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.”


  1. 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!SharonDx'd w/MS 6/4/99

  2. Part 1Let 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!Sharondxd w/MS 6/4/99

  3. 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

    1. 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.

  4. 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. 2. MS patients have decreased brain venous vasculature visibility. "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.

  5. Will therefore repost againin 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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