three months on and keeping well

Keeping 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.

So here's an update of how my symptoms are:

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.

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.

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.

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.


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.

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.

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.

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.

Cog 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.

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.

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.

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?

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"

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.

Notes on the CCSVI vs autoimmune theories part 2

Myelin antigen reactive T cells in cerebrovascular diseases

Modulation of Post-ischaemic immune response in stroke

Stroke and the resulting predisposition to develop immune reaction to myelin basic protein

The "auto-immune" reaction of T-cells in spinal chord injury

Carbon monoxide poisoning, hypoxia and changes to myelin basic protein and immunological response

Post-ischaemic immune response to stroke

Neurogenic bladder  and demyelination following brain hypoxia caused by a car accident

Short term symptoms suggestive of demyelination following carbon monoxide poisoning

So damage the brain, provide some kind of inflammatory insult,and immune reaction to myelin follows.
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.

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.

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.

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.

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.


On a totally different note, could CCSVI in the non-MS population explain the incidence of ME (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome)? Migraines? Bends in seemingly healthy SCUBA divers with "nominal" dive profiles?

The dream of myelin repair is a step closer

A 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.
The results come from the Cambridge Centre for Myelin Repair and the Edinburgh Centre for Translational Research.

What did the study show? Researchers looked at ways that the brain's own stem cells repair myelin in people with MS. Using samples from the MS Society's Tissue Bank, 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.

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.

What does this mean for people with MS? 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.

What happens next? 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.

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.

http://mstrust.org.uk/news/msinthemedia.jsp

MBP reactive T cells NOT unique to MS

Those of you who have followed my ramblings know that I am grateful to Joan Beal and her wonderful Facebook Site on CCSVI. 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.

Tonight I read her latest note, and felt it was worth sharing in whole with you.

"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.

Here is a study where the CSF of patients with cerebrovascular disease is tested. And those with MS and CVD have the same range of MBP reactive T-cells in the CSF. 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?

Myelin antigen reactive T cells in cerebrovascular diseases
 W.Z.WANG,T.OLSSON,V.KOSTULAS,B.HOJEBERG,H.P.EKRE&H.LINK
Department of Neurology, Karolinska Institutet, Huddinge Hospital, Stockholm, Sweden

Quote:
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......

The strong increases in numbers of MBP, MBP peptide and PLP reactive T cells in blood, 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.

Here is the full paper in PDF form.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1554378/pdf/clinexpimmunol00048-0161.pdf

It's really dense and sciency....but it is worth the read.

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?

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"

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.

Casting 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.

It is from ThisisMS, posted by a Capt Boo:

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.

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." ......

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. 

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.


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.


So with CCSVI.  


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.


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.


“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