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183 comments

  5. Chris Noellert-Group Leader 40+ MS Invincibles says:

    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?

    Reply
    • 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.

      Reply
      • 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!

        Reply
        • Douglas Cain says:

          Hi Andree, my doctor is an MS researcher and was involved in the Alemtuzumab (Lemtrada) trials. I insisted on trying Lemtrada I finished the second round of Lemtrada in 2016 with no success I talked to her about Ocrevus she said Orevus is for young people with MS active disease. I’m 64 and have had MS 30 years, she feels I’m in the geriatric phase of MS and Ocrevus would not be helpful.

          Reply
        • Jeff says:

          Ocrevus is not near as good for people with primary progressive MS as it is for RR-MS. I am 55 with PP-MS and have been helped by the Wahls Protocol. Trying pharmaceutical-grade CBD oil, nothing new yet. Exercise and diet have so far helped a great deal. A strict diet alone hasn’t been enough. It is very time-consuming to keep up with diet and exercise, but my fatigue and walking are so much better it’s worth it.

          There is a clinical trial still open studying MS diets: https://clinicaltrials.gov/ct2/results?term=wahls&Search=Search. Results of a trial completed in 2017 are being written up now and we will know more soon about diet and MS.

          Lastly, sign up at https://www.progressivemsalliance.org/ for the latest in progressive MS research.

          Best to you all.

          Reply
        • Janet Gordon says:

          I am 70 with PPMS. was told that Ocrevus didn’t make much difference in patients older than 65. I was told that PPMS slows down naturally. You could fool me? I have more and more pain all the time.

          Reply
    • 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

      Reply
      • 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.

        Reply
    • Diane C Randall says:

      Dear Chris, I’m very interested in this topic too, since I am exactly the demographic you’re talking about. PPMS, 60 y.o., had CIS for 34 yrs, totally disabled since age 48 (2005), dx 2009. First real bAd, then On a “good plateau” for a few years, things getting harder past 2-3 yrs. I’m not a researcher, just 1 individual, but I see no dormancy at all! New dr. put me on copaxone this year, i don’t believe it will help with such a longterm patient as I am. Side effects worry me. NMSS suggests the “Ocre…” for PPMS. I worry about that a lot! Cancer? No thanks! Well, thanks for listening. OH PS, I am on medical mj which is great for spasticity and pain, mostly for anxiety and depression I think. That’s why I want to see more research on it, and to be in a clinical trial. Also the cost is so high!

      Reply
  8. 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.

    Reply
  9. 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.

    Reply
  10. 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.

    Reply
  11. marilyn Kretzer says:

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

    Reply
  12. 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

    Reply
  13. 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

    Reply
  14. 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!!

    Reply
  15. 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.

    Reply
    • 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!

      Reply
      • Diane says:

        I am 65 year old PPMS female retired educator. I am very interested in this remyelation trial. I walk painfully slowly with a cane. I am becoming quite a recluse as this progresses. Do not want to burden anyone with my disability. Just diagnosed in 2016 when a spinal tap confirmed it. But, my neurologist feels I have been experiencing ever progressive symptoms for 20 years.

        Reply
      • 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.

        Reply
  18. 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!

    Reply
      • 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

        Reply
    • 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

      Reply
  20. 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)

    Reply
  21. 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

    Reply
  22. 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

    Reply
    • 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.

      Reply
        • 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 ?

          Reply
          • Diane says:

            I finally got my first dose(s) last month and all went well. Just needed to sleep a lot for a couple of days. I am scheduled for the next dose in late September. Have you had your second yearly dose? How did it go?

  25. 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.

    Reply
  26. 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.

    Reply
  27. 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.

    Reply
  28. 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.

    Reply
  32. Patricia Wagner says:

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

    Reply
  33. 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.

    Reply
    • 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.

      Reply
    • Gia says:

      I was diagnosed 9 months ago too! I am 49 years old. I had extremely bad allergic reaction to the Glatiramer Acetate (generic Copaxone) after taking them for 5 months so I can no longer take them. I am waiting on my Tecfidera to arrive today. What can you tell me about taking Tecfidera? How does it make you feel? Do you have bad side effects? Thanks.

      Reply
  34. 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.

    Reply
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  36. 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!

    Reply
  37. Debby Myers says:

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

    Reply
  38. 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!

    Reply
  39. Ross Lewis says:

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

    Reply
  40. 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!

    Reply
  42. 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

    Reply
    • 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.

      Reply
  44. 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.

    Reply
  45. 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.

    Reply
  47. 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!!

    Reply
  48. Crystie Savage says:

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

    Reply
  49. 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!

    Reply
  50. 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.

    Reply
  51. 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.

    Reply
  54. 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

    Reply
  56. 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.

    Reply
  57. 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.

    Reply
  58. 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.

    Reply
  61. Joseph Tanet says:

    I would appreciate the opportunity to participate in trials which are spasticity-targeted. My spasticity in intense in both legs, hamstrings thighs, and calf muscles…severely restricting my ability to ambulate. Please provide a space for me. Thank you.

    Reply
  62. Wendy Dudek says:

    I was diagnosed earlier this year, though my neurologist believes I may have had MS for up to 30 years, as I had an attack of optic neuritis around that time. Now it appears to be progressive.

    How can I sign up for the trials? This is destroying my life.

    Reply
  63. Chris New Mexico says:

    I have tumerfactive multiple sclerosis, i want to try the lif stem cell clinical trial please even if it kills me

    Reply
  65. Ken Klein says:

    I am 67 years old with PPMS since age 47. Never have been on any MS drugs. I would be interested in participating in the trial.

    Reply
  71. John Lawson says:

    I am 46 and have had relapsing remitting ms for 8 years now and would jump to the chance of this trial, not that I am able to jump any longer.

    Reply
  85. Margaret Johnson says:

    I have PPMS diagnosed 2005 I have not taken any medication all that time.
    I would be interested in taking part in any trial that has the potential to help my symptoms. I live in Hampshire England.

    Reply
  90. Dusty Bright-Commons says:

    Would be interested in being in the study. I have MS. Diagnosed in ‘03, tried several MS therapies, now on aubaugio. Unfortunately, I’m losing more and more function in my right side which is my dominant side.

    Reply
  92. Demetrius Holloman says:

    Hello my name is Demetrius I’m very interested in this clinical trial. I have had relapsing-remitting multiple sclerosis since 2001. I also have optic neuritis because of MS. Please email me with information. Thank you

    Reply
  93. Shawnna Hastings says:

    Hi my name is Shawna and I have PP MS and I would really like to be in this clinical trial. I was diagnosed in February of 2010 and it is rapidly progressing I now have to have walking assistance spasticity I now have depression anxiety and everything that comes with it. I have had to quit my job cuz I can’t work anymore so if someone can please get back to me I would really appreciate it thank you.

    Reply
  94. Paula Trigg says:

    I would love to be part of this trial. I have RRMS and at the moment taking rebif. I am nearly 49 years old & got diagnosed in 2005. Please could you send me some information. Thank you.

    Reply
  98. Emily Sugg says:

    I am interested in participating in the trial. Age 51, diagnosed at 33. Walking with a cane for the past few months.

    Reply
  99. Jeff Holshevnikoff says:

    My wife has RRMS and countless lesions on her brain and spinal cord. Please contact us in case of clinical trials. THX

    Reply
  100. Myron H. Mummey says:

    I was a career soldier for 20 years before MS ripped it away. It eventually ended my marriage because she couldn’t cope. I have RRMS with arthritis as well. I used to tell the ex wife I would do anything to have just 1 day without pain and spasms. I told her and my kids I would live every last second of that one day!
    So anyway you can guess having taken chances my whole life in the service, I would gladly be a test patient for this new drug. With all I have going wrong MS wise, as well as scary bouts with MS depression, it would be a miracle to be normal again. I was 38 and medically retired in 2008 and diagnosed in 2003. I have had it long enough now, nature can have it back! Please feel free to contact me.

    Reply
  102. Terry says:

    I’m a Guillain-Barre Syndrome patient and it too is a myelin damaging disease which usually instantly paralysises its victim. I would be very interested in this trial too. There is a medical trial company right in my city.

    Reply
  103. Sherry Evans says:

    Hi,I’m Sherry from the U.S. and I have RRMS. Seven years and counting. I lost most of my hearing to this and therefor am unable to work or communicate well. I have tried Rebif and Gilenya but the Gilenya caused problems with my eyes and stopped it. Now I take Low Dose Naltrexone and it helps but I still have hearing issues and balance and bladder issues but at least it’s affordable. I would love to be involved in the trials. I am praying God increases your efforts for a cure! God Bless!

    Reply
  105. Scott Van De Grift says:

    I would love to partake in the trial. I have PPMS and have moved from walking 3 miles a day to being totally wheelchair bound in 6 and a half years. If this is as promising as being indicated with re-myelinating damaged nerves then I could sure use it

    Reply
  106. Lisa Chouinard says:

    yes would love to participate in clinical trails for this! Have had MS for many years would love to kick it to the curb and get my life back , as well hope for all others!!

    Reply
  107. Stephanie Durn says:

    I would absolutely consider this trial having optic neuritis keaving me legally blind in one eye and the other is on it’s way.

    Reply
  108. Lacey says:

    Please please please consider me forthe trail. I have progressive ms they now say. I’m 36 with a very loving helpful 3yr old. I have gone from touch walking , to a cane, to a walker within this last year. And my nurse told me this is reality and they are just trying to delay the envitable. I will be bowing out of my career as a Dr’s asisst/scribe of 13 yrs 🙁

    Reply
  109. Charles says:

    I have RRMS as well as I broke my back at L1, L2 and L5,S1. The sciatic nerves as well as peripheral nervous system are my issues and this is an targeted amazing breakthrough. I’d like to volunteer for the clinical trials of this process. This is changing. Potentially game changing for many.

    Reply
  110. Randal Hill says:

    I would love to have this trial. Losing function and quality of life slowly every day is excruciating! The pain and mobility problems caused me to finally use a cane, then walker, and now my wife pushes me in a wheelchair. Having been an active athlete and coach this disease is especially cruel.

    Reply
  111. Nancy Ward says:

    Please contact me for ANY clinical trails that could benefit my mobility and depression. I was a very active person that always exercised and ate healthy. I understand what Randal is saying. It is a very painful disease.

    Reply
  112. Becky Boll says:

    My husband would like to do this trial! He has been using a cane, walker and now scooter outside this past year. Please let us know when it is happening, we’d really appreciate the chance.

    Reply
  118. Marianne Rardin says:

    I am 65, have had PPMS for 34 years and have just had my third Ocrevus infusion. No changes in my life. I would be interested in learning about any trials. Thanks.

    Reply
  119. Debra Corkill says:

    Hi, I was diagnosed with MS in 2013. I am super excited to learn there is another medicinal product for MS. I too would be interested in participating in the trial.

    Reply
  121. Trisha Martin says:

    would love any info on stem cell treatment and would love to get it done I’ll sell any information on Cord Blood my daughters getting ready to have a baby and if it will help me and my MS then she would like to save the cord blood so any information on that would be greatly appreciated… I live in Illinois across the river from St.Louis Missouri but will travel.

    Reply
  122. Paul Cannova says:

    Kansas city Mo, diagnosed with M.S. in 2014, edds of 2.5 to 3.
    Suffering from foot drop, limb numbness, vision problems, heavy fatigue and temp. Sensitivity.
    Would be very intrested in the clinical trials.

    Reply
  124. Christine Bonner says:

    I have just moved from Queensland, Australia to Burlington, Canada and am struggling with symptoms daily – it’s getting harder to walk any distance and it’s getting harder to maintain any kind of positive mood. I’m willing to participate in a trial that might help us to survive and thrive despite this disease.

    Reply
  125. Gayle Garside says:

    I have had ms since 1995. I now have secondary progressive MS. I would love to go on any trial. I went for HSCT in 2016 but feel still have symptoms and progressing.

    Reply
  126. Dr. Liza Sc.D, MPH says:

    I was diagnosed in my early 30’s with RRMS (2000) and SPMS four years later (2004). I have tried several pharmacological and non-pharmacological therapies inclusive of CCSVI and intrathecal autologous stem cell injections outside of the USA (2008). Although these therapies did produce some benefits (cognitive/ocular), I remain non-ambulatory. I have been Rx free for over 15 years, rely on swimming to control pain and to maintain my cardiovascular health and upper body strength. Wondering if your approach may offer more promise and would appreciate any information you can offer on phase II and/or future plans for phase III clinical trials. Thanks – Dr. Liza

    Reply
  127. Liza says:

    Let an earlier message but do not think it was posted. In my early 30’s I was diagnosed with RRMS in 2000 and SPMS in 2004. I have tried a range of therapies but have not used any Rx since 2004. Cognition and upper body strength have been maintained, but am no longer ambulatory. Would so much appreciate outcome and/or participation info on Phase II and future Phase III Trials. Thanks – Liza

    Reply

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