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92 comments

  1. Update on existing or new trial data.

    Also any research studies looking at long term disease data for example, MS patients (60+ years) who have had MS for over 35-40 years.

    Any Research data that shows what happens after or during their PPMS stage? Does their MS stabilize with no further activity (dormant)or does their MS become a black hole atrophy disease?

    • Richard Kidd says:

      I am 60 years old and have had MS since I was 17. I am now secondary progressive and there is no indication of the disease slowing down or going dormant. I continue to have more problems and issues on a daily basis now.

      • Andree Graham says:

        I am a 64 year-old female with MS symptoms since I was 16. Am also at the secondary progressive stage. Progression never stops now: any new symptoms get added to the old ones.Frustrating that the new medication Ocrevus is appropriate for primary progressive cases only–not secondary progressive!

    • wendy says:

      wish they could design so that Ocrevus in Canada, just to let you, things CAN get worse, this may be the best thing that I have ever read!!! Come to Canada

      • Raymond Snyder says:

        I wish you the best and hope you are able to get Ocrevus in Canada soon, if it’s not already available. I was approved for it by my neurologist but I’m still having so much trouble getting someone to make the appointment for my infusion. I was diagnosed in 2003 and I’m 47 years old. I’m almost unable to walk and when I fall I become parylized and can’t move at all. I wish you nothing but the best in your fight.

  2. Mrs Heather B A R Campbell says:

    I have secondary progressive ms. I was diagnosed 22 years ago. I would be very interested in any clinical trials.

  3. Jonathan Molineaux says:

    Hello my father is a 62 year old man with Parkinsons. My friend told me about this the other day. My dad said he would be very interested in participating in a trial study using the PoNs device. Please update me on any new trials.

  4. beth jasinski says:

    I am very interested in clinical trials that involve diet and alternative care for MS. I am a 36 year old woman that has decided to not go on any DMDs at this time.

  5. marilyn Kretzer says:

    I was diagnosed MS in 1980 and am now secondary progressive. I would be interested in Tamoxifen clinical trials.

  6. Christine Kennedy says:

    I have SPMS with EDSS 6.5 other than MS I’m in Good health. I’m interested in participating in aHSCT clinical trials

  7. Joanne Gauthier wiebe says:

    I’m a 54 year old , I have a very mild form of SPMS. I would love to be able to participate in a clinical trial

  8. Liz says:

    Hello, I am living w PPMS for 13+ years. I’m 48, a mom and wife, and would really love a chance at a more active role in my son’s life – and my husband’s for that matter. I’d be happy to hear the trials available for participation! Thanks!!

  9. Deborah Solomon says:

    I would try anything at this point to at least minimize spasms. TN does not have medical law and probably won’t. Might be quite a hindrance.

    • Tim Bossie says:

      Judith, our page is being constructed right now that will enable a better way to communicate with you about clinical trials in your area. Keep coming back!

      • george says:

        This is a forum in Australia about.
        https://hotcopper.com.au/asx/cyp/
        this is the company.
        http://cynata.com
        Here is some info.
        But perhaps that is all about to change , and hence the release of SR latest report , just to get some interest building prior to first data on GvHd coming in a matter of months.

        And from a potential licensor of Cymerus viewpoint, and the multiple shots on goal strategy…..same thing, no one wants to put their hand up and pay a chunky upfront license fee for an as yet untested product. Especially a Big Pharma who has a big reputation at stake . But I’m sure many are watching and waiting for results. Of the 600 MSC clinical trials happening out there, how many of these would be prepared to run with Cymerus for future testing on different diseases if they knew that it has already had success in GvHd…??

        Or to put it another way, why would any of them continue trialling with cells derived from the almost obsolete method of bone marrow or adipose tissue donation? It defies logic you would continue down that path riddled with question marks and inefficiency once a superior method has proven safety and efficacy in human trials, and the manufacture of cells is proven consistent, pure, potent and unlimited.

        On this basis it would be very encouraging to see within the 3-6 months following GvHd trial outcome how many takers there out there ready to sign up for Cymerus license for testing on other diseases. Let’s hope it’s AT LEAST 2 or 3 which may prompt Fuji to pull the trigger on an outright purchase.

  10. Sharon L McLeod says:

    I want and I NEED stem cells! I am in a bed. Can’t move my legs. My hands stop working by noon. Just please tell me there is help, or a trial,please!

      • Becky Johnson says:

        I have secondary progressive MS and would be interested in starting a clinical trial of Ocrevus. Please let me know what I need to do to sign up.I

    • Sue markle says:

      Hi I have had Drms for 20 years. I have been on all abc drugs and also Tysabri. I have done so well on Tysabri but also just tested positive for JC virus I would be interested in getting in a clinical trial of the ikd-001

  11. Diane says:

    I have just been diagnosed with PPMS last month. They feel I have had it for about 11 years when I first began looking for a medical reason why my left leg was so weak after walking 2km that I had to lift my knee to get my leg in the SUV! It finally showed up in the lumbar puncture I had last month. I would be interested in any trials for PPMS.
    (63 year old)

  12. Amber COBB says:

    I was diagnosed 2010 I was told because I’m a young black female it’s going to affect me faster than a white female and it has. I have been on tecidera,rebif,immuran,abuigo and nothing has worked my Dr. who’s an oncologist gave me information about IDN if there a clinical trail in my surroundings area please give me information

  13. Amber COBB says:

    I was diagnosed Aug 2010 I was told because I’m a young black female it’s going to affect me faster than a white female and it has. I have been on tecidera,rebif,immuran,abuigo and nothing has worked my Dr. who’s an oncologist gave me information about IDN if there a clinical trail in my surroundings area please give me information

    • Rayola Cartwright says:

      Hi, I am a 72 year old Black female diagnosed 20 years ago with ppms. For first 12 years of ms, I took, Avonex,Navantron,and Copaxone without good results. Decided not to take any more of those but, to get personal trainer for exercising 2 days a week along with 2 days of physical therapy. Now 10 years later, today (6/7/17) I walked 100 feet without my walking cane or touching anybody or anything, just with my physical therapist at my side.
      Also, one week ago, I received my first 1/2 dose by infusion of Ocrevus and I have been taking Ampyra for about 2 years.

        • Steve says:

          Hi Diane ; I just received my first 2 infusions of Ocreavus and it may replace my infusions of Solumedrol. Ocreavus has greatly reduced pain and spasticity in legs and given increased strength to legs just like Solumedrol. If I could eliminate Solumedrol treatments it would save my body from the steroids. How did your treatments go ?

  14. Carol Fredrek says:

    I have MS and was diagnosed in 1993. I was initially diagnosed with RRMS and 4 years ago had my first attack and have since been diagnosed with SPMS. My primary symptoms are gait and balance. I currently use a cane. I have been following the PoNS studies for over a year and have been following Helius Medical Technologies and understand that a clinical trial will begin this year in Canada. I live in Canada. I am absolutely interested in this next study.

  15. Ann McIntyre says:

    I am interested in participating in a clinical trial for the PONS system. I am a ” four for”– I have M.S., balance issues, noisy brain, hyper reflexive.

  16. Barbara Martin says:

    Have a good friend who has MS, was diagnosed in 2006 and now uses motorized wheelchair full time and has had worsening symptoms throughout the years. Would be interested in stem cell therapy or other trial to help improve his situation or at least stabilize it.

  17. Carol Hanson says:

    I was diagnosed with MS in 1997, but had symptoms for years prior, no mention of what kind of MS. Since then, have been told it’s PPMS. Spasticiity and lack of balance are worst symptoms. Right bicep constantly clenched. Much pain from spasticity in arms, shoulders and legs. Pain killers not very effective. Responding to article on medical marijuana trial, which is legal in my state.

  18. Patricia Wagner says:

    I have Spms! I was diagnosed in 2003. I would be interested in clinical trials that addresses this stage of MS.

  19. Angela says:

    I am 34 and was diagnosed with MS a year and 9 months ago. My neurologist is confused about what kind of MS I have, which leaves me frustrated. I am on tecfidera and hoped this new drug oceverus was the answer but I am completely disillusioned at this news. I have been researching it and found out that Roche, the drug company behind Oceverus have had FDA failure to get this drug approved for both Rhumatoid arthritis and Lupus treatments because of the threat of it causing cancer and infection as several people died of these conditions during clinical trials! But it’s been approved for MS????
    I am not willing to put that into my body!
    I am hoping the drug in 3rd stage clinical trial that allows remilation has more promising results.

    • Steve says:

      Wow Angela. If your Neuro can`t determine what type of MS you have, they must not be an MS specialist Nero. Ocreavus is for PPMS and RRMS, so if you don`t know what type of MS you have, you probably would not be approved to get it. Not sure which clinical trials your`re talking about for Ocrevus, since I have not seen any results where Ocreavus caused deaths.

  20. Debbie Viragh says:

    I am 48 and was diagnosed in 2000. I have extreme spasticity in my right hand and it’s slowly creeping up my arm. I have RRMS. I just want something to loosen up the right hand and arm. Willing to do any trial that will benefit me. I believe that the spasms are mostly caused by excessive stress. I’m trying to elevate the stress but would also like something to help this along as well.

  21. Lisa says:

    I am 51 and I was diagnosed in 2004 but I have had TN since well before I was diagnosed with MS. I had RRMS and now I have SPMS and TN. I am interested in a Stem Cell Trial. I have Dropped Foot and Gait problems. I would like my nerves repaired. TN can be really bad. It makes it cry!

  22. Debby Myers says:

    Would like to be in clinical trial for chewrx. SPMS & spacicity in both legs. Diagnosed in Feb 2016.

  23. Gavin Cantwell says:

    I know two people who receive 24/7 care in Horsham, England, who have extreme cases of MS. If someone could contact me with any information on clinical trials, then it would be hugely appreciated.
    Many thanks!

  24. Ross Lewis says:

    I would like to be placed on any trial please. Secondary Progressive, diagnosed 30 years ago. Now aged 68.

  25. Abby Curtis says:

    I would love information on clinical trials for stem cells. I was diagnosed with MS in February of 2017 at 38 years old after optic neuritis. I’m a physical therapist, a mom of 2 young children and a wife. Want to remain as active and healthy as I can!

  26. Corissa M Sorin says:

    My husband was diagnosed with intermittent relapsing MS in 2010 at the age of 28.
    We are from Canada and are the parents of 3 young children. Being able to participate in this trial would be life changing, just as so many other people have said.
    If you are looking for people at different states of the disease, please contact us.
    My husband is still able to work, doesn’t have mobility issues, but suffers from sensation problems as well as joint pain.
    Please contact me with any further information about this trial.
    Thank you
    Corissa Sorin
    Winnipeg, Manitoba, Canada

    • Tim Bossie says:

      Hi Corissa. Thank you for the comment. We would like to encourage you to contact your doctor with this information to see if your husband is eligible for the trial.

  27. Brian Mahood says:

    I first diagnosed myself, ( not believed by my own doctor) as there were no confirmatory tests at that time), being a physician, when I was 28 and am now 70!!
    Hope springs eternal and my RMMS has been relatively kind to me with circa only three flare ups each year which have sesponded to oral/I.v. steroids +/- admission to hospital. I am always hopeful that a new ‘wonder drug’ will become available & have been involved in several trials both on the in & the outside which has taught me that one needs to be a very patient patient.

  28. Carolyn Holliday says:

    I am very interested in this device. My gait is really off. Any information you can send me about this device will be greatly appreciated. Thank you.

  29. Crystie Savage says:

    I have MS since I was 30, I am 57 now in a wheel chair, I would love to have more info on circa. I want to walk again!!

  30. Crystie Savage says:

    I have taken Betasorn, Copaxane, Avenix corrtly Tysabria I hope I spelled all of those meds right.
    -Thank you

  31. Sarah Galante says:

    I would like info on the clinical trial too. My MS got very bad after my pregnancy years ago. Nothing has worked for me!

  32. Steven L Syfert says:

    My Brother is an MS patient and needs something other than conventional MS Medication. I didn’t even realize until recently nor did he there are four different types of MS. His doctors are antiquated GPS. Please accept him into drug trials.

  33. Trish Prebor says:

    I am 52. Rrms. Interested in being in your trial. Happy to fly to England anytime. Want to keep teaching. Please send more information when available.

  34. Carolina F says:

    my sister is very interested in participating in this trial, please let me know when where and what does she needs to do to participate

  35. NANCY WARD says:

    I would be very interested in any trails for MS. I am almost 62 years old and was diagnosed when I was 58 but I was told I had MS since my early 30’s. I has slight scoliosis and all of a sudden it started getting worse in my mid 30’s, so the Doctors thought that was my problem. I have a very hard time walking or lifting my right leg at all.
    Please inform me of any new trials so I can get my life back.

  36. Rusty Johnston says:

    My name is Rusty Johnston and I would like to be in the clinical trials for the restore exoskeleton. I have had M.S. for 35 years and have used an exoskeleton in therapy. to improve my walking.

  37. Laura Gonzalez says:

    My name is Laura Gonzalez and I have just been diagnosed with MS. I’m 48 and would like information on your trial to be a part of it.

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