Saturday, 30 October 2010

Tracking results

There is a huge amount of data floating around the web about the effectiveness or otherwise of the CCSVI treatment on MS patients. I know that prior to my own operation, I found it difficult to work out what to believe. Videos and comments, both for and against, abound. That was why I started this blog, but I guess for some of you reading this, my thoughts are also part of the clouds of information. Who or what do I believe?

That is why I was delighted to come across the site CCSVI tracking. It hopes to build up a picture by collating data from people who have had the procedure done around the world and tracking what happens to them over time. Is there an improvement in symptoms? Does it last? If so, how long? This should begin to answer the burning questions.

So it is important that as many people as possible who have had ,or are going to have the procedure shortly , take part. Negative and positive results are all important in creating as accurate a picture as possible. It will require an ongoing commitment of about 15 minutes per month. Please find the time.

Because we are all worth it.

Friday, 29 October 2010

Don't try to do too much

Is there anyone out there who listens to the advice they are given? Especially the advice they give themselves? Having been ill for a long time, and had an operation just a month ago, I really should have been building up my activity levels gradually. So far I've been careful to split my daily walks into chunks, listening to my body and stopping before I got too tired. But I've been feeling so good,and it has been so great to go back to work, that I haven't been pacing myself as I should. I started back at two afternoons per week and that was fine. I was coping well, and adding a extra afternoons was going OK. Hey, Ma, look at me, top o' the world.

Then things got really busy. Instead of continuing to pace myself, and wanting to feel useful again, I kept going. I was enjoying being part of a team again, rather than living the isolation that MS imposed. What's a few more hours?

So today, after nearly two and a half full days at work,without a day off in between, my body called time.  Heck, I've had too long of not being able to do anything, that the concept of doing too much is actually pleasurable.

It is good to be normally tired again. No cog fog, no going virtually comatose. MS exhaustion is so different from that experienced by just over doing it. I will sleep like a log tonight. But I will wake up rested and refreshed. It is a long time since I could say that.

Wednesday, 27 October 2010

Sue has her mojo back

This is something that can be skimmed over in "living with MS" guides, but is a very real issue for those of us with MS, and their partners. Apart from the psycological problems associated with living with a chronic progressive incurable disease, and the practical ones associated with poor bladder and bowel control, fatigue and spasticity, loss of sexual function in itself is often glossed over.

Numbness and loss of sensation  below the waist means just that. No amount of lubrication and extra stimulation will help if the messages just aren't getting through. Loss of physical intimacy in a relationship is one more thing to chalk up to the MonSter.

As the sedation wore off after my operation, Robin stroked my feet, and I was able to feel his touch for the first time in a long time. He continued, touching my ankles and calves, joking that further exploration should be left for another time.

Five weeks after my operation, I am pleased to announce that full sensation has returned.

Sue has got her mojo back.

Tuesday, 26 October 2010

Kuwaiti experience

For those of you would like to find out a bit more about CCSVI around the world, this is a YouTube video of a presentation by Dr Tariq Sinan. Some of it is quite technical, but it is worth persevering.

Many MS patients will empathise with the patient in the video. Dr Sinan shows many examples he has found in his practice.

For those still unsure about CCSVI, Newton may not have made his declaration, but apples are still falling downwards.
Kuwaiti experience

Oliver Heaviside, my hero.

No, this is not going to be a long and convoluted discussion about mathematics. I just came across a wonderful quotation which applies very much to the current situation with CCSVI.

While neurologists seem to be trapped in some form of groupthink that stops them from looking at this as an opportunity, and vascular specialists are working on making the procedure safe and routine, the link between CCSVI and MS remains unproven. But as more and more of us have the operation and see benefits, the pressure to make it widely available increases.

And so the quotation. "I do not refuse my dinner simply because I do not understand the process of digestion."

I opted to have my dinner too, how about you?

Sunday, 24 October 2010

Poland Treatment centres under threat

 Sometimes something arises which challenges the medical orthodoxy, and the proponents are ridiculed and excluded. This has happened with everything from vaccination, through bacterial infection, anaethesia to the link between stomach ulcers and a bacterium. Don't let this happen with CCSVI.

Please read the conversation on This is MS, and if you can, send an email in support.

"A neurologist, Dr. Danuta Ryglewicz, and the director of the medical association of Poland have contacted the ministry of health in an attempt to shut down CCSVI treatment in Poland. Please write e-mails to and and ask them to stop their attempts and state why the CCSVI treatment is needed. Or, if you're already treated, tell them your experience. Please send me a blind copy of your mail to, so I can collect them and use them to confront both with them."

Thank you

Thursday, 21 October 2010

One month on

Yesterday was four weeks on from my angioplasty, so I thought I'd do a quick summary of my status, remembering that prior to the operation I was EDSS 5.5, heading for 6, and giving up work.

  • My head is still clear and MS fatigue has gone. No longer take modafinil to get through the day.
  • I have started to return to work part time, gradually increasing my hours as my body gets used to the increased level of activity.
  • Walking without a stick. Can now manage 3.5 kilometres with rest stops
  • Walking speed near normal. I can now pretty well keep up with Robin.
  • Gait near normal. Described as looking like someone recovering from a strain or sprain or similar injury
  • Occasional visits from the MS hug, but of less severity and shorter duration than before. Also confined to lower ribcage, whereas previously would spread up ribs to lower neck, affecting swallowing.
  • Bladder stable. Tolteridone stopped. Can actually wait a few minutes before going to the loo when I get the urge.
  • Still taking carbamazepine for trigeminal neuralgia, dose as before, but timing no longer as critical. Taking my tablets a little late does not immediately trigger an attack. Cold on my neck still does though, scarves keep things under control. Constant level of background pain has gone.
  • Still taking citalopram for mood control. Not just depression, but all emotions on a fine trigger without it, eg get irritated and snappy at the slightest thing.
  • Sleeping erratically, insomnia getting to be an issue. Perhaps making up for all those days I slept for 18-20 hours.
  • Vivid dreams
  • Warm feet
I think this covers everything. A lot has changed since September 22nd! Let's hope it keeps up.

Wednesday, 20 October 2010

Cerebral hypoperfusion linked to white matter lesions in the elderly.

When I had my first MRI, prior to my diagnosis, my neuro talked about the lesions and how you can get them with increasing age. They appear in the white matter. It is a condition known as leukoariosis (LA), which is a major cause of vascular dementia and disability in the elderly.

A taiwanese doctor, Dr Chung, has been carrying out research into the relationship between the jugular veins and transient global anmesia (TGA) and other neurological disorders. He has recently published two papers into aging and the jugular veins.

The etiology is so far unclear. Chronic cerebral hypoperfusion associated with vasogenic edema, microbleeding or/and endothelial dysfunction found in LA favors venous ischemia, instead of arterial ischemia, as its pathogenesis. The involved regions in LA, periventricular and subcortical regions, are the drainage territory of deep cerebral venous system and the watershed region between the superficial and deep cerebral venous system respectively. Adding the facts that periventricular venule collagenosis, and retinal and intraparenchymal venules dilatation are related to the severity of LA, cerebral venous hypertension caused by downstream venous outflow impairment might play a major role in the pathogenesis of LA. Internal jugular vein is the main venous outflow pathway for cerebral venous drainage. The frequency of jugular venous reflux (JVR) is increased with aging. Hypertension, which has a decreased venous distensibility, might further exacerbate the sustained or long-term repetitive retrograde-transmitted cerebral venous pressure and venous outflow insufficiency caused by JVR. Clinically, JVR caused by a dural AV fistula does lead to cerebral hypoperfusion, white matter abnormalities, vasogenic edema and cognitive impairment in several published reports. JVR is suggested to play a key role in the pathogenesis of LA through a sustained or long-term repetitive retrograde-transmitted cerebral venous pressure and venous outflow insufficiency, which might lead to chronic cerebral venous hypertensions, abnormal cerebral venules structural changes, decreased cerebral blood flow, endothelial dysfunction, and vasogenic edema in cerebral white matters.

Dr Chung is postulating that slowed venous flow in the left jugular, more reflux and less drainage is the cause of these white matter lesions in the brain. While this is not CCSVI, nor is it MS, there is evidence out there that conditions thought of as neurological have in fact a vascular cause.

Tuesday, 19 October 2010

CCSVI -The biological plausability of the concept

An extract from an article published in the Canadian Journal of Neurological Sciences
Multiple Sclerosis - A Vascular Etiology?

Bryce Weir A1
A1 Department of Surgery, University of Chicago, Illinois, USA
From the earliest pathological studies the perivenular localization of the demyelination in multiple sclerosis (MS) has been observed. It has recently been suggested that obstructions to venous flow or inadequate venous valves in the great veins in the neck, thorax and abdomen can cause damaging back flow into the cerebral and spinal cord circulations. Paolo Zamboni and colleagues have demonstrated abnormal venous circulation in some multiple sclerosis patients using non-invasive sonography and invasive venography. Furthermore, they have obtained apparent clinical improvement or stabilization by endovascular ballooning of points of obstruction in the great veins in some, at least temporarily. If non-invasive observations by others validate their initial observations of a significantly increased prevalence of venous obstructions in MS then trials of angioplasty/stenting would be justified in selected cases in view of the biological plausibility of the concept.

Here is Dr. Weir's bio-
BRYCE WEIR was born in Edinburgh, Scotland, on April 29, 1936. He grew up in Montreal. At McGill University attended the Faculty of Medicine, from which he was graduated in 1960. He is currently Professor Emeritus at the University of Alberta and The University of Chicago.

He practiced neurosurgery at the University of Alberta for 25 years, becoming Director of the Division of Neurosurgery and subsequently Chairman and Walter Stirling Anderson Professor of the Department of Surgery and Surgeon-in-Chief at the University of Alberta Hospitals. Dr. Weir was president of the Canadian Neurosurgical Society, the Canadian Congress of Neurological Sciences, the Canadian Stroke Society, and the Alberta Medical Association.

In July, 1992, he moved to the United States and was appointed the Maurice Goldblatt Professor in Surgery and Neurology and Chief of Neurosurgery at the University of Chicago. He assumed the Directorship of the Brain Research Institute the following year. Prior to retirement, he was Interim Dean of the Biological Sciences Division and the Pritzker School of Medicine, and Vice-President for Medical Affairs at The University of Chicago, 2001-2002. He was elected to membership of the National Academy of Sciences in 1997.

Bladder and bowel control , the last taboo.

One of the greatest improvements in my quality of life since my operation has been the restoration of bladder control. No matter how effective the medication you use, or absorbent the pads that get you through the day (and night), it is fundamentally distressing to lose the control you acquired as a very young child.

In this day and age, talking about just about anything else is acceptable; Viagra adverts hit just about every email inbox; condoms are openly for sale by the till in the supermarket, but still we avoid discussing leaking bladders and bowels. Perhaps this will also change - at least continence pads have come out from behind the counter in the pharmacy and onto open display.

Yet put a group of people with MS together and eventually conversation will drift round to this topic. Various medications are discussed, along with their various side effects; the blessed relief many experience when they go to self-catheterisation; absorbency of differing brands of pads are debated, along with strategies on how to cope when "caught out" away from home. Because of the cultural taboos, many recently diagnosed feel somehow a failure when they first experience loss of control.

But they are not alone. This is one of the commonest and in many ways the most distressing effects of this sometimes literally shitty disease. Within that self-same group of MS patients, conversation gives way to laughter as different members top each others tales of public embarrassment.

Still, it has a deep and lasting effect on a person's quality of life. Travel and social activities may be curtailed. It may not be practical to work any longer. While some jobs and workplaces can be adapted, this is not always possible. From the check-out operator to the barrister in court, sudden departure is not really an option.

So, yes, my greatest benefit has not been in walking, but in regaining that which as adults we take so much for granted, control over my bladder once more.

Thursday, 14 October 2010

The 33

Like many people around the world I have been fascinated by the story of the 33 men trapped underground in a mine in Chile and their eventual rescue after 69 days. I will admit to watching as each were lifted out using that scary looking but very effective cage they called the Phoenix. As did many others, I cheered as the last miner, Luis Urzua, appeared.

 I also applauded as the last of the rescuers who had gone down to help them, Manuel Gonzalez, turned to the web cam in the underground chamber, bowed and waved in triumph before making his own way to the surface, some two and a half hours later.

Remarkable men all of them.

Much was made of how their survival for such a long time, including the 17 days before any contact with the outside world was made, was down to the way that they were organised into working for their own escape, preparing for the day that some rescue would come.

Their situation also made me think about MS. We too live with uncertainty, as did the men below ground. But doing something that gives us back some sense of control of our own fate, whether it be diet, exercise, CCSVI treatment, disease modifying drugs, or one of the many 'alternative' therapies, helps us prepare for the day when our cure will come, and to survive the interim.

Meanwhile our rescuers are working to come up with a solution. Just as at the mine, where there were three separate plans underway to get them out, there are several avenues being investigated. Just because Plan B was the one that got the miners out, does not mean that the workers on the other two should not be thanked for the effort they put in. So we have researchers looking at different ways to liberate us from the tyranny of MS. At this stage, we do not know for certain which route will turn out the best.

We live in interesting times.

Let us spare a thought for the thousands who die in mining accidents. The Geneva based ICEM estimates 12000 per year, although the actual figure may be higher. As with MS, there are no reliable global statistics.

But this story at least had a happy ending. The sister-in-law of oldest miner Mario Gomez, Belgica Ramirez, told Agence France-Presse: "It's a new life about to begin."

Monday, 11 October 2010

Saw my GP today

Strange to say, but it was really good to see my GP today. She has seen me since my MS was a bunch of strange, unexplained happenings, and at least this time I was not worse than the visit before. Indeed I looked brighter, sounded better and walked without the aid of a stick for the first time in a long time.

It is hard to continue to be hard headed and rational about all this, when it has made such a difference to my life. Each day I am walking a little further, and although my gait is not perfect, at least I am master of my own destiny again.

Some of the people I know have not been so lucky. A couple have had the blockage in the veins come back (re-stenosis) and a couple have had such complicated problems that standard angioplasty, even with stents, has not been able to resolve their circulation.

It also depends on how long and how aggressive the MS has been. If a lot of damage to the brain and spinal cord has  occured, and there is a lot of pre-existing scar tissue, then it is unlikely that this can be recovered from. Although some stroke patients can recover quite a lot of function, despite large areas of the brain being affected, the damage is recent. But with aggressive physiotherapy and rehabilitation, who knows what can happen? That is for other lab rats to determine. For this one, the fundamental theory works.

I continue to read up everything I can on the connection between MS and the vascular system. Links to interesting stuff are in the pages attatched to this blog.

Saturday, 9 October 2010

To sleep, perchance to dream

This is a strange thing, and comes into the category of you don't know it was gone until it comes back, but I've started dreaming again.

Pre-treatment I slept heavily, and crashed for a couple of hours a day minimum, but I have no memory of any dreams. This may be because I slept so deeply that I could not be woken during the dream phase of sleep, and now I can. Or it could be a partial explanation for the cog fog. I was not sleeping properly, dreaming and so processing  the input to my brain.

"REM sleep time is strongly reduced by hypoxic and increased by hyperoxic atmosphere, in accordance with the existence of an O2 diffusion limitation. Any pathological decrease in arterial PO2 and/or O2 delivery creates a specific risk in REM sleep."

Durring REM sleep, there is an increase in blood flow to the limbic system and the brain stem, with circulation to these structures decreasing during non-REM sleep.  As brain activity increases during REM sleep, the cerebral requirements for glucose and oxygen both increase....
Fundamentals of Sleep Technology--Butkov, Lee-Choing  2007

    I would be interested to hear your experience. Do you dream?

    Thursday, 7 October 2010

    I guess I've still got those holes in my brain.

    So it was a nice morning and I decided to go for a walk on my own for the first time. Autumn is my favourite time of year, when the leaves on the trees are turning. I tried to be sensible, taking my mobile phone and a back pack with some money, something to drink and my bunch of keys. I thought of taking a fold-up cane just in case, but no, plan for success. There are plenty of places to stop on my planned route, if I need to rest.

    Off I went, down our road towards the town, through the avenue of horse chestnut trees,pausing to collect a few conkers on the way, revelling in my ability to bend down and pick them up for myself. I love conkers, their deep glossy brown contrasting with the pale cream area. A few in my coat pocket would serve as momentos of my first solo adventure.

    Having stopped to buy a newspaper, I turned for home, uphill this time.  Part way up I stopped for a rest on a bench, sharing my refuge with an old man walking down the hill. We also shared a conspiratorial grin - no one else need know we had not stopped just to enjoy the scene, but we both knew the truth; sometimes you just have to stop.

    So eventually I made my way  to the house, pride in having done it on my own. I reached into my rucksack and pulled out my bunch of keys, only  to finally remember the fact that had disappeared into my brain holes til then. Before we went away, we gave a neighbour my front door key, so that he could keep an eye on the place for us. In all the excitement of my treatment, we had never got it back
    I was locked out,it was lunchtime and neither Robin nor our neighbour would be home until evening.

    After sitting on the doorstep for a while, reading my newspaper and having a drink, contemplating what to do, I remembered the town library. Somewhere warm and comfortable I could spend the afternoon and while away the time browsing the books. I rang Robin at work and left him a message to pick me up from there  when he finished.

    So my solo walk was a little longer than planned, as I made my way back down the hill again to town. But I made it to the library with only one rest stop, something truly unthinkable just a few short weeks ago. I am set free.

    Monday, 4 October 2010

    What can I do in the meantime?

    I know not everyone can get the treatment straight away, so what can you do to keep your circulation as healthy as possible in the meantime?

    First of all, if you smoke, stop now.
    As well as all the other lung problems smoking causes, nicotine narrows the blood vessels. If you have narrowed neck veins already, that's the last thing you want to do. So stop smoking now.

    Eat a healthy diet.
    A low-fat, low salt, nothing in excess diet will stop clogging your blood vessels with cholesterol and lower your blood pressure. Getting and or/keeping your weight at a healthy level (and don't forget too low is as bad as too high). Look on the heart health sites for a good place to start. If find it helps , many MS support groups have sub-groups following the Swank or Best Bet diets.

    I know that heat sensitivity and limited mobility/ balance problems can make it difficult to work your body. But there are options. The UK  MS Trust has a useful DVD and on-line exercise programme . 
    There are also several other on-line exercise and physiotherapy sites. If necessary discuss what is the best programme for you with your medical advisors.

    If you have access to it, hyperbaric oxygen therapy (HBO) may also help your brain and spinal chord tissues well oxygenated. It worked for me. CCSVI may well help explain why some MS patients have recorded benefits from this therapy.

    Certain supplements are also thought to help keep someone with MS as healthy as possible. Vitamin D and calcium are worthwhile, as more research is indicating a wider role for vitamin D than peviously thought. A number of others may again help, so research and find what works for you and your budget.

    There are a lot of complementary and alternative therapies out there, and lots of information both good and bad. A good place to start looking is the Rocky Mountain Centre. I don't advocate any, but if it makes you feel better and you can afford it, go for it. Just remember, if it sounds too good to be true,it may well be.

    Daily victories

    I don't know how long it is before it is considered a real and not a placebo effect. 10 days on and my head is still clear and I stand and walk as well as I did two years ago. The daily slide into incapacity has halted.

    Prior to MS fogging up my brain I used to love cooking, especially baking. Recently my repertoire was limited to packet mixes - even following a recipe was too complex, causing that horrible 'overload' where I ended up not only confused by the recipe, but totally unable to function.  Only bread  remained within my limits.

    Today I made a flour less chocolate cake, following a recipe. It is these little victories that mean as much as the big ones.

    I have a vibration trainer that I have been using to try and keep my muscles in tone. Prior to my operation, I also used it to help control my neuralgia. If I was getting a peak attack and caught it early enough, 5 minutes vibrating my neck and shoulders often nipped the attack in the bud. I'm now using it to help build back up the muscles in my  lower body. As it doesn't make me overheat, I find this the best way at the moment.

    My other big plus is that my bladder control has improved. This may be because I have sensation back in my lower body, I don't now.

    Over all I feel very positive. I just want it to stay that  way.

    Saturday, 2 October 2010

    One Week on

    It sees almost incredible that it is just over a week since I had my treatment. We've just been for a walk in the woods behind our house. The trees have grown so much in two years, since I was last able to go there. It is a beautiful, sunny, autumn day, the leaves on the trees just beginning to take on their golds and reds. The town fair starts this weekend and bonfire night is not that far away.  I was made a great aunt for the third time while we flew back from Poland. So much has happened this year.

    Two of my friends are now booked to go to Bulgaria for the treatment within the next few weeks. I hope they get some of the benefit I have.

    It is interesting to see how the CCSVI idea is spreading around the world. Reading some of the responses,both positive and negative, I have been reminded of this quotation from Arthur C Clarke:
     Every revolutionary idea seems to evoke three stages of reaction. They may be summed up by the phrases: 1- It's completely impossible. 2- It's possible, but it's not worth doing. 3- I said it was a good idea all along.
    Roll on stage 3.

    Friday, 1 October 2010

    Back to work Part 2

    My second afternoon back at work was yesterday. I was able to think and get things done, and next week I am planning to do a little more.

    My head is still clear, no further episodes of breakthrough pain on the neuralgia,  although I am still taking my medication. I get occasional "hugs" around my ribcage when tired or stressed, but the incidence of these seems to be reducing. My feet are still warm and sensation remains in my lower body. I am experiencing occasional tingling around the ankle, a new symptom I have not had before.

    Robin reports that my walking is getting better and faster by the day, I guess as the muscles are becoming used to working normally again. Certainly stairs are no longer the challenge they once were, and I can carry a cup of coffee without slopping half of it on the floor.

    Last night we walked to our local pub to have a meal to celebrate, although yesterday was my last day of heparin injections, so I  was on the orange juice. Shame because they do some good real ales there, but that's for another day. To misquote Neil Armstrong, this was a short stroll for man, but a giant leap for MSkind.