34q73kt946&size=largest" rel="nofollow" target="_blank"><span style="color: #3b5998;">http://resources.metapress.com/pdf-preview.axd?code=h23w2x34q73kt946&size=largest</span></a><br />
<br />
Dr. Laurent Garel is a research and interventional radiologist in Montreal (he must have been a student in the 1970s!)<br />
<a href="http://www.chu-sainte-justine.org/research/chercheurs.aspx?ID_NOUVEAU=2394215&id_page=2432&id_menu=2429&all=y" rel="nofollow" target="_blank"><span style="color: #3b5998;">http://www.chu-sainte-justine.org/research/chercheurs.aspx?ID_NOUVEAU=2394215&id_page=2432&id_menu=2429&all=y</span></a><br />
<br />
<em>wow.</em><br />
<em>Joan</em><br />
<br />
<br />
<div class="photo photo_none"><div class="photo_img"><img class="img" src="http://a8.sphotos.ak.fbcdn.net/hphotos-ak-ash4/249691_10150200529612298_110796282297_6840583_6174058_n.jpg" /></div></div></div></div>Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com8tag:blogger.com,1999:blog-6897864714704161387.post-9843823776450211642011-03-31T09:57:00.000+00:002011-03-31T09:57:13.117+00:00Amazing videoI saw this clip on a friend's blog, Enjoying the Ride, (see links below at the side) and thought it was worth sharing with you:<br />
<br />
http://www.ted.com/talks/view/id/1104Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-85298650365956189772011-03-29T09:09:00.000+00:002011-03-29T09:13:54.458+00:00Downside to treatment?I guess this is a downside, but one I'll happily live with for all the gains I've had.<br />
<br />
My hay fever is back. Every spring, when the daffodils began to flower, I would get snuffly and snotty. Then MS bit, and the hayfever went away. Suppose my immune system had bigger fish to fry. But this spring, lo and behold the hayfever is back along with the daffodils.<br />
<br />
Perhaps my immune system has given up on attacking my nerves for a while.<br />
<br />
This does sit well with some of the more recent research done, and if more widely experienced, could perhaps be another piece in the jigsaw that is MS. I'm not going to quote all the references in here - there are plenty in the side pages, and it would take too long, but if someone needs some guidance where to look, leave me a question in the comments, and I'll help you out.<br />
<br />
Basically, the immune activity kicks in after the lesions have started to form, as a result of hypoperfusion, iron deposition and cell death in the CNS. This in turn is triggered by the blockages in the veins draining the brain and spinal chord. Remove the blockages and the hypoperfusion goes away, inflammation and immune activity in those new areas of damage also cease.<br />
<br />
So while treating CCSVI does not remyelinate pre-existing areas of damage, and does not remove long term symptoms experienced by PWMS, it does holt damage being done now, which may not show up as full blown lesions on MRI, and so those with active disease and in the relatively early stages should get the most relief.<br />
<br />
Is hayfever a downside then? Or a sign that , at least for now, the damage in my brain has stopped?<br />
<br />
I would love to know.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-65512058526767739162011-03-23T13:21:00.000+00:002011-03-23T13:21:48.819+00:00how fragile is confidenceIt is now six months since I had my procedure, and life is pretty good. MS still reminds me that is has not given up on me; I have TN (trigeminal neuralgia) unless I take my meds regularly, and my left hand and foot occasionally play up.<br />
<br />
But overall, the difference is still incredible. From considering wheelchairs to being able to walk without a cane. Getting psyched up to never being able to work again, to coping with a 25 hour week.<br />
<br />
So it was a bit of a shock to the system when I had a fall at the weekend. <u>Not</u> as a direct consequence of MS, but I caught my feet in a cable on the floor as I turned, and hit the deck like someone poleaxed.<br />
<br />
So now my body is bruised and battered, but not as much as my confidence. Even now waves of misery and uncertainty pass over me, as I fear that I have lost all that I have gained. Logically, I know that this was the type of fall anyone could have had, but what has logic ever got to do with the fears that lurk in the soul?Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com3tag:blogger.com,1999:blog-6897864714704161387.post-56170448260276601162011-03-14T09:45:00.000+00:002011-03-14T09:45:01.478+00:00When people I know go for the procedureHolding my breath again this week and crossing every toe and finger as <a href="http://www.enjoyingtheride.com/2011/03/ccsvi-treatment-lets-give-this-one-more.html">another person I know</a> goes for venoplasty. It seems about two thirds see improvement, sometimes dramatic, as I did, and can be seen in the many YouTube videos across the net.<br />
<br />
But what about the other third? I must say I am struck with a form of guilt when I hear their stories. Here I am, so much better than before, and they get nothing. I hope at least that this information will finally crack the enigma that we call MS.<br />
<br />
Maybe this is not just one disease, with one set of causes, but a number of different ones, that result in similar signs and symptoms. Getting a diagnosis of MS can be a long and drawn out process for some, as all the alternatives are checked and discarded. For others it seems swift and relatively straight forward. For some, <a href="http://www.wheelchairkamikaze.com/2011/02/misdiagnosis-of-multiple-sclerosis-and.html">the diagnosis is never clear or straightforward.</a><br />
<br />
So each time I hear of someone I know undergoing CCSVI investigation and treatment, I hope they have the same form of MS as me and all those other responders out there. But sometimes it doesn't work, and all they are left with is hope.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com8tag:blogger.com,1999:blog-6897864714704161387.post-60326407883648348782011-03-07T10:56:00.000+00:002011-03-07T11:15:16.916+00:00Upset and disappointedBack in November I took part in a recording for a BBC Radio programme about CCSVI. It was never broadcast. I was annoyed, but ce la vie. I felt it was a shame because there were some doctors interviewed to give a balanced and scientific basis to both sides of the argument.<br />
<br />
Today I find out why. On the BBC News website is an announcement of a forthcoming programme about CCSVI labelled <a href="http://www.bbc.co.uk/news/health-12637191">Concerns about Controversial MS Treatment. </a><br />
<br />
It is obviously not intended to be balanced, as is clear from the language used. Doctors "not licenced to practice medicine", another " reported to the doctors' watchdog, the General Medical Council".<br />
<br />
Stents are described as little metal tubes and any improvements are "apparent" or "placebo". An "undercover reporter" is scanned and is diagnosed with CCSVI. This is intended to discredit, but shows lack of reasearch by the programme's staff, as nowhere is it claimed that CCSVI is <u>only </u>found in MS patients, rather that it is found at a signifiantly higher percentage than in the rest of the population.<br />
<br />
<br />
Meanwhile Biogen report 10 more cases of PML and four more deaths from the approved drug Tysabri, between January 7th and February 2nd.<br />
<br />
I had hoped for better from the BBC. This is tabloid journalism, poorly researched and out for a juicy headline.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com8tag:blogger.com,1999:blog-6897864714704161387.post-51846173801075879462011-02-25T00:32:00.000+00:002011-02-25T00:32:17.976+00:00That wonderful word, normal.What a wonderfully diverse disease MS is. Just when you think you have a handle on what is going on with your particular brand, it throws you another surprise into the mix.<br />
<br />
That is why I am so grateful for, and in some ways scared by, what my CCSVI treatment has done for me.<br />
<br />
What brought this to a head was a combination of entering my plus five months data on <a href="http://www.ccsvi-tracking.com/">CCSVI Tracking </a>and emails from the <a href="http://euromedicpoland.com/index.php?setlang=eng">clinic in Poland</a> asking about my six month follow up with the doctors there. I sometimes wonder where the time has gone, and then realise it has gone in both living a normal life (wonderful word that, normal) and in waiting for the other shoe to drop.<br />
<br />
I am back at work, although not full time. I drive myself about. I can walk to the local shop and back without needing to sleep for 6 hours to recover. I am exercising at <a href="http://www.chesfielddownsgolf.co.uk/showpage.asp?p=620">a gym</a>, under the watchful eye of my wonderful personal trainer. I feel like I have my life back.<br />
<br />
But I still have those dratted holes in my brain, and some intentional tremor in my left hand and leg. Enough to remind me that the MonSter may not have released its grip on me entirely. And I still do the MS person's check on waking - which bits are/are not working today.<br />
<br />
To be given a gift , like I have, is to live with the fear that tomorrow may be the day it is all taken away again. It is not placebo, the effects have lasted too long for that. But it may just be the longest and best remission of my life. Amazing how many other people experience remission, starting on that particular operating table.<br />
<br />
<br />
So tomorrow morning, I will wake up and face the day. All the more thankful for what I have, because I know what it is to lose it.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-52405306608030219532011-02-21T15:44:00.000+00:002011-02-21T15:46:02.765+00:00Women and MSCurrently the diagnosis rate for women with MS is about twice that of men, although 100 years ago it was about even. So why this change?<br />
<br />
One factor is the rapid decline in maternal mortality. Researchers estimated the number of women dying around the world in ,2008, during or shortly after pregnancy, to be 342,900, down from 526,300 in 1980. The historical level was about 1 in 100 births.<br />
<br />
As MS tends to be diagnosed later in life, how many women died before their disease became apparent?<br />
<br />
For those of us interested in CCSVI, it is interesting to note that the rate of Chronic Venous Disease (CVD) is also twice as high in women as in men.<br />
<br />
<br />
Here is Dr. Ferlini's genetic study, where she found CCSVI and MS share copy number variations on the same HLA locus region that is associated with MS.<br />
<a href="http://www.fondazionehilarescere.org/pdf/ferlini-etal-2010-final.pdf" rel="nofollow" target="_blank">http://www.fondazionehilarescere.org/pdf/ferlini-etal-2010-final.pdf</a><br />
<br />
Maybe someone will join up the dots one day............................Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com1tag:blogger.com,1999:blog-6897864714704161387.post-47728726708942780872011-02-16T21:15:00.000+00:002011-02-16T21:15:38.597+00:00Dietary Supplements and MSWith thanks to some very well informed MS friends here is an extensive list of supplements used to help patients with MS. It includes references to clinical studies, so that you can follow up with your own research.<br />
Even though these supplements are available over-the-counter, please consult with your doctor before taking any of them, or starting any form of restricted diet.<br />
<u><b>Low-Fat Diet</b></u><br />
<br />
<u><i>The Swank Diet</i></u><i>: </i> Between 1949 and 1984, 150 MS patients were directed to consume low-fat diets. Their intake of proteins, fats, and oils was documented, and subsequent disabilities and deaths were noted. The research team found that people who consumed a low-fat diet had less disease progression and increased survival than their counterparts who ate a higher-fat diet (Swank, 1991).<br />
<br />
<u><i>The Best Bet Diet:</i></u> Ashton Embury in his various esays , booklets and on-line presentations details a form of diet, which, along with suitable supplements, has become known as the Best Bet diet. For more detailed information see the <a href="http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/39">Multiple Sclerosis Resource Centre</a>.<br />
<br />
The link between MS and the types and amount of dietary fats consumed has also been established through epidemiological analysis. A high or increased intake of saturated fats, animal fats, and dairy products (another source of saturated fats, except in the case of low-fat dairy products) is associated with an increased risk of developing MS (Agranoff, 1974; Lauer, 1997; Schwarz, 2005; van Meeteren, 2005). <br />
<br />
<u><br />
<b>Vitamin D </b></u><br />
<br />
The incidence of MS increases the farther one lives from the equator, where exposure to ultraviolet light is at its greatest. Growing evidence linking vitamin D and the risk of MS may begin to explain this latitude phenomenon. Studies show that higher sun exposure during childhood and early adolescence is associated with a reduced risk of MS.<br />
<br />
A 2004 study found that women who took vitamin D supplements were 40% less likely to develop MS than women who did not take supplements. (However, this study did not provide enough data to conclude that vitamin D has a beneficial influence on ongoing MS.) (Munger, 2004.)<br />
<br />
A 2006 study analyzed blood serum stored from military personnel during their service, and found that those with higher levels of vitamin D were at lower risk for later developing MS. This study adds to growing evidence that vitamin D may help protect against the development of MS. (Munger, 2006)<br />
<br />
In June 2007, the Canadian Cancer Society said that based on current research, adults should consider increasing their daily dosage of vitamin D. The society said Canadians should now consume 1,000 IU of vitamin D daily during the fall and winter months, in consultation with a health-care provider.<br />
<br />
In a small 2009 study, 25 people with relapsing-remitting multiple sclerosis were given a high dose of vitamin D (14,000 international units, IU, each day for a year) and were compared to 24 people who took a lower dose of vitamin D (1,000 IU a day for a year). In the high-dose group, 16% of the people had a relapse, compared to 40% in the low-dose group. As a bonus, the high dose group reported no side effects from the vitamin D supplement. <br />
<br />
<i>Cautions: <br />
• Do not take vitamin D if you have hypercalcemia. <br />
• Consult your doctor before taking vitamin D if you are taking digoxin or any cardiac glycoside. <br />
• Only take large doses of vitamin D (2000 international units or 50 micrograms or more daily) if prescribed by your doctor. <br />
• See your doctor frequently if you take vitamin D and thiazides or if you take large doses of vitamin D. You may develop hypercalcemia. <br />
• Chronic large doses (95 micrograms or 3800 international units or more daily) of vitamin D can cause hypercalcemia. </i><br />
<br />
<b><br />
<u>OMEGA-3 FATTY ACIDS</u></b><br />
<br />
There is considerable statistical evidence that the incidence of MS varies in countries where the diet differs. <br />
<br />
Evidence shows that a higher consumption of polyunsaturated fatty acids, especially omega-3 fatty acids, is associated with a decreased risk of MS and slower disease progression in people who have milder forms of the disease (Agnello E et al 2004; Bates D 1990; Swank RL et al 1990; Swank RL 1991; Zhang SM et al 2000). Increased consumption of omega-3 fatty acids may moderate the course of the disease. (Agnello, 2004; Ferrucci, 2005; Nordvik, 2000; Shapiro, 2003). <br />
<br />
A 1989 study looked at the long-term effects of omega-3 fatty acids in the treatment of MS, and concluded that there were improvements in the treated group when compared to the control group in terms of duration, frequency and severity of relapses, and the number of patients who either improved or remained unchanged. (Bates, 1989.)<br />
<br />
A 2005 study investigated the effects of dietary fat consumption on the course of disease in patients with RRMS. Researchers found that a low-fat diet supplemented with omega-3 fatty acids had moderate benefits in terms of physical components of health status and quality of life. Patients also experienced lower relapse rates while on the supplemented diet than they did in the preceding year (Weinstock-Guttman, 2005).<br />
<br />
There are three major types of omega-3 fatty acids that are ingested in foods and used by the body; they are also available as over-the-counter dietary aids: <br />
<br />
-- <b>alpha-linolenic acid (ALA)</b>, an organic compound found in many vegetable oils, seed oils, nuts and green vegetables; <br />
<br />
-- <b>eicosapentaenoic acid (EPA),</b> is obtained by eating oily fish or fish oil—cod liver, herring, mackerel, salmon, menhaden and sardines; <br />
<br />
-- <b>docosahexaenoic acid (DHA),</b> is obtained from fish oils; DHA is actively promoted by manufacturers as a food additive. There is less DHA available in the average diet than formerly, due to cattle being taken off grass and fed grain before butchering; likewise, there is less in eggs due to factory farming.<br />
<br />
<i>Cautions: <br />
• Consult your doctor before taking EPA/DHA if you take warfarin . Taking EPA/DHA with warfarin may increase the risk of bleeding. <br />
• Discontinue using EPA/DHA 2 weeks before any surgical procedure. </i><br />
<br />
<u><b>OMEGA-6 FATTY ACIDS</b></u><br />
<br />
Omega-6 fatty acids are a family of polyunsaturated fatty acids. Blood tests have revealed that MS patients have lower levels of omega-6 fatty acids than people without MS.<br />
<br />
-- <b><u>Linoleic acid</u> </b>is an essential omega-6 fatty acid, found in high concentration in sunflower and safflower oil as well as in lower concentrations in most other vegetable oils; also available as a dietary supplement. <br />
<br />
Studies, beginning in the early 1970s, suggest that diets high in linoleic acid can be helpful for MS patients. Patients who supplemented their diet with linoleic acid had longer remissions and reduced the severity of their attacks. A 1984 study reported that some MS patients have abnormally low levels of linoleic acid. (Homa, 1984.) <br />
<br />
In another 1984 study, the results of several clinical trials of linolenic acid supplementation for the treatment of MS were evaluated by meta-analysis. The conditions of 87 patients with MS and 85 normal control subjects were assessed for neurological changes over 2.5 years. Patients with low levels of disability at the beginning of the study had a smaller increase in disability over the study period than did the control subjects. In addition, linoleic acid was found to reduce the severity and duration of MS episodes in patients at all levels of the disease (Dworkin, 1984). <br />
<br />
The best natural sources for linoleic acid include <b>black currant seed oil </b>and <b>borage oil,</b> both available as dietary supplements. <b>Sunflower seed oil</b> is also rich in linoleic acid and can be used in cooking. <br />
<br />
-- <b><b><u>Gamma-linolenic acid </u></b><u>(GLA) </u></b>– Another omega-6 fatty acid. Ordinarily, the body makes all the GLA it needs from linoleic acid. But this conversion is occasionally interrupted or inhibited, especially in inflammatory diseases. (Horrobin, 1997, 2000; Jamal, 1994; Kidd, 2001.) Defects in conversion may have a genetic basis, which is thought to predispose some people to inflammatory conditions (Horrobin, 2000).<br />
<br />
GLA quells inflammation by competing with pro-inflammatory arachidonic acid. In animals with MS, GLA-fed animals fared significantly better than did control animals (Harbige, 2000). <br />
<br />
GLA is available directly from <b>evening primrose oil, black currant seed oil, </b>and <b>borage oil.</b> Most of these oils also contain some linoleic acid.<br />
<br />
<i>Cautions: <br />
• GLA should be taken with food. <br />
• Individuals undergoing treatment for cancer should not take GLA (or any other supplement) except under physician supervision. <br />
• Consult your doctor before taking GLA if you take warfarin. Taking GLA with warfarin may increase the risk of bleeding. <br />
• Discontinue using GLA 2 weeks before any surgical procedure. <br />
• GLA can cause gastrointestinal symptoms such as nausea and diarrhoea.</i><br />
<br />
<b><u>ANTIOXIDANTS</u></b><br />
<br />
Antioxidants neutralize naturally-occurring but harmful chemicals known as free radicals. MS patients tend to have abnormally low levels of certain key antioxidants. (Mai,1990; Mazzella, 1983; van Meeteren, 2005).<br />
<br />
Supplemental antioxidants support cellular antioxidant defenses by scavenging free radicals; reducing inflammatory cell responses by interfering with gene transcription, protein expression, and enzyme activity; and by chelation of metals. Antioxidant therapy in animals with MS has yielded decreases in clinical signs of the disease (van Meeteren, 2005). <br />
<br />
-- <b><u>Selenium, Vitamin C and Vitamin E</u>:</b> <br />
<br />
In a small 1990 study, patients with MS were given an antioxidant mixture containing 6 mg of sodium selenite (equivalent to 2740 micrograms of elemental selenium), 2 grams of vitamin C, and 480 mg of vitamin E, once a day for 5 weeks. Although glutathione peroxidase levels were initially lower in patients with MS than in normal control subjects, after 5 weeks of antioxidant therapy, levels of this antioxidant increased 5-fold; side effects were minimal (Mai J et al 1990).<br />
<br />
Selenium is available as a dietary supplement, but the best source of natural selenium is <b>Brazil nuts</b>. <br />
<br />
<br />
<b><u>N acetyl cysteine (NAC)</u></b><br />
<br />
NAC is a potent antioxidant. NAC can increase glutathione levels, which increases antioxidant capacity.<br />
<br />
MS patients tend to have abnormally low levels of certain key antioxidants, such as glutathione peroxidase (Mai, 1990; Mazzella, 1983; van Meeteren, 2005). Glutathione is available in supplement form, but it is poorly absorbed. A better strategy for increasing the body's supply of glutathione is taking NAC. (Arfsten, 2004; Kidd, 2001). <br />
<br />
In animals with MS, NAC has been shown to reduce nitric oxide production in brain-supporting tissues and reduce clinical symptoms and microscopic evidence of brain cell injury and inflammation (de Bustos, 2000; Gilgun-Sherki, 2005; Syburra , 1999).<br />
<i><br />
Cautions: <br />
• NAC clearance is reduced in people who have chronic liver disease. <br />
• Do not take NAC if you have a history of kidney stones (particularly cystine stones). <br />
• NAC can produce a false-positive result in the nitroprusside test for ketone bodies used to detect diabetes. <br />
• Consult your doctor before taking NAC if you have a history of peptic ulcer disease. Mucolytic agents may disrupt the gastric mucosal barrier. <br />
• NAC can cause headache (especially when used along with nitrates) and gastrointestinal symptoms such as nausea and diarrhoea. </i> <br />
<br />
<br />
<b><u>Coenzyme q10</u></b><br />
<br />
Coenzyme Q10 (CoQ10) is another antioxidant of potential usefulness in treating MS and, while there is some debate, its levels may be low in patients with MS (Syburra, 1999). Although CoQ10 has not been investigated specifically for the treatment of MS, it is generally recognized as safe, well tolerated, and potentially useful in the treatment of neurodegenerative disorders. <br />
<br />
CoQ10 is a naturally occurring, lipid-soluble antioxidant that serves as a co-factor in the mitochondrial respiratory chain. As an added bonus, CoQ10 is capable of regenerating the antioxidant capacity of spent vitamin E in the body. Decreased levels of CoQ10 are associated with many disease states, including heart disease, cancer, and neurodegenerative diseases (Bonakdar, 2005; Siemieniuk, 2005). <br />
<br />
DOSAGE: “I would not feel comfortable recommending to my patients to take more than 50 mg or maximum 100 mg of CoQ10 a day, unless for the temporary treatment of a medical condition.”<br />
<br />
“The daily dosage of CoQ10 in healthy individuals is generally in the 15-30 mg range and is taken for general well-being. In patients with heart disease or other chronic conditions, a minimum of 100 mg a day has been used in numerous clinical trials. A dosage in the range of 600-1200 mg is being used in the on-going study on Huntington’s disease, supported by the National Institutes of Health.”<br />
<br />
“If on a statin drug, 60 to 90mg per day is suggested.”<br />
<br />
<i>Cautions: See your doctor and monitor your blood glucose level frequently if you take CoQ10 and have diabetes. Several clinical reports suggest that taking CoQ10 may improve glycemic control and the function of beta cells in people who have type 2 diabetes. </i> <br />
<br />
<br />
<b><u>Lipoic Acid</u></b><br />
<br />
Lipoic acid, <b>also known as alpha-lipoic acid</b>, is a sulfur-containing fatty acid. It is found inside every cell of the body, where it helps generate the energy that keeps us alive and functioning. Lipoic acid is a key part of the metabolic machinery that turns glucose (blood sugar) into energy for the body's needs.<br />
<br />
Lipoic acid is an antioxidant, but unlike other antioxidants, which work only in water or fatty tissues, lipoic acid is unusual in that it functions in both water and fat. By comparison, vitamin E works only in fat and vitamin C works only in water. This gives lipoic acid an unusually broad spectrum of antioxidant action. <br />
<br />
Lipoic acid has been studied specifically in MS. Known to cross the blood-brain barrier and to penetrate cellular mitochondria, lipoic acid decreases the activity of intercellular adhesion molecule-1, a small molecule that plays a role in the genesis of MS. It is believed that ICAM-1 and other adhesion molecules are responsible for allowing certain pro-inflammatory immune system cells, namely T-lymphocytes, to cross the blood-brain barrier, paving the way for induction or exacerbation of damage to neurons (Biernacki, 2004; Cournu-Rebeix, 2003; Dedrick, 2003). <br />
<br />
In experiments on rodents with MS, lipoic acid produced significant reduction of demyelination and reduced the infiltration of inflammatory T-cells across the blood-brain barrier (Marracci, 2002, 2004; Morini, 2004). <br />
<br />
In 2005, in a small clinical trial of lipoic acid in the treatment of patients with MS, thirty-seven patients with MS were randomly assigned to receive various doses of lipoic acid (up to 2400 mg/day) or placebo. Lipoic acid was generally well tolerated and reduced ICAM-1 levels, as well as interfered with T-cell migration into the central nervous system (Yadav, 2005). <br />
<br />
There are <b><u>two types of Lipoic acid</u></b>: the <b>synthetic S form</b>, and the <b>natural R form</b>. R-Lipoic acid is much more potent (2 times on average) than commonly sold synthetic lipoic acid which contains both the R and S forms of lipoic acid. The S form is chemically the mirror image of the R form of lipoic acid and cannot be used by the body, hence it is useless. <b><u>Make sure you buy the R form</u></b>. Fifty mg of R-Lipoic Acid is equivalent to 100 mg of synthetic lipoic acid. <br />
<br />
<i>Cautions:<br />
<br />
• Lipoic acid may lower blood glucose levels. Consult your doctor before taking lipoic acid if you have diabetes and glucose intolerance; monitor your blood glucose level frequently.</i><br />
<br />
<br />
<b><u>Acetyl L-carnitine</u> (ALCAR)</b><br />
<br />
ALCAR is a derivative of amino acids, naturally produced by the human body. Meat, poultry, fish, and dairy products are the richest sources of L-carnitine. Commercially, it is often marketed as a "life extension" supplement. <br />
<br />
A 2004 study showed that acetyl L-carnitine was more effective than amantadine (a prescription drug) for the treatment of fatigue in MS (Thomassini 2004). (Dosage for this trial was 1g twice daily.)<br />
<br />
However, the percentage of LCAR that is absorbed when taken via oral supplementation is much lower than that from food sources. In one study, it was shown that approximately 20% of orally supplemented L-carnitine is absorbed, with a bioavailability of roughly 15%, as compared to a bioavailability of between 60% and 75% when absorbed from food.<br />
<i></i><br />
<b><u>Vitamin B12</u></b><br />
<br />
Vitamin B-12 is naturally found in foods of animal origin including meat (especially liver and shellfish) and milk products.<br />
<br />
When a patient is B-12 deficient, injection is sometimes used if digestive absorption is impaired. There is evidence that injection may not necessary with modern high potency oral supplements (such as 500 to 1000 mcg or more). <br />
<br />
Vitamin B-12 is important for the normal functioning of the brain and nervous system and for the formation of blood. Vitamin B12 plays a key role in the generation of myelin. MS and vitamin B12 deficiency share remarkably similar characteristics, occasionally rendering correct diagnosis difficult (Miller, 2005). Some physicians prescribe vitamin B12 supplements for MS patients. <br />
<br />
A 1992 study showed that MS patients often have abnormally low levels of vitamin B12 in their cerebrospinal fluid and/or blood serum (Reynolds, 1992). <br />
<br />
In a 2001 study, MS patients who received vitamin B12 supplements reportedly experienced consistent clinical improvements in their symptoms (Kidd, 2001). <br />
<br />
In a 2002 study, researchers investigated the effects of 6 months of vitamin B12 injections (1 mg/week) on 138 MS patients. Researchers concluded that the patients improved after starting vitamin B12 injections (Wade, 2002). <br />
<br />
<br />
<b><u>Glucosamine</u></b><br />
<br />
Glucosamine, an over-the-counter natural product that has been shown to help with arthritis, may also provide some relief to MS patients. <br />
<br />
In a 2005 study, neurologists at Jefferson Medical College, using the mouse model of MS, found that doses of glucosamine similar to those taken for osteoarthritis dramatically delayed the onset of symptoms, and improved the animals' ability to move and walk. The animals’ spinal cords and found less inflammation and “demyelination” in those that were given glucosamine. (Rostami, 2005.)<br />
<br />
<br />
<b><u>N-acetylglucosamine (GlcNAc, or NAG)</u></b><br />
<br />
Previous studies which suggested that glucosamine has some value in the treatment of MS (see above), led Michael Demetriou and colleagues at the University of California, Irvine, to investigate a similar but more potent compound called N-acetylglucosamine (GlcNAc).<br />
<br />
In a 2007 study using the mouse model of MS, NAG inhibited the growth and function of abnormal T-cells that incorrectly direct the immune system to attack specific tissues in the body, such as brain myelin in MS. <br />
<br />
Defects on cell-surface sugars may promote the short-term inflammation and long-term neurodegeneration that occurs in the central nervous system of MS patients. <br />
<br />
<i>Demetriou found that the dietary supplement N-acetylglucosamine (GlcNAc), which is similar but more effective than the widely available glucosamine, corrected defects in protein glycosylation in cells and inhibited inflammatory demyelination in mice. The new study opens the possibility that metabolic therapy with GlcNAc may also prevent neurodegeneration.</i><br />
<br />
The findings suggest that NAG may be useful as an oral therapy to correct neurodegenerational defects and to treat both short-term and long-term symptoms of MS. (Demetriou, 2007.) <br />
<br />
<b><u>Inosine</u> </b><br />
<br />
People who get gout almost never get MS. A 1998 study showed that MS and gout are almost always mutually exclusive; people almost never have both diseases. In a review of 20 million Medicare and Medicaid patient records, researchers discovered almost no overlap between multiple sclerosis and gout. (Hooper, 1998.) This may have something to do with uric acid. <br />
<br />
Uric acid is a chemical created when the body breaks down substances called purines. Purines are found in some foods and drinks, such as liver, anchovies, mackerel, dried beans and peas, beer, and wine. Most uric acid dissolves in blood and travels to the kidneys, where it passes out in urine. <br />
<br />
If the body produces too much uric acid or doesn't remove enough if it, disease results. Abnormally high levels of uric acid in the body result in a number of disorders including hypertension, cardiovascular disease, renal disease, and gout. A number of studies have shown that MS patients have been shown to have abnormally <i>low</i> levels of uric acid (Peng, 2007 and others). <br />
<br />
MS exacerbations are often treated with intravenous methylprednisolone. A 2002 study showed that methylprednisolone therapy increases serum uric acid levels, suggesting that increasing the uric acid concentration may represent one of the mechanisms of action of methylprednisolone in MS patients. (Toncev, 2002.)<br />
<br />
Another 2002 study showed that uric acid levels in MS patients correlate with activity of disease and blood-brain barrier dysfunction. (Toncev, 2002.)<br />
<br />
A 2008 study noted that “a reduced uric acid concentration has been linked to multiple sclerosis, Parkinson's disease, Alzheimer's disease, and optic neuritis. Historically, uric acid has been considered a marker of these disease states. Recent studies, however, have provided evidence that uric acid may actually play a role in the development or progression of such diseases.” (Kutzing, 2008.)<br />
<br />
Uric acid can't be administered orally, because it is degraded by the gastric process before it reaches the bloodstream. However, uric acid levels can be raised by the oral administration of <b>inosine,</b> an over-the-counter supplement.<br />
<br />
Two different mechanisms of action have been proposed. First, inosine produces uric acid after ingestion, which is a natural antioxidant; second, it has been shown to induce axonal rewiring in laboratory animals with stroke and spinal cord injury<br />
<br />
In a 2006 study, MS patients treated with inosine were found to have a lower relapse rate than non-treated MS patients. (Toncev, 2006.)<br />
<br />
Another 2006 study suggests that therapeutic strategies aimed at raising serum uric acid levels may have a neuroprotective effect on MS patients. (Koch 2006.)<br />
<br />
In a 2009 study, oral administration of inosine was used to raise serum levels of the natural peroxynitrite scavenger UA in 16 patients with RRMS during a 1-year randomized, double-blind trial. Results showed that increased serum UA levels correlated with a significant decrease in the number of gadolinium-enhanced lesions and improved EDSS. <br />
<br />
The only side-effect correlated with inosine treatment was kidney stone formation in 4/16 subjects.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com64tag:blogger.com,1999:blog-6897864714704161387.post-78056755762581910872011-02-14T21:42:00.000+00:002011-02-14T21:42:07.261+00:00MS and the sense of selfOne of the most common phrases I hear from people who have had the CCSVI treatment is "I have my life back". This, along with the sensation of gaining some control back.<br />
<br />
This made me begin to think about what MS does to us. MRIs give a picture of lesions in our brains and spinal chords, while functional testing by neurologists and others can measure what is happening to our physicality, but what about "US".<br />
<br />
The betrayal by our bodies, which cease to obey even the most basic commands, leaves us uncomfortable in our own skins.<br />
<br />
But it is not just this that causes our loss of self. Cognitive failure of varying degrees of severity also chips away at our sense of who we are. The fog that fills our brains displaces all but the most rudimentary thoughts.<br />
<br />
It can be deeply distressing for a journalist to lose the grasp of language, to struggle to find an appropriate word. The struggle of a former professor to organise his or her thoughts, to apply lessons learned, to come up wth alternate solutons to problems. To be unable to read a simple story, because each sentence disappears as soon as it is fnished. The parent who can no longer help their child wth the simplest of homework.<br />
<br />
With that loss of function comes a decided feeling of loss of self., wth all the distress that entails.<br />
<br />
This, the hardest thing to quantify, may be one of the most distressing effects of this disease.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-42450376677472584882011-01-25T21:31:00.000+00:002011-01-25T21:38:53.249+00:00I survived the gymDespite last minute trepidation and a strong desire not to go, I made it through my first gym session today. I started by using an MS knowledgeable trainer, to make sure <a href="http://www.msforum.net/Site/ViewPDF/ViewPDF.aspx?ArticleID=FD9AA175-21D5-4C06-879F-9C053841B5FF&doctype=Article">I did things properly and got the most out of it</a><br />
<br />
The trainer was worth every penny, as he took me through the exercise machines and stretches, working out what was best for me. Although it wasn't a full workout, I was getting tired by the end. But we have set out a detailed plan for me, including stretches to do at home, in between gym sessions. Having someone there , as well as helping me do things correctly, helped keep me going rather than giving up and going home.<br />
<br />
Once I had showered and dressed, I did feel quite energised, although I think I'll sleep well tonight. This seeems to fit in with current findings. Read more<a href="http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/692"> here</a>.<br />
<br />
Although in the past it was thought that exercise was not suitable for MS patients, because of the fear that it might bring on an exacerbation. <br />
<br />
But <a href="http://www.sciencedaily.com/releases/2010/02/100218141813.htm">latest information</a> is that exercise may actually help protect our brains, reducing inflammation and loss of white matter. Which also fits with the CCSVI hypothesis, as exercise will improve circulation in the brain.<br />
<br />
So roll on Friday and my next session.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-62996865229805552662011-01-24T10:02:00.000+00:002011-01-24T10:02:51.238+00:004 month updateStill feeling the benefit, so I guess no re-stenosis, and no placebo effect.<br />
<br />
It has been a while since I posted because I have been caught up in ordinary life. Yes, folks, you did read ordinary. Such a plain word, but so magical for a person with MS. How many times have we uttered the cry "I just want to be normal", only to find ourselves adapting to our new normal. Which is not what most people would consider normal at all.<br />
<br />
Christmas and New Year have come and gone, along with the snow and really severe frosts. Although Winter may still have some surprises up her sleeve. But the first snowdrops are poking their heads out of the ground. Spring can't be that far away. <br />
<br />
We were looking at some photos of being out in the snow last night. Last years ones were obvious - they were the ones where I was using a stick.<br />
<br />
I am logging my status on <a href="http://www.ccsvi-tracking.com/">CCSVI tracking</a> and looking forward to my six month check-up in Poland. One thing that friends have commented on is that the tracking site tends to show a big initial improvement, then a gradual decrease as time goes by. I wonder though if this is a genuine deterioration, or others like myself find it harder and harder to remember what their pre-operation state was like.<br />
<br />
The act of recording makes you focus on every little thing, and what would have been ignored in the general scheme of things assumes an overly great significance. It is not always MS.<br />
<br />
But I have still come so far. I work 20-25 hours a week. I can read and comprehend something first time through. I have signed up at a gym with a personal trainer who knows about MS. No stick. My bladder functions like it belongs to an adult not a toddler. I get tired and sleep normally. I don't need medication just to get through a day.<br />
<br />
Thank you Dr Zamboni.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-79834211279211343472010-12-15T12:16:00.000+00:002010-12-15T12:16:00.479+00:00three months on and keeping wellKeeping well MS wise at least! I've succumbed to the winter coughs and colds doing the rounds, but in a funny way it's good to feel bad like anybody else. It's part of being "normal" again.<br />
<br />
So here's an update of how my symptoms are:<br />
<br />
Bladder is stable and medication not required to keep it under control. Pre-operation I took tolterodine (Detrusitol XL) but this is definitely no longer needed. My bladder functions completely normally.<br />
<br />
Mood is much better. Again, prior to my angioplasty I took citalopram, but having gradually reduced the dose, I find I am OK without it.<br />
<br />
Balance is about 90%, but even without MS it was never perfect, and my hand-eye co-ordination was so-so. Most of the time I'm OK, but if tired or as recently when running a temperature, it is a little bit off. I can stand on one leg and walk heel to toe without falling over. Couldn't do either pre-angioplasty.<br />
<br />
I'm still not 100% confident/comfortable going up and down stairs, but I don't know if that is more mental than physical. I used to use some of the spasticity in my leg muscles to help me stand and I still have some residual stiffness and soreness which is especially noticeable on getting out of a chair and using stairs. I don't know if this is permanent or will gradually wear off.<br />
<br />
<br />
Walking is good. My gait is not perfect, and I need to stop every so often for a rest, but I can go places. Before my operation, from the house to the car, or across the road felt like the height of my ambition, but now a stroll in Kew Gardens is an option again, even if I have to pause for a sit down now and then.<br />
<br />
Best of all is the cog-fog. My brain is clear and I can hold a thought in my head. I don't struggle for words like I did. MS fatigue is a thing of the past, and I no longer need modafinil just to get through the day.<br />
<br />
My own estimate is that I have regained about 80% functionality compared with pre-MS. So do I consider my operation a success? Oh yes! Would I go through it again if my symptoms return? In an instant.<br />
<br />
I know that MS can grant remission, but I have not been like this for years, so in the words of the Mythbusters, CCSVI is plausible.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com3tag:blogger.com,1999:blog-6897864714704161387.post-79498340075323276762010-12-10T19:32:00.000+00:002010-12-10T19:32:58.223+00:00Cog Fog - how do you explain it?One of the joys of life after "liberation" is not having to live with cog fog (loss of cognitive function) any more. This feature of MS is one of the invisible symptoms of MS, yet is responsible for many people having to give up work and start claiming disability benefits. I was often asked to describe what it was like, and I found it hard, not least because I was in the grip of cog fog myself.<br />
<br />
Here I am looking back on it and still finding it hard to describe to anyone who has not had this most frustrating of conditions. One way was to liken it to the fuzzy head you get with a bad cold or flu, but I find now, having such a cold, it is not a good analogy.<br />
<br />
Yes, my head can feel stuffed with cotton wool , but at least I am aware that "I" am still in there. With cog fog,often "I" was no longer able to be sure where "I" was. Like some fairytale character, I would wander through dense forests, through great blizzards of thick snow, searching for the castle where I and my life had been hidden. Or I could wade through waist high swamps that seemed to fill my skull, looking for the right word or phrase, only to hold my "prize" up in the air, and find it is not the one I sought.<br />
<br />
Hence the "game" of MS charades, as we flail around wildly, trying to indicate what it is we are seeking. Or the strange language our close friends and family learn to interpret, getting the milk from the fridge when we ask them to get the cat from the washing machine. All the while retaining sufficient self awareness to realise that something is wrong, is it any wonder that people with MS feel frustration and anger and loss of self as well as bodily function?<br />
<br />
So there is a common feature of post operative reports given by people on the various fora and websites. "I have my life back". "I have my self back"<br />
<br />
There has been some debate about whether or not "the liberation procedure" is a sufficiently scientific label for the variations on venous angioplasty being carried out. But from the point of view of this person, I have been set free to live my life again.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-54121829263022219192010-12-09T00:25:00.001+00:002010-12-10T00:11:08.898+00:00Notes on the CCSVI vs autoimmune theories part 2<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554378/pdf/clinexpimmunol00048-0161.pdf">Myelin antigen reactive T cells in cerebrovascular diseases</a><br />
<br />
<a href="http://stroke.ahajournals.org/cgi/content/full/41/10_suppl_1/S75">Modulation of Post-ischaemic immune response in stroke</a><br />
<br />
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2816867/">Stroke and the resulting predisposition to develop immune reaction to myelin basic protein</a><br />
<br />
<a href="http://recovery.tamu.edu/journal%20club%20articles/Popovich03.pdf">The "auto-immune" reaction of T-cells in spinal chord injury</a><br />
<br />
<a href="http://www.blogger.com/%20http://www.pnas.org/content/101/37/13660.full">Carbon monoxide poisoning, hypoxia and changes to myelin basic protein and immunological response</a><br />
<br />
<a href="http://stroke.ahajournals.org/cgi/content/full/41/10_suppl_1/S75">Post-ischaemic immune response to stroke</a><br />
<br />
<a href="http://www.blogger.com/goog_1915354318">Neurogenic bladder and demyelination <span id="goog_1915354314"></span><span id="goog_1915354315"></span></a><a href="http://www3.interscience.wiley.com/journal/119413159/abstract">following brain hypoxia caused by a car accident</a><br />
<br />
<a href="http://www.ijoem.com/article.asp?issn=0019-5278;year=2007;volume=11;issue=2;spage=80;epage=82;aulast=Bhati">Short term symptoms suggestive of demyelination following carbon monoxide poisoning </a><br />
<br />
So damage the brain, provide some kind of inflammatory insult,and immune reaction to myelin follows.<br />
At last we begin to see which is the chicken and which the egg, and that this response is not unique to MS. Also, we see that short term oxygen deprivation of the brain causes some of the common symptoms of MS.<br />
<br />
So what could cause periodic or progressive inflammation of the central nervous system, and hypoxia of the tissues? CCSVI? Removing the obstruction causing CCSVI does appear to resolve many of the symptoms of MS.<br />
<br />
<span class="postbody">If MS is a chronic, ongoing hypoxic insult to the brain and spine, due to CCSVI...it could be exacerbated by any event when further lessens oxygen to the brain...high altitude, viral or bacterial infection, vasoconstriction. More lesions are formed, the damage continues. <br />
<br />
The hypoxia created by CCSVI is chronic, ongoing, but much slower than what happened in the last two studies above. It takes many years to develop damage. Restore oxygen to the brain and spine, and healing and remyelination should take place.</span><br />
<br />
<span class="postbody">It may also shine a light on the much debated hyperbaric oxygen treatment. So long as it at a sufficient level for adequate penetration of the brain and spinal tissues, CCSVI may explain why some MS patients received benefit, especially in reduction of neurogenic bladder.</span><br />
<span class="postbody"></span><br />
<br />
On a totally different note, could CCSVI in the non-MS population explain the incidence of ME (<b>Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome)? Migraines? Bends in seemingly healthy SCUBA divers with "nominal" dive profiles?</b>Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-54495675222095586762010-12-06T16:20:00.000+00:002010-12-06T16:20:54.842+00:00The dream of myelin repair is a step closerA new study offers yet another glimmer of hope for people with MS, that their body may be able to repair damage to the myelin coating on their nerves by stimulating the brain's own stem cells.<br />
The results come from <a href="http://www.mssociety.org.uk/go.rm?id=25378">the Cambridge Centre for Myelin Repair</a> and the <a href="http://www.mssociety.org.uk/go.rm?id=28657">Edinburgh Centre for Translational Research</a>. <br />
<br />
<b>What did the study show? </b>Researchers looked at ways that the brain's own stem cells repair myelin in people with MS. Using samples from the MS Society's <a href="http://www.mssociety.org.uk/go.rm?id=25388">Tissue Bank</a>, they identified a specific type of molecule called RXR-gamma, which appears to be important in promoting myelin repair. They found that targeting RXR-gamma in rats encouraged the brain's own stem cells to regenerate myelin. <br />
<br />
The work was published in the journal Nature Neuroscience and led by Professors Robin Franklin from Cambridge University and Charles ffrench-Constant from the University of Edinburgh. <br />
<br />
<b>What does this mean for people with MS? </b>RXR-gamma is already widely studied in cancer biology and a drug already exists that targets the molecule in cancer. Researchers are now looking at how this might be used as an MS treatment, but this is early work. <br />
<br />
<b>What happens next? </b>The next step is working towards setting up clinical trials to establish whether existing treatments will be safe and effective in people with MS. Before anyone dashes off to their neurologists, trials could take 5 years, and a treatment 15 years away.<br />
<br />
But, combined with the possibility of CCSVI to stay progression and buy us the time to wait, things could be looking good for us all.<br />
<br />
http://mstrust.org.uk/news/msinthemedia.jspSue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com2tag:blogger.com,1999:blog-6897864714704161387.post-68723747965743716482010-12-05T22:24:00.000+00:002010-12-09T00:45:03.221+00:00MBP reactive T cells NOT unique to MSThose of you who have followed my ramblings know that I am grateful to Joan Beal and her wonderful <a href="http://www.facebook.com/home.php?ref=home#%21/note.php?note_id=472610627210">Facebook Site on CCSVI</a>. A tireless seeker after truth, she brings much useful information to light. It was in part what I learned there that started me on my own journey.<br />
<br />
Tonight I read her latest note, and felt it was worth sharing in whole with you.<br />
<br />
"Since the beginning of my journey with Jeff's MS diagnosis in 2007, I've been told by neurologists that MS is an auto-immune disease and this can be measured by Myelin Basic Protein autoreactive t-cells (the bit of the immune system that is attacking our nerves) found in cerebral spinal fluid, and that this is exclusive to MS. And this is part of the target for immuno-modulating therapies. But what if these MBP auto-reactive T-cells are NOT really exclusive to MS? Guess what? They're not.<br />
<br />
Here is a study where the CSF of patients with cerebrovascular disease is tested. <b>And those with MS and CVD have the same range of MBP reactive T-cells in the CSF. </b>This leads the researchers to posit that this immune reaction is secondary to damage in the CNS. Which makes me wonder....is the CSF of stroke patients and those with hypoxia or ischemic events regularly tested? And if so, are these people told they have an immune system disease? Why has the research of MS as a cerebrovascular disease been so fraught with controversy?<br />
<br />
<i><b>Myelin antigen reactive T cells in cerebrovascular diseases</b></i><br />
W.Z.WANG,T.OLSSON,V.KOSTULAS,B.HOJEBERG,H.P.EKRE&H.LINK<br />
Department of Neurology, Karolinska Institutet, Huddinge Hospital, Stockholm, Sweden<br />
<br />
<b>Quote:</b><br />
INTRODUCTION In acute ischaemic cerebrovascular diseases (CVD), mononuclear cells appear in the brain parenchyma within 1-2 days and increase in number over the ensuing 5-30 days[1].Also in cerebrospinal fluid (CSF), elevated numbers of mononuclear cells may be detected. These cells are considered to mainly represent monocytes-macrophages, but there are no detailed studies on their lineage with,e.g.,antibodies to different cell surface markers. Oligoclonal IgG bands are present in the CSF while missing in corresponding serum, in about 10% of patients with CVD [2,3].A local B cell response directed to neurotropic viruses,as in patients with multiple sclerosis, has been reported in those patients with CVD who displayed oligoclonal IgG bands in CSF [4].Taken together,these observations indicate that patients with acute CVD may display an intrathecal immune response......<br />
<br />
The strong increases in numbers of MBP, MBP peptide and PLP reactive T cells in blood,<b> and of MBP reactive T cells in CSF, which we here report in our patients with Cerebro Vascular Disease, are in the same range as we have previously observed in MS [10,11].Thus, both diseases are accompanied by an expanded pool of myelin autoreactive T cells and they may well be secondary to damage to the central nervous system.</b><br />
<br />
Here is the full paper in PDF form.<br />
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554378/pdf/clinexpimmunol00048-0161.pdf" rel="nofollow" target="_blank">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554378/pdf/clinexpimmunol00048-0161.pdf</a><br />
<br />
It's really dense and sciency....but it is worth the read.<br />
<br />
If these autoreactive t-cells are found in people that have strokes or cerebrovascular disease, and are NOT exclusive to MS, how on God's green earth can we say that MS is auto-immune?<br />
<br />
It's not. I believe MS is a disease of the vascular system which creates a secondary reaction by the immune system. I believe Dr. Zamboni discovered the engine in MS---and it is CCSVI"<br />
<br />
Sorry if this is hard going, but it is an important challenge to those, including neurologists, who doubt the basis of CCSVI, by saying that only the auto-immune theory has solid scientific backing.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-45378660199345739412010-12-04T16:23:00.000+00:002010-12-05T14:14:11.218+00:00Casting off from the dock.While reading the various CCSVI sites and fora, I came across a lovely analogy today that I'd like to share with you. Perhaps because I love the sea and sailing, I found it resonated deeply with me, but I think it has something to say to each and everyone of us.<br />
<br />
It is from ThisisMS, posted by a Capt Boo:<br />
<br />
<span class="postbody"><i>Reading some of the more recent posts on this forum, I am reminded of a similar experience 8 or 9 years ago. I had sold my business and decided I wanted to go sailing, although the most sailing experience I had was with a Sunfish in high school. I joined a couple of sailing related forum sites. I had a lot to learn. Mixed in with the helpful posts that furthered the conversation and help enlighten me were the few that immediately responded by telling the helpful poster that they had no clue what they were talking about. It turns out that these posters had never actually done a whole lot more sailing than me. They were content to sit on the dock and tell other people how they should manage their lives. I ended up restoring a 25 year old boat and spending the next four years sailing the Caribbean in a 36' sailboat having the time of my life, sailing from Texas to Venezuela and back. Probably would still be there if MS had not entered my life. <br />
<br />
My point is, you can either sit on the dock and pontificate or you can go sailing. Sure, actually crossing oceans is more dangerous, but it has greater rewards and as Reese Palley says, "There be no dragons." ......</i> <br />
<br />
It is a common phenomenon in sailing circles that many would be sailing adventurers never go, because conditions are not quite right. The weather is not perfect, it's too expensive right now,or they want to do just one more year at work, before they retire, sell up and go sailing. </span><br />
<br />
<span class="postbody">They sit by the dock, gazing wistfully into the sunset, watching others come and go. Or, from the comfort of their firesides, criticise, citing the examples where things went wrong. Where a ship foundered, or the perfect storm that brings disaster, ignoring the thousands of boats that sail our seas safely.</span><br />
<span class="postbody"><br />
</span><br />
<span class="postbody">But there are many who have cast off from the dock and are having wonderful experiences, often on a shoestring budget. They prepare their boat the best they can, and make sure they have the knowledge and wherewithal to deal with most situations and then they go.</span><br />
<span class="postbody"><br />
</span><br />
<span class="postbody">So with CCSVI. </span><br />
<span class="postbody"><br />
</span><br />
<span class="postbody">The time has come for us to cast off from the dock. Enough talking. Let's get on with trials, but ones that compare like with like. But at the same time as the deeply scientific, we need to consider the human element of multiple sclerosis. Offer treatment to those prepared to take the risk, but instead of ignoring them thereafter, monitor closely their progress or lack of it.</span><br />
<span class="postbody"><br />
</span><br />
<span class="postbody">While vascular surgeons and interventional radiologists investigate and work on the technicalities, there is much for neurologists to do in assessing patient outcomes and disease progression. and there will be many for whom CCSVI is irrelevant, too late or unable to deal with their variation on the disease.</span><br />
<span class="postbody"><br />
</span><br />
<span class="sqq">“Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” Mark Twain</span><span class="postbody"></span>Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-63555856457214127682010-11-27T11:31:00.000+00:002010-11-27T11:31:21.560+00:00It's the little things that make the differenceAn interesting time since my last entry.<br />
<br />
The big thing, at least to outsiders, is that I was interviewed, along with a neurologist,and a CCSVI specialist from Poland, for a BBC Radio 4 programme, Broadcasting House, which is doing a segment on MS and CCSVI. I had hoped that it would be broadcast this sunday, but it looks like other news has overtaken it, and the MS item will go out another time. We may be the most important matter in our own lives, but not in the overall scheme of things.<br />
<br />
The interview made me think about the changes my operation has wrought in my life. Yes, the big things, like my massively improved walking ability, being able to work again, are important. The things that have made the greatest impact on my quality of life are what, to someone without MS, may seem trivial.<br />
<br />
Being able to tie my own shoelaces. Standing up at the bathroom sink to clean my own teeth. Putting on a pair of trousers without having to sit down or fall over. Do the zip up on my coat. Make someone a cup of tea and be able to carry it in from the kitchen without slopping half of it on the floor. Indeed, making my work colleagues a cup of coffee, that wasn't half full.<br />
<br />
On the day of my interview, I baked half a dozen blueberry muffins to offer to my visitors. So what, you may say. But that small thing encapsulated several of the earth shattering changes to my life.<br />
<br />
I could read, make sense of, and follow a recipe. I put the muffin tin into the hot oven and took out the finished articles without burning myself or the house. It was achieved, start to finish, in under an hour, instead of all day. I didn't collapse, exhausted, part way through, or even at the end.<br />
<br />
It is hard to explain to someone who has not experienced it, just how good something like that makes you feel.<br />
<br />
The small things add up to make a world of difference.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com1tag:blogger.com,1999:blog-6897864714704161387.post-3738935258859218302010-11-21T21:08:00.000+00:002010-11-21T21:08:43.048+00:00Two months on, still looking goodIt's two months now since I had my operation in Poland, and things are still going really well.<br />
<br />
I have kept all the gains I made in the early days. My feet are still warm and I have sensation below the waist. Bladder control has normalised. Fatigue has gone, although I cannot push myself too far. I am back working part time, and loving it. I very rarely "talk MS" any more, where I pick totally the wrong word, unless I am getting overtired. My gait has improved, and I can walk further. <br />
<br />
<br />
I filled in my status update on <a href="http://www.ccsvi-tracking.com/">CCSVI tracking</a> today and this made me focus on what happened. My personal graph is starting to look more meaningful, and it is good to see how far I have come.<br />
<br />
Today we went for a walk to some local springs. I managed to cross the water via some stepping stones - a small set of steps for a man, but a giant leap for this woman.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com2tag:blogger.com,1999:blog-6897864714704161387.post-62992248129598986392010-11-20T04:50:00.000+00:002010-11-20T05:22:06.342+00:00Sad news brings raging controversyThe sad news that a Canadian man has died following complications from his CCSVI surgery hit the web yesterday. Apparently he died last month, but his family felt unable to speak until now.<br />
<br />
35 year old Mahir Mostic from Ontario travelled to Costa Rica to have the procedure carried out in June. After experiencing improvement, his symptoms worsened, and after an ultrasound ,he returned to Costa Rica. A blood clot had formed in his vein, where a stent had been placed. Drugs were injected into the clot to try and disperse it, but sadly he died, reportedly of internal bleeding, on October 19th. <a href="http://ca.news.yahoo.com/s/cbc/101118/topstories/science_multiple_sclerosis_vein_death_costa_rica_mostic">News Coverage</a><br />
<br />
<br />
As details emerged it triggered a torrent of debate about whether or not his death could have been avoided, either by being able to have the initial operation in Canada, or if suitable follow-up treatment had been available. <a href="http://www.ctv.ca/CTVNews/Health/20101119/ms-liberation-treatment-cost-rica-death-reaction-101119/">Reactions</a><br />
<br />
Reports of him being refused treatent for the complications of his operation, along with allegations of patients being delisted by their neurologists and GPs after having the procedure, have fuelled the heated discussions.<br />
<br />
This has prompted both the Canadian MS Society and College of Physicians and Surgeons to issue statements, but so far the heat has not gone away.<br />
<a href="http://ccsvi-ms.ning.com/profiles/blogs/the-ethics-of-treating-medical">See here</a>Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-63136349358581942592010-11-18T20:28:00.000+00:002010-11-18T20:28:23.691+00:00Comparisons, or this made me think.An article appeared in The Lancet this week provoking quite a bit of coverage in the UK press, which made me draw some comparisons with how CCSVI is being considered by the medical world.<br />
<br />
The original proof of concept study for a "revolutionary" medical procedure was <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2809%2960566-3/abstract">published in April 2009</a>, involving 50 patients, about the same time and number as Dr Zamboni's work. <br />
<br />
Here we are in November 2010, and a further multicentre study, double blinded, has been carried out and <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2810%2962039-9/abstract">the results published</a> for the blood pressure treatment. Yet it is not that disimilar, in that a catheter is threaded in via the femoral vein to the target, in this case the kidney ,where the nerves are disabled with a blast of high frequency energy. Yet CCSVI and its treatment is still hotly debated and limited trials are just recruiting, although many centres around the world are now offering it, at a price.<br />
<br />
The press headlines are similar. The Independent newsaper says "Simple surgery offers hope to millions with high blood pressure". http://www.independent.co.uk/life-style/health-and-families/health-news/simple-surgery-offers-hope-to-millions-with-high-blood-pressure-2137057.html<br />
<br />
But as we are warned to avoid a highly dangerous procedure that may have serious consequences, it is described here as "The minimally invasive procedure".<br />
<br />
Makes you think.Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0tag:blogger.com,1999:blog-6897864714704161387.post-61776683592004514652010-11-15T10:53:00.000+00:002010-11-15T10:53:02.359+00:00Thank you to Dr ZamboniI know there is not much time, but everyone out there who's life has been touched by Dr Zamboni and his work, please read and respond to this call : <br />
<div><h2 class="uiHeaderTitle">Collecting Thank Yous for Dr. Zamboni</h2></div><div class="clearfix"><div class="mbs mbs uiHeaderSubTitle lfloat fsm fwn fcg">by <a href="http://www.facebook.com/pages/CCSVI-in-Multiple-Sclerosis/110796282297">CCSVI in Multiple Sclerosis</a> on Friday, 12 November 2010 at 15:18</div></div>Our friend and <a href="http://www.facebook.com/home.php?ref=home#%21/pages/CCSVI-Alliance/125892427429118">Alliance director Michelle Brown</a> will be meeting Dr. Zamboni on Friday next week---<br />
She would love to present him with a pile (giant bag full?) of thank you notes from all of you.<br />
We know how many have expressed their desire to thank Dr. Zamboni, so now here's an opportunity--<br />
Please get thank you letters and notes to Michelle by Wednesday, November 17th<br />
michelle.brown@ccsvi.org<br />
and she'll print them out.<br />
Or, if you have time and inclination, a hand written note or letter is always appreciated. Send to:<br />
Michelle Brown <br />
Business Journals<br />
1384 Broadway,<br />
11th fl<br />
Ny, NY 10018<br />
Ph <span class="skype_pnh_print_container">212-710-7413</span><span class="skype_pnh_container" dir="ltr"><span class="skype_pnh_mark"> begin_of_the_skype_highlighting</span> <span class="skype_pnh_highlighting_inactive_common" dir="ltr" title="Call this phone number in United States of America with Skype: +12127107413"><span class="skype_pnh_left_span"> </span><span class="skype_pnh_dropart_span" title="Skype actions"><span class="skype_pnh_dropart_flag_span" style="background-position: -4499px 1px ! important;"> </span> </span><span class="skype_pnh_textarea_span"><span class="skype_pnh_text_span"> 212-710-7413</span></span><span class="skype_pnh_right_span"> </span></span> <span class="skype_pnh_mark">end_of_the_skype_highlighting</span></span><br />
<br />
Let's make this a special presentation for Dr. Zamboni!<br />
<br />
via Joan Beal and her Facebook site, <a href="http://www.facebook.com/home.php?ref=home#%21/notes.php?id=110796282297&notes_tab=app_2347471856">CCSVI in Multiple Sclerosis</a>Sue Shepherdhttp://www.blogger.com/profile/05949317019095613065noreply@blogger.com0