Friday, 11 November 2011

MAJORITY OF MS'ERS REPORT DIFFICULTY WALKING

NMSS Walking Survey

Approximately two thirds of people with MS (65%) report having trouble walking, the inability to walk or difficulty maintaining balance at least twice per week. In addition, a majority of people living with MS report that they experienced walking problems within the first few years after diagnosis. Among people diagnosed with MS within the past five years, 58% report experiencing a mobility issue at least twice a week.

According to the survey findings, younger people with MS are less likely to initiate a conversation about trouble walking with a healthcare provider. On average, people with MS aged 41 or younger who do discuss trouble walking with their doctor initiate the conversation only 46% of the time.

The survey also found that both men and women with MS who report difficulty walking believe that it can put them at risk, but that women are especially concerned that walking problems can be hazardous:
An estimated 78% of these women and 62% of these men report that trouble walking “makes getting around dangerous.”
Additional findings related to falls revealed that:
  • Among adults with MS who experience difficulty walking, 60% indicate that they have fallen and 34% of those individuals say that a fall resulted in an injury.
  • Typically, people who have experienced falls report having fallen about three times in the prior six months.
  • Walking Difficulties Also Shown to Affect Financial and Social Wellness
Among all people with MS, six in ten (61%) report that it has interfered with their ability to work resulting in a loss of personal income. Many people with MS who have trouble walking and are currently employed indicated that they had to make lifestyle changes, such as switching to a new career (21%) or stopping work altogether for a period of time (21%), because of their walking problems.

Survey results also showed:
  • 79% of adults with MS who are employed report trouble walking has negatively impacted them in some way at work, including having to take days off, asking for special accommodations or reducing work hours, among others.
  • 60% of people with MS who have experienced difficulties walking have had to miss at least one major personal event as a result.
  • 32% of people with MS who have difficulty walking report that it has caused them to feel isolated.
"This survey confirms my own clinical experience."

57 comments:

  1. Walking impairment is the single biggest issue for me. I have PPMS. The first symptoms I noticed were to do with my walking and it has continued in that manner. I have seen Youtube clips on the internet where some people with MS have slurred-speech or have gone blind as a result of their MS, I’m lucky in the sense that I’ve never had such problems yet, and hope I never do, but the walking issue is a seriously debilitating factor.

    My main gripe is that of the NHS not taking the inability to walk in young people with MS seriously. Drugs like Fampridine and Nerispridine are said to improve walking in MS’ers with walking difficulties yet I have not seen MS welfare advocates, including this blog, champion the rights of MS’ers to gain access to these treatments. Fampridine is licensed in many countries yet Britain lags behind as usual.

    Difficulties to my walking have seriously impacted on my quality of life, but when I inform my consultants of this they seem pretty indifferent. I think neurology in Britain is a shameful entity. It is not fit for purpose. There are too many neurologists just sat on their jobs, happy to accept their overpaid salaries just for merely seeing people with my condition once a year. Neurologists, in my experience, are apathetic beyond belief. If someone like me who is a young middle-class educated person feels like a neglected patient, I dread to imagine how other MS’ers from less comfortable backgrounds must feel. The system is not satisfactory and all should hang their heads in shame, albeit, health policy makers seem far from having a moral conscience, perhaps they only have a superficial economic concern.

    MS is not a priority in Britain and never has been. I’m still taken aback that a disease that predominantly affects young adults is given such a short shrift, especially in a society that is said to be obsessed with images and concepts to do with youth culture.

    Walking problems in MS is a serious issue. What is being done about it?

    ReplyDelete
  2. Re: "I have not seen MS welfare advocates, including this blog, champion the rights of MS’ers to gain access to these treatments. Fampridine is licensed in many countries yet Britain lags behind as usual."

    http://multiple-sclerosis-research.blogspot.com/2011/05/good-news-for-fampridine.html

    http://multiple-sclerosis-research.blogspot.com/2011/07/walking-impairment.html

    ReplyDelete
  3. I think there are many MS issues that are not necessarily taken as seriously as they should be by some neurologists, however, I don't think it is all neurologists. There are some out there who genuinely seem to want to help MS'ers and who are more proactive about preserving quality of life, particularly when it comes to highly-active or progressive MS.

    One area where I do think more work needs to be done is greater collaboration between neuros and physios, to make sure that MS'ers are given the right guidance from the point of diagnosis, in terms of building up muscle strength and maintaining flexibility. Therefore, if relapses do occur that affect mobility, someone may have a greater chance of "easier" or "faster" recovery (relatively) or a less steep decline if they have progressive disease. At the moment, it seems that the physio options available are "fire-fighting" when degeneration has already occurred, which could be why so many MS'ers have walking problems?

    ReplyDelete
  4. Prof G, I agree with the first comment.

    Walking is a huge issue yet you hardly ever talk about it. You're always on about debunking CCSVI or some drug to deal with B cells.

    How about you focus on the things that concern us? Walking is a big problem in MS. wHAT research are you doing? How can you help us?

    This blog was great but now it's becoming same-old, same-old.

    ReplyDelete
  5. Prof G,

    Many thanks for all the research info. The world of MS research (you are only one - so we can't keep blaming you) needs to start delivering. The huge conferences e.g. Ectrims come and go, but little comes out in terms of effective treatments for patients today which tackle the real needs today. Too much jam tomorrow stuff. There must be a different model to testing treatments in people who have disability - too much focus on safety when MS is robbing patients of basic human functions. Repairing the spinal cord would be the number one request - time to ditch studies into EAE (sorry Dr Mouse - I'm sure there are plenty of rock bands loking for base players), ditch the gentics research (there are too many involved and we can't change them), ditch the QoL research, ditch the how we can improve the information to patients research, time to ditch CCSVI research (and the research that seeks to debunk it). With all the spare money - plough it in to epairing the spinal cord (5 year timetable to get a treatment to patients).

    ReplyDelete
  6. Re 'too much focus on safety' - don't agree. I don't want half-tested treatments that could do more harm than good.

    ReplyDelete
  7. I totally agree that all the 'hold on' rhetoric is so tiresome. I do understand that MS is research is a highly active field but there is a dearth of tangible products to help those of us who have developed degenerative MS.

    I too want safe products but the methodology of proving efficacy is not meeting the demands of progressive MS'ers. MS has been on the radar for hundreds of years yet even some of the most distinguished neurologists are sceptical about the effectiveness of current DMTs.

    The whole 'wait and see' approach is not doing us any favours. Assisted suicide is an unfair option, but so is having to live the rest of your life just simply degenerating because of progressive MS.

    Improving walking functions is an excellent target. To be honest, I will argue that it's the target I'd most like to see fulfilled. Neither you, nor your staff of contributors, have ever addressed how damage to walking functions can be improved through medicines you’re developing. I assume this is because this is not a target of research for Barts. If that is true then it's such a shame because you, more than anybody else, know how walking disability during young adult life can be soul-destroying and immensely worrying. It's so hard to live like this.

    ReplyDelete
  8. I agree with everyone here. Walking problems have never been properly addressed in MS. Treatments are none existent (where is the Fampridine?) and doctors are genuinely unbothered about how my walking problems are actually effecting me.

    ReplyDelete
  9. Re: "This blog was great but now it's becoming same-old, same-old."

    We agree and are will probably close it down shortly.

    ReplyDelete
  10. Re: "How about you focus on the things that concern us? Walking is a big problem in MS. What research are you doing? How can you help us?"

    Walking is a complex motor task and requires input from several neuronal systems that are all affected by MS; joint position (sensory), coordination (cerebellum), the motor system and inhibitory circuits in the spinal cord. Therefore walking difficulties are an integrator of a lot of systems.

    At a superficial level if we treat MS early and aggressively we should stop people developing walking problems in the first place. Peventing damage prevents the consequences of damage.

    If you already have walking problems then we need to dissect out the different components of the disease and manage those accordingly.

    Options that exist for us include:

    1. physiotherapy
    2. an aerobic exercise programme; a large number or MS'ers are deconditioned
    3. walking aids (splints, canes, crutches, frames, etc.)
    4. functional electrical nerve stimulation (FES)
    5. Anti-spastic agents
    6. Botox
    7. Podiatry (sometimes having your toenails cut, corrective orthotics designed and or special shoes designed improves walking)
    8. Adequate pain relief (pain can affect walking)
    9. Fampridine
    10. Treatment of depression (low mood affects motivation and reduced mobility).
    11. Occupational therapy (having your environment examined and modified can improve walking, for example removing carpets, wall rails, ramps inserted, stair lifts, etc.)

    On the research side we are working on treatments to stop or delay disease progression and we also have a vision of developing neuro-restorative therapies as well.

    We can do a lot to help you if you have walking problems; when you next see your neurology team bring up the fact that you have problems and see what they have to offer.

    ReplyDelete
  11. Re: "Treatments are none existent (where is the Fampridine?)"

    Please previous post. Fampridine is here and several MS'ers are on t he drug already under the NHS. In fact, I completed a IFR (individual funding request) yesterday for one of my patients who wants a therapeutic trial of Fampridine.

    Please remember that only 30% of MS'ers with walking distance respond to Fampridine. It is not a miracle drug; it is licensed in Europe to improve walking speed in MS.

    ReplyDelete
  12. Re: "I assume this is because this is not a target of research for Barts. If that is true then it's such a shame because you, more than anybody else, know how walking disability during young adult life can be soul-destroying and immensely worrying. It's so hard to live like this."

    All of these posters or presentations at ECTRIMS from members of our group includes something in relation to walking; I think we are doing a lot on the issue is just that it is part of other projects. For example, the primary outcome in our animal experiments is something called the rota-rod; this is a walking task. In MS clinical trials it is the EDSS; this is scale is driven by mobility, i.e. walking. All our anti-spasticity work will ultimately impact of mobility and walking.

    VSN16R a novel agent for the control of spasticity P 561
    D. Baker, G. Pryce, C. Visintin, R.G. Pertwee, C. Tanner, R. Ross, A. Irving, S. Sisay, S.J. Jackson, G. Giovannoni, D.L. Selwood (London, Aberdeen, Dundee, UK)

    Wrist and ankle activity monitoring correlates with clinical outcome measures in subjects with multiple sclerosis P 507
    M. Espasandin, T. Barber, M. Calado-Marta, A. Johnston, G. Giovannoni (London, UK)

    Clinical efficacy of BG-12, an oral therapy, in relapsing-remitting multiple sclerosis: data from the phase 3 DEFINE trial 95
    R. Gold, L. Kappos, A. Bar-Or, D. Arnold, G. Giovannoni, K. Selmaj, M. Yang, K. Dawson (Bochum, DE; Basel, CH; Montreal, CA; London, UK; Lodz, PL; Cambridge, US)

    Fatty acid amide hydrolase as a target for neuroprotection P 955
    R.S. Graves, G. Pryce, A. Cabranes, J. Fernández-Ruiz, T. Bisogno, V. Di Marzo, B.F. Cravatt, G.J. Michael, G. Giovannoni, M.R. Elphick, D. Baker (London, UK; Madrid, ES; Naples, IT; La Jolla, US)

    BG-12 effects on patient-reported outcomes in relapsing-remitting multiple sclerosis: results from the DEFINE study P 1071
    L. Kappos, R. Gold, D. Arnold, A. Bar-Or, G. Giovannoni, K. Selmaj, C. Tompkins, S. Agarwal, K. Dawson (Basel, CH; Bochum, DE; Montreal, CA; London, UK; Lodz, PL; Cambridge, US)

    A randomized, double-blind, placebo-controlled study to evaluate the safety and efficacy of daclizumab HYP monotherapy in relapsing-remitting multiple sclerosis: primary results of the SELECT trial 149
    G. Giovannoni, R. Gold, K. Selmaj, E. Havrdova, X. Montalban, E.W. Radue, D. Stefoski, R. Robinson, K. Riester, J. Elkins, G. O'Neill (London, UK; Bochum, DE; Lodz, PL; Prague, CZ; Barcelona, ES; Basel, CH; Chicago, Redwood City, Cambridge, US)

    Efficacy and safety results from CARE-MS I: a phase 3 study comparing alemtuzumab and interferon-beta-1a 151
    A. Coles, V. Brinar, D.L. Arnold, J. Cohen, C. Confavreaux, E.J. Fox, H.-P. Hartung, E. Havrdova, K. Selmaj, H. Weiner, G. Giovannoni, S.L. Lake, D.H. Margolin, M. Panzara, D.A.S. Compston (Cambridge, UK; Zagreb, HR; Montreal, CA; Cleveland, US; Lyon, FR; Round Rock, US; Düsseldorf, DE; Prague, CZ; Lodz, PL; Boston, US; London, UK; Cambridge, US)

    ReplyDelete
  13. Re: "Walking problems have never been properly addressed in MS."

    Every trial that uses the EDSS as a primary outcome measure is assessing that drugs ability to impact positively on walking.

    ReplyDelete
  14. "Re: "This blog was great but now it's becoming same-old, same-old."

    We agree and are will probably close it down shortly"

    I think the issue is the gap between what patients need now and where we are in terms of the research. Lots and lots of research is taking place and several highly effective treatments are on there way for RRMS. The problem is that the patients most desperate for treatments are those with progressive MS - in all honesty, it is likely to be 10 or 15 years before effective treatments for progressive MS become available and treatments for repair are in the realm of science fiction. You are at the receiving end of a lot of anger (not your fault). I think this blog has mushroomed and is taking too much of your time. The annual research day is a better way of engaging with patients. I would find it more helpful to have an hour presentation on the key research results in the past 12 months and flag up what's likely to be interesting in the next 12 months. I would prefer to know that you are in the clinic / the lab rather than having to spend time responding to the increasing anger (cause of anger - MS).

    ReplyDelete
  15. Re: "We agree and are will probably close it down shortly"

    I hope you reconsider your decision Professor G. I find this blog extremely informative and a great time-saver since I don't have to wade through misinformed media articles and even more misinformed patient forums to find reliable information on research and clinical trials to take to my neuro when I see her. Can't you just disable the comments section of your posts?

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  16. Por G,

    Disabling comment option would be the ideal solution - still keep your overall comment at the end. Blog could also continue to advertise trials and get survey responses. It's the comemnts / responding to comemtns that causes the grief.

    ReplyDelete
  17. I second everything Maria said above, especially the point about 'misinformed media articles and even more misinformed patient forums'. Though asking you to continue feels selfish- you are clearly overworked even without the blog and it attracts too many lazy, unfair, and nasty comments.

    Whatever you decide, thank you for starting the blog and continuing so long. It is very helpful and I have learned a lot. I actually check for new posts and comments every time I check email & facebook.

    ReplyDelete
  18. I think you should be more thick-skinned Prof G. Yes, the comments left by MS'ers can, at times, be provacative, I have never found anyone to be abusive or vexatious. Everyone who comes here seems well behaved, though at times they can be somewhat blunt.

    I guess it's a difficult disease that can get the best of people.

    I have loved this blog and thank you for starting it. I sense that you may be running out of things worth reporting on, and that's okay.

    I think PwMS have perhaps become frustrated with the lack of real products for their particular brand of MS. That's not your fault. It's just the way things are.

    Should you decide to abandon this blog then we'll understand. Your attention is better served trying to crack MS rather than report on it.

    Thanks for the memories.

    ReplyDelete
  19. I am very knowledgeable about MS thanks to this blog. While I've grown tired of the emphasis on CCSVI and other things that seem similar in nature, this blog has equipped me with a great awareness of what MS is and how it affects us.

    This was and remains a great blog. There is nothing else like it. I love the fact that I can communicate directly with an internationally esteemed neurologist such as you Prof G.

    I'll miss this blog but understand that you need to refocus your priorities.

    Please let us know the exact date you intend to delete the blog, that way I can try and find alternatives, though I'm not sure they exist.

    ReplyDelete
  20. I will be sad if you close the blog since I have found the context you add to research results, your explanations of concepts and theories and your willingness to engage with commenters helpful and informative. However, you clearly have way too much on your plate and many other important things to do. I will certainly understand if you put an end to the blog.

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  21. It was a good blog while it lasted. Shame to see it go but hope something else will replace it. Maybe Shift.ms will take over?

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  22. Please don't take down this blog. We all have a lot of respect for you and are very interested in following your work. There are a lot of naysayers out there, so it is my suggestion that maybe you continue with the blog but not allow people to make comments anymore. We all look forward to reading about the great work you are doing for MS.

    ReplyDelete
  23. Re: "This blog was great but now it's becoming same-old, same-old."

    We agree and are will probably close it down shortly.

    Wow! I hope Not! This is my number one blog when it comes to information about current developments and reports on MS. And english is not even my mother tongue.

    Are there any insights on what actually makes it hard to walk?
    E.g. I have a "muscle tension" feeling in my amdominal muscle which makes my upper body move forward after a time of walking. Also it causes me to be short of breath which in summary makes it hard to walk. But I can walk for miles and miles if I stop for some seconds once and a while.
    I also noticed some MS'ers who have a tremor in the hands or balancing problems which makes it hard for them to walk.

    I would also like to thank you and the other people who run this side for providing us whith all this infos. Thanks!

    ReplyDelete
  24. Dr G...I want to Tnankyou for your blogs and your insight. Social Media has caused a frenzy that is costing people a lot of money or in some cases their lives. I enjoy reading everything that you post and evaluating it with the SCIENCE that has been proven. If this was a treatment for MS...the science would have shown it by now. Please continue your blog

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  25. Prof. G~
    Please do not shut down your blog. The information you provide is so valuable to so many MS patients.
    I know you fight a daily battle with the ccsvi zealots, but do not allow them to supress vital information. They are simple scared and worried thst if you reveal the truth that CCSVI is junk science, the insane and filthy money they are swindling desperate MS patients will cease, and they don't want that.
    Please let us know how we can help you remain active with your blog! Don't give up on MS patients like myself and so many others who hold your work, dedication & ethics in such high esteem!
    We need you! And I thank you from the bottom of my heart for all your work to educate MS patients.
    Regards,
    Sharon MS patient. Dx 6/4/99.. and I know CCSVI is crap!

    ReplyDelete
  26. Re: "I have a "muscle tension" feeling in my amdominal muscle which makes my upper body move forward after a time of walking."

    This may be spasticity or possibly a sensory constriction band! If it is you may benefit from a low dose of baclofen or gabapentin. I suggest you raise this symptom when you next see your neurologist. Difficult for me to give clinical advice without seeing you.

    ReplyDelete
  27. RE: "We can do a lot to help you if you have walking problems; when you next see your neurology team bring up the fact that you have problems and see what they have to offer."

    Prof G, what are the options available to neurologists in terms of 'preventative' physio/therapy etc etc, rather than waiting for a patient to have walking problems? I am a great proponent of this course of action but I'm unsure as to what neuros have available to them within the NHS for this.

    PS. I would be very disappointed to see this blog (and the comments section) disappear. I've found it an invaluable source of information and believe the comments section is very helpful as I can ask questions without feeling like I'm "bothering" a very busy research team! I've learnt an awful lot since coming on here and think it's a great forum for debate. Please don't shut it down!!

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  28. I think that your attention is being taken away from the clinic in order to sustain this blog. I have great respect for this blog but I would rather your focus was on dealing with MS. I have no doubt you're feeling overworked and that this blog is becoming too much. Therefore, maybe it is for the best to call it a day.

    I would rather have treatments than a blog.

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  29. The blog is coming to an end? Say it isn't so!

    Oh well, I do think the blog's best days are behind it. It is becoming rather repetative in content.

    Still, thank you for the time you gave it. It was pretty good at one time.

    ReplyDelete
  30. (This is anonymous 6.04 pm again)
    I don't understand complaints about repetitive content. Patients & families must try to follow MS research till a cure is found and it will always be a series of research summaries, trial results, survey results, ... What else does anybody expect?

    ReplyDelete
  31. I suppose the blog has become a beast Prof G. There are too many ungreatful MS'ers around. I think you haven't helped yourself by crusading against CCSVI. There are too many foolish folk out there desperate to believe in something and they have not taken kindly to your stance. CCSVI is a fraud and it's taken priority away from finding proper answers to dealing with MS effectively.


    I have enjoyed this blog but totally realise why you want to end it. I have been following for a long time and can see that the tone of followers has become rude and aggressive. Your time is better spent in the lab than trying to educate pork.

    ReplyDelete
  32. Firstly Prof. G's blog is NOT repetitive! He always writes of the most current information out there for MS patients.
    Secondly, some ccsvi zealots love attacking Prof. G because he openly speaks how ccsvi is not measuring up as once "advertised" by Zamboni. And since Zamboni is a Demi- God to the zealots they lash out. They will do anything and everything to stifle information which isn't pro ccsvi. This is the Prof.'s personal opinion on Ccsvi backed up with scientific fact. No ancedotal subjective (sometimes paid testimony) no manic youtube videos promising you'll be cured or yelling "I can jump, I can jump" etc etc. These ccsvi zealots, orgs, and recruiters have A LOT to lose with Prof.G speaking out.
    Prof. G is entitled to his point of view and has every right to voice it as he sees fits. If you don't agree with him that's fine, be cordial and discuss the matter like a rationale human being vs the low blows these ccsvi zealots throw. Here is a novel idea if you don't agree then don't read the blog!
    Allow those of us who look to Prof.G's insight, blog, and studies for information for our own well being and help with our MS to continue.
    The ccsvi zealots have their own little imaginery ccsvi utopia set up on Facebook and elsewhere. Allow those of us who are in touch w/reality the right to have this pertinent information readily available.
    Thank you again Prof.G, please reconsider closing down the blog. Patients with MS(like myself) need your info and insight. Don't give up on us, and more importantly do not allow these ccsvi zealots to bully your blog to close.
    Regards,
    Sharon dxd w/MS 6/4/99
    PS.
    Ccsvi is CRAP and Junk Science!

    ReplyDelete
  33. It's very disappointing to see patients divided in anti- and pro- ccsvi. MS is the common enemy.
    However, this division, sometimes spoken out in religious or military terms, could have been avoided if it hadn't been for the superficial and aforistic judgment of ccsvi by prominent medical figures.

    ReplyDelete
  34. @ Vasilis aka William~
    So because doctors who had an opinion which differed from Zamboni & IRs, its their fault for the division?
    Oh you are SADLY mistaken! How about, do the clinical trials, and then let the science speak for itself. And as far as I can see that's not going so well is?
    Had Zamboni not professed 100% of MS pts have ccsvi and not been a pompous ass about his finding maybe docs who have followed an ethical code wouldn't have needed to be so judgemental to protect patients.
    So blame Zamboni, the IRs and all the UNETHICAL docs riding the ccsvi bubble. That bubble is going to burst and things will get really messy.
    So thank you doctors such as Prof.G for actually giving a damn about MS patients and protecting our health and well being. And shame on Zamboni and the IRs who are profiting off of the scent of MS desperation.

    Sharon
    Dx w/MS 6/4/1999
    Ccsvi is crap, and should be flushed down the proverbal toliet...

    ReplyDelete
  35. Dear Sharon

    Re "How about, do the clinical trials."

    Before a trial can begin, there should be some kind of consensus regarding the best way of conducting the intervention, the anticoagulation and follow-up regime, as well as the outcome measures. All these need time and research outside clinical trials. You should know that more than 50 distinct vein abnormalities have already been identified and the counter is still going. Collagen differentiation in MS patients' veins has been proven. Besides, the number of implicated veins has risen to 20. Unfortunately, all these findings have come during the last year with very little help from neurologists. They continue to believe that ccsvi is about vein anatomy, whereas it is clear that it refers to blood flow and blood flow obstructions that can only be pinpointed by careful interventional phlebography with IVUS (intravenous ultrasound).

    Re "protecting our health and well being."

    -170 tysabri patients got PML, 34 died.
    -1 death during Daclizumab trial (this is not a primary MS drug but a transplant anti-rejection drug that has been linked to raised death rate following heart transplant, due to infections)
    -1 death during Ocrelizumab trial (this is not a primary MS drug but an anti-rheumatoid arthritis drug whose development as such has ceased due to unexpected deaths)

    ReplyDelete
  36. William-
    Yes protecting our health and well being. So you agree performing a unproven, untested, experimental treatment on a patient is the appropriate measures a doc should take? If you agree and you have MS go be a lab rat. I am no doctors lab rat, I am smart enough not to do my own diligent research based upon fact not fiction! Reading and studying documents from unbiased docs with nothing to lose. Which is the exact opposite of Zamboni and his ccsvi zealot co horts. Hopefully your not a doc because if you were you should have your license to practice medicine ceased, for the unethical manner in which you view essential using humans as lab rats!
    Oh please with the Tysabri, for God sake, did they rectify the matter? YES! So stop spinning that crap NOW that is REPETITIVE.
    Ah, so I see its ok for PRO ccsvi ppl to put their biased insane unproven studies out theyre but once someone question's the Demi-God Zamboni all hell breaks loose.K

    " very little help from neurologists"
    Really that's laughable! one of the biggest ccsvi centers run here in the states is run by a neurologist, and sadly their are a few other Canadian neuros who are riding the ccsvi bubble.

    CCSVI is crap accept it and move on!

    Sharon Dx with MS 6/4/1999
    CCSVI is still CRAP!!!

    ReplyDelete
  37. Edit ** am smart enough not to do my own diligent research based upon fact not fiction!**

    I am smart enough to do my one diligent research based upon fact not fiction

    Sharon
    DX with MS 6/4/99

    ReplyDelete
  38. Re: "170 tysabri patients got PML, 34 died. 1 death during Daclizumab trial (this is not a primary MS drug but a transplant anti-rejection drug that has been linked to raised death rate following heart transplant, due to infections). 1 death during Ocrelizumab trial (this is not a primary MS drug but an anti-rheumatoid arthritis drug whose development as such has ceased due to unexpected deaths)".

    This post makes the same mistake journalists make, it cherry picks one risk and then quote risks in isolation. All drugs come with risks, even aspirin. What is important is the absolute risk and for this you need the denominator and you also need to know what are the benefits. How can you assess whether a risk is worth taking without knowing the benefits?

    To get the absolute risks of a drug you have to do large controlled trials and for some rare events you need to do post-marketing surveillance.

    For Natalizumab the risk of PML and hence of dying varies depending on treatment duration, previous use of chemotherapy or immunosuppressive agents and JC virus status. These risks are updated monthly and are posted on this blog.

    http://multiple-sclerosis-research.blogspot.com/2011/08/natalizumab-pml-update-150-cases.html

    This needs to be considered on the background of Natalizumab being one of the most effective DMTs we have at the moment. In highly-active MS it reduced the relapse rate by ~85% and disability progression by ~65%, compared to placebo. Whether MS'ers want to take this risk or not is up to them; I have always argued that people with MS are in the best position to make that call and not me.

    With regard to the two deaths in the Ocrelizumab and Daclizumab studies. These occurred in the phase 2 clinical trials and these subjects both received the respective treatments. They may not have died if they did not receive these treatments. However, the data and safety monitoring committees who oversea the conduct of these trials have made a judgement that the trials and development programmes for these drugs should continue. Why? Because they think the potential benefits of these treatments may outweigh the risks.

    If we stopped every trial programme because of a death we would not have many drugs for MS'ers. For example, there was an avoidable death in the phase 2 Alemtuzumab trial. The death led to increased vigilance and safety monitoring and no further deaths have occurred as a result of that particular complication of the treatment.

    In comparison, for the treatment of CCSVI we have no idea of what the risk:benefit ratio is. Why? Because the necessary clinical trials have not been completed yet. Which is why nobody should be receiving treatment for this condition outside of a clinical trial and nobody should be paying for the treatment either. I would very interested to know how the interventional neuroradiologists consent someone for stenting or venoplasty for CCSVI without knowing the risks or benefits of the treatment in people with MS? I suspect not very well. I would also be interested to know how they justify charging them for an unregistered treatment?

    This blog is about science and the scientific process; the risk:benefit ratios of the current and emerging DMTs are being assessed according to very strict and well-defined scientific principles. If only we could do the same for CCSVI then this endless and fruitless debate would not be necessary. And the deaths and complications associated with CCSVI treatment would not be pointless; they would be part of a process to define the risk:benefit ratio of a potential treatment for MS.

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  39. Re: "Prof G, what are the options available to neurologists in terms of 'preventative' physio/therapy etc etc, rather than waiting for a patient to have walking problems? I am a great proponent of this course of action but I'm unsure as to what neuros have available to them within the NHS for this."

    You are correct; all therapists would love to practice preventative therapy. The idea being can you start treatment to address future problems. We want to try this ourselves and started a "MS Wellness Clinic"; we referred all our patients who we thought were well to see an occupational therapist for an assessment. What we found that is that not all of them were well; some of them had subtle problems that could be tackled early. Unfortunately, this was a pilot study and we couldn't get funding to continue running it. I still remain convinced that prevention is better than cure.

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  40. Dear Sharon

    Re "Oh please with the Tysabri, for God sake, did they rectify the matter? YES!"

    What do you mean? Have the patients resurrected?

    Re "So you agree performing a unproven, untested, experimental treatment on a patient is the appropriate measures a doc should take?"

    What about stem cell transplantation? Death rate around 5% No long term benefits. Cost, 5-10 times that of a ccsvi procedure done properly. Do you oppose on that too? It has all the characteristics you mentioned.

    Re "I am no doctors lab rat"

    Patients that take part in drug clinical trials or are using the drug beyond the tested period are essentially that.

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  41. Re: "What about stem cell transplantation? Death rate around 5% No long term benefits. Cost, 5-10 times that of a ccsvi procedure done properly. Do you oppose on that too? It has all the characteristics you mentioned."

    But they are participating as part of clinical trials; ethically approved, with informed consent and free for participants.

    Re: ""I am no doctors lab rat". Patients that take part in drug clinical trials or are using the drug beyond the tested period are essentially that."

    Again as long as it is done with ethically approved protocols, informed consent, insurance cover, and no direct payment for participating this is fine. This is how drugs and medical and surgical procedures are developed; the scientific way. These methods have taken centuries to develop and should not be discarded as if they mean nothing.

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  42. I have never seen a post on this blog commented on so much. It seems walking problems in MS are a big issue. I think more needs tbe done to remedy this particular ailment.

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  43. Thank you so much for your time. I know with research, teaching, seeing patients, and family this blog justs adds on to your day. Perhaps, reducing the number of posts to every other day or so? Or if comments were disabled on all or some of the posts so as to save time in reading and responding? I would really hate to see this blog go, but if it does, it was greatly appreciated.

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  44. William,
    Do you have MS? Never answered that question. Yes agreed, patients who particpate in clinical trials are essentially lab rats, BUT, it is closley monitored and has a set standard of protocol. CCSVI is being done arbitriarly outside of studies and that is foolish. So if you want to go and do that good for you.
    And no William, they weren't resurrected. But at least it has been adjusted and fixed to some degree. I am sure the # of deaths from the liberation tx is much higher, and its not being reported. People die from dvts everyday and if the pts family "forgets" to mention they've undergone a unproven, experimental procedure, oh my what would happen to the cash flow to the IRs and the ccsvi orgs.
    Sadly I am sure the placebo effect will wear off on these desperate patients or their monthly BS check will stop (for recruiting) and the truth shall set them free. They will most likely be worse off than when they started. And that's a DAMN SHAME.

    Sharon dx w/MS 6/4/1999
    Ccsvi is JUNK SCIENCE

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  45. The Tysabri-induced PML victims and their families are relieved now that they know the risk:benefit ratio. After all, the shareholders of Biogen-Elan are the ones that are mostly worried about PML cases.

    Dear doctor,

    Re "In comparison, for the treatment of CCSVI we have no idea of what the risk:benefit ratio is"

    Angioplasty has been around for more than 30 years. The risks are well known. Nevertheless, safety assessment trials have already been done for people with MS. What remains to be done is benefit assessment. The ccsvi theory, carefully studied, ensures that whatever the effort, it is on the right track.

    Re "But they are participating as part of clinical trials; ethically approved, with informed consent and free for participants."

    There are also freelance stem cell transplantation clinics around the globe. Why there is no crusade against them?

    Beyond that, what matters is safety and efficacy. Stem cell transplantation does not have the scientific justification for wiping out the immune system. It' like a death sentence based on suspicion.

    Sharon,

    Re "CCSVI is being done arbitriarly outside of studies and that is foolish."

    You are misinformed. Many studies are already in progress. The problem is there are no funds, because no one can patent the ccsvi procedure and there are no drugs involved.

    Re "But at least it has been adjusted and fixed to some degree"

    Only for the living.


    Re "Do you have MS? Never answered that question"

    Well, according to you I must be experiencing an 8-month placebo effect.

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  46. Continued~


    Funding trials- let me just say, let the ccsvi orgs pay for the clinical trials. I as an MS pt and member of the NMSS should have a say where the money we donated, collected goes. We need research for a cure not a "band aid". Also, SO MANY pro ccsvi ppl loathe the MS Society yet they want additional funding for trials, NO WAY! Pay for it yourself. Hell, one IR openly admitted he believes that CCSVI and MS are not correlated. If that's the case, why in the hell are the MS Societies liable to pay for research. I have the quote from this doc, which I can also provide.

    Placebo effect~ Yes William you are either experiencing a placebo effect or your in remission @ the moment. I have an article which clearly states(and if you like I can provide the link) that a placebo effect can last upward of of 2yrs depending on the mental status & desperation of said pt. The article goes on to state the Placebo effect has and will continue to fool doctors as well.

    It is foolish and irresponsible to risk your life on a procedure which can have severe consquences just as with Tysabri. The major difference is Tysabri can be pulled because it is FDA regulated.The stents used at times (for the liberation tx if baloon dilation doesn't work) are NOT designed for the use of a vein it was developed for arteries, the stent falls under FDA regulation. Yet again if the doc doesn't disclose why the stent is being used it can not be regulated. Being the liberation tx wouldn't fall under the FDA and they're is NO SAFETY PROTOCOL the loss of life will  increase greatly and with nothing to stop it. If unethical docs are txing pts for this now, and its all about the "Benjamins",for the docs, they won't stop until somehow the tx is regulated. And I and many others are diligently working on doing just that! Stopping the procedure unless in clinical trials and stoping the "rape" of desperate MS pts!

    Sharon
    Dxd w/MS 6/4/99

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  47. I apologize my comments somehow posted in reverse.

    Sharon dxd w/MS 6/4/99

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  48. Sharon,

    Re "We need research for a cure not a "band aid"".

    Finding a cure presupposes finding a cause. However, a worldwide consensus for the cause of MS, even within the views of traditional neurology, is still lacking. Most of MS experts accept the autoimmunity model, some put forward the viral model, and a minority of them believe it has something to do with metabolic abnormalities in the CNS.

    CCSVI is mostly a theory of the cause of MS, rather than a cure. The only promise made by it is that a successful treatment of all the vein abnormalities will halt MS. Turning back installed disability is beyond its scope.

    What is not known yet is the full repertoire of vein abnormalities that can contribute to it. Still, it has to do only with veins of the chest that are formed in fetus during the same angiogenetic process. Moreover, most of the abnormalities are valvular, not anatomical, except for hypoplasias-aplasias.

    Your writing reveals a firm opinion about CCSVI. I believe it is a conclusive standpoint following a thorough examination of all available data, as well as real cases of patients. If it's really so, i am surprised, and also curious about the elements of CCSVI with which you disagree. I repeat, i am talking about the theory that has been formulating the past 75 years and not the treatment.

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  49. Dear Sharon
    Marks for persistence, it appears that some of your posts had been spammed by Google. So nothing to do with us if you made you had to repost.

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  50. Not a problem MouseDoctor. I don't know why Google would think I was spamming considering I handnt posted in a few days.

    It could be due to the length of my response and I had to edit it to fit a few times.

    Nevertheless, thank you for the accolades for my persistence. This is something I feel strongly about and always fight the good fight!

    Sharon
    Dxd with MS 6/4/99

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  51. The most plausable cause for MS is either Autoimmune, Enviormental or Genetic triggers.
    Have you read about the Hygeine theory?
    Or have you researched the lack of evidence due to intracranial pressure which should be a apparent if you test positive for ccsvi?
    Have you researched the fact that a majority of the worlds population is BORN with venous anonomalies? And do not have MS or ccsvi!
    Have you read that patients who are tested using Zamboni's 5 criteria for ccsvi could very well be dehydrated making the veins to resorb and making it appear as though the vein is blocked?
    Do you know Zamboni states a pts should meet
    3/5 criteria, yet many facilities say THEY find it acceptable for the pt to only meet 2/5?
    I can go on and on William. You are correct I know through diligent research ccsvi is NOT an answer, NOT a treatment with sustains improvement NOR halts disease progression. I can show you HORROR stories of pts seeking treatment yet end up worse then they were previously.
    And I want a cure. I want a cure so my family friends etc needn't deal with MS ever. So the fact that ccsvi zealots are stealing money for a possible cure for my proven disorder is UNACCEPTABLE and I will be damned if you William, your ccsvi zealot co horts or ccsvi orgs get in my way.
    So its best to step a side and let the researchers do what they need to do, vs doing BS research on a non recognized procedure un recognized disorder, to appease a bunch of whining ccsvi zealots who think they are entitled, WRONG!

    Sharon
    Dx'd w/MS 6/4/99

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  52. Part 1
    Let me start by stating Zamboni himself says the liberation procedure SHOULD NOT be done outside of clinical trials. Yet desperate MS patients travel to India, Costa Rica, Poland, Bulgaria, Mexico to have this tx, receiving sub par treatment. Sadly even here in the States IRs and some Neuros are performing the procedure and one pt died recently by the hands of a unscrupulous IR.

    Zamboni also states to remain on a DMD post tx. His wife Elena 6 yrs after tx remains on a "undisclosed" DMD. Yet many "liberated" pts go against the "FATHER" of the procedure and DO NOT heed his recommendation! That says too me, he isn't sure if this worked on his wife, so to cover my behind keep her on a DMD, just in case! Oh and this "undisclosed" DMD I can assure you which ever med she takes she's not paying for it. Yet another undisclosed conflict of interest, just like Eostate(sp?)for his "super dupper" one any only ccsvi diagnostic machine. Interesting don't ya think?

    Zamboni also goes on to say it is unethical for ANY doc to charge for a experimental tx ie the "liberation procedure" yet again, recommendation completely disregarded! Why? Desperation and false hope given by ancedotal you tube videos and at times paid testimony and ppl like you and many others William are the reason for so many issues regarding the lib procedure.

    Ppl are depleting they're life savings, 401K plans, mortgage their homes, and also resorting to begging online for funds for their tx. How do the doc's who do the procedure sleep at night? Seriously?

    Now let's discuss insurance fraud, shall we? The liberation procedure to correct ccsvi via the MS route is NOT a recognized tx. That being said there is NO CPT code or ICD-9 code to correspond to the tx, therefore those who have had the procedure/procedures paid for are defrauding ins carriers and "jacking" up premiums. IR's billing for the tx, DO NOT disclose the reason for the angio/venogram and use codes which are for traditional tx. Most ins carriers give you a hard time paying for CBC's . Do you truly think they(ins carriers) would be stupid enough to pay for an experimental tx, if they knew the truth? I think not! Which is why I am informing insurance carriers of the codes being used to get the claims paid, doctor & facility names who are performing the procedure and having the claims "red flagged" and or have medical policy changed, and I have proof of my work and what is occurring with the carriers I have contacted. I will continue to contact carriers to halt future pyments on claims, and hopefully help the carrier retrieve the money which was "stolen" from them.

    Clinical trials? Hmmm, I went to a recent ccsvi symposium and one IR stated "clinical trials & double blind studies were not necessary" they feel they have enough data! What? This hypothesis is in its infancy! This same doc also goes on to say he follows up w/his pts via email vs seeing the pt. That's insane, and foolish and irresponsible. If your gullible enough to fall for that I truly feel sorry for you!

    Sharon
    dxd w/MS 6/4/99

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  53. People are passionate on both sides of the divide.We need to respect peoples decisions about their treatments, even if we have a different opinions

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    Replies
    1. Amen, best thing I have read so far, I feel as if the walls are starting to come down.

      Delete
    2. The ship has long since sailed and the good vessel CCSVI has hit the rocks and sunk with all hands. The money spent on disproving the hypothesis could arguably have been more usefully spent elsewhere but if it stops pwMS misguidedly wasting their own money, then it has achieved its purpose.

      Delete
  54. Since MouseDoctor rephrased his last post here, I can go on with an answer to the Sharon avalanche.

    Typically, the ethics of a treatment say nothing about the validity of the underlying theory.

    Angioplasty is an accepted intervention to any abnormal vein. I bet no one would object if an MS patient had some problem with his leg veins. Moreover, no one would refuse an intervention in the jugulars for a non-MS patient. Vein problems are treated by IRs and they are to decide whether a situation is problematic or not. So, setting aside the CCSVI-MS connection, one is confronted with the question: are jugulars the only veins in the body with no abnormalities? While all other veins can be abnormal and cause symptoms, the jugulars are the only ones that even if they present some abnormality there is no problem in leaving it untreated? Are neurologists to decide whether an MS patient is entitled to an angioplasty? If yes, then who decides whether non-MS patients should have their veins treated?

    Re "The most plausable cause for MS is either Autoimmune, Enviormental or Genetic triggers."

    The earth is either round, or flat.
    That is exactly my point. After 140 years of research no one knows the cause of MS. Everything is still on the table. Plausible for who and under what terms?

    Re "Have you read about the Hygeine theory?"

    I am practicing it. I have reduced the number of my monthly showers.
    Seriously, tell me one aspect of MS explained by that theory. Topology of lesions maybe?

    Re "Or have you researched the lack of evidence due to intracranial pressure which should be a apparent if you test positive for ccsvi?"

    Who said it should? Who said it should be always present? Who said it should be always present in all patients?
    If the blood cannot leave the CNS then less blood will enter.
    I 'll remind you what has been proven:
    1. MS patients have cerebral hypoperfusion.
    http://www.ajnr.org/content/28/4/767.full
    2. MS patients have decreased brain venous vasculature visibility.
    http://www.biomedcentral.com/content/pdf/1471-2377-11-128.pdf

    Re "Have you researched the fact that a majority of the worlds population is BORN with venous anonomalies? And do not have MS or ccsvi!"

    Where in the body? In the extremities? Please provide us with a research about the veins of the neck and the chest.

    Re "Have you read that patients who are tested using Zamboni's 5 criteria for ccsvi could very well be dehydrated making the veins to resorb and making it appear as though the vein is blocked?"

    CCSVI is not about transient anatomic stenoses. It's about congenital growth anomalies (hypoplasias, aplasias), VALVULAR malformations (immobile, fused, asymmetric, long valve leaflets) and artifacts such as septums, webs, pseudo-valves. Everything you can encounter in the legs. CCSVI does not propose any new entity. It merely states that these anomalies exists in the neck and chest also.

    Zealot is a person of faith. I am giving you Reason.

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  55. Will therefore repost again
    in talking about that we are not spamming your posts.It was not a green light for rants, counter-rants,

    I (& probably g) will not be drawn into spending time addressing the above points. I think this aspect needs closure.

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