Progressive MS is the People’s Hot Topic – ask your qus!

Update: your questions are being answered today (Mon 13th Feb)! Watch this space for the answer vid and ask any more qus on that post to make sure Dr Klaus sees them!

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Leave your questions on Progressive MS below, and next week they’ll be taken to a researcher to be answered on video.

What do you want to know about Progressive MS?

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9 responses to Progressive MS is the People’s Hot Topic – ask your qus!

  1. karin munson said on January 31, 2012

    What clinical trials are or will be starting for PPMS??What can people do to stop this maddness a bit?? PT always helps me and Im on quite an assortment of supplements. Feels like its not enough sometimes…just wanna keep walking.

  2. anon said on February 1, 2012

    How much do researchers now know about progressive MS compared to what they knew back in the noughties? We hear a lot about promising treatments for progressive MS, yet there is zilch on the market to help stem progression. Why is this?

    Also, once an MSer’s disability becomes reality, there is no way of fixing the damage. Is it possible to re-grow dead axons in the CNS? If not, why not? My worry is that once treatments for progressive MS come to market, they’ll help only those in early phases of progression and not those with long standing disabilities. Am I right in my assumption?

    Finally, how far away are treatments for progressive MS? Why is it so painfully slow? How can it be speeded up?

  3. andrew newton said on February 2, 2012

    can you predict how quickly progressive ms acts and is it a steady progression or can it become quicker and slower?
    why is all the news about ms relating to drugs and treatment always about relapsing and remitting ms?
    is physiotherapy / hydrotherapy any use at all with ppms or am i fighting a losing battle?

  4. Mallory Knox said on February 2, 2012

    I’d like to know what scientists mean by ‘synaptic density’ when they talk about progressive MS? Is the concept of remyelination and synaptic density two entirely different things? Also, are future treatments like anti-lingo1 and the stuff they’re doing at the Cambridge Centre for Remyelination actually therapies to improve synaptic density, or are they something different?

  5. Alice said on February 3, 2012

    Do you seriously think it will be possible to repair the damage to the CNS caused by MS? Is it possible that even those who are very disabeled by MS will be fixed with future drugs?

  6. KO said on February 3, 2012

    They say PPMS affects the spinal cord more whereas SPMS affects the brain. Why does that happen? Is it worse to have MS more in your spinal cord than in the brain?

    • JS said on February 13, 2012

      I had PPMS with a few lesions in my head and two in my spine… I have found out I had stenoses in both of my internal jugular veins and in my azygos vein (which drains blood from the spine). This was diagnosed with Doppler ultrasound and Intra vascular ultrasound. Treatment was simple balloon angioplasty about 18 months ago. My fatigue is gone and my cognition is better. My walking has become no worse and in fact with physio following my angio I am improving in strength and stamina. Spasticity has also improved. I understand MS has a venodynamic origin which can be seen on MRI and our immune systems are only trying to do what they should do. Taking a drug which alters the immune system is illogical I think.
      http://www.youtube.com/watch?v=xKgganSjKEQ&feature=share

  7. Wiz Khalifa said on February 8, 2012

    What is the life expectancy of someone with prog MS? My cousin died at 35 years of age and had SPMS. I’m worried about something similar happening to me at that age as I too have developed progressive MS. Also, does rigorous exercise help to slow down progression?

  8. Jmabo said on February 11, 2012

    Do getting colds and flu make MS progression worse?

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