estimado amigo, mi hijo tambien tiene ms secundaria progresiva, esta postrado muy mal, pero aca en Argentina no tiene ningun medicamento para esa etapa. Creo que eres estadounidense. Como se maneja alli esta etapa? mi email es [email protected] un abrazo.
Send trial info to me. I’ve heard scar tissue in the brain from too many injuries can be replaced with stem cell to repair problems with memory and/or tremors. True?
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?
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.
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!
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.
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.
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
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.
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!
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.
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.
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!!
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!
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.
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.
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
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)
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
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
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.
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 ?
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?
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.
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.
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.
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.
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.
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.
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.
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!
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!
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!
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
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.
I am hopeful to get additional information in order to participate in this clinical trial. Please feel free to contact me via email at [email protected].
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.
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.
I, too, have MS. Was diagnosed 1984, am walking with a walker. Would love to be in the trial. Maybe I would be able to walk with my grandchildren, normally, before I die!
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.
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.
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.
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.
I am interested in participating in this clinical trial. What is the trial number? Are you still taking patients? Are there additional articles on this?
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.
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.
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
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.
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.
I would like the information regarding this clinical trial. I have an appointment with my neurologist in early May and had planned to discuss inclusion in some clinical trials that he may suggest.
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.
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.
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!
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
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!!
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 🙁
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.
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I would like clinical trial information
I need a clinical trial so badly
so do I!!! I have both ms and pd if you can believe it. We need a breakthrough!
Where can I sign up? !!!
I would be interested in taking part
I would love to join the study.
Sign up for the trials too. Thanks Rick
i would like to be in the trial also
I have secondary progressive ms and am very interested in this clinical trial
estimado amigo, mi hijo tambien tiene ms secundaria progresiva, esta postrado muy mal, pero aca en Argentina no tiene ningun medicamento para esa etapa. Creo que eres estadounidense. Como se maneja alli esta etapa? mi email es [email protected] un abrazo.
Send trial info to me. I’ve heard scar tissue in the brain from too many injuries can be replaced with stem cell to repair problems with memory and/or tremors. True?
I need this trial ! When can I start ?
I would be real interested in this trial
I would like clinical trial information too.
I too would like clinical trial nformation
Many thanks
I also would like any information on clinical trials for MS. Let’s make it happen!
Sign me up for the chewrx clinical trial . Some relief from the pain would be tremendous . Thank you
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?
My partner has ms and has had it for30 yrs and we are looking for clinical trail availble for him
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.
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!
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.
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.
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
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.
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!
I am in the same situation and have the same question. Yet, every day does surprise me with something worse than the day before.
Very interested in any Tamoxifen clinical trials
As mentioned, interested in any Tamoxifen clinical trials. Forgot to say I have PPMS – diagnosed 2015.
I am very interested in the Phase 3 Ozanimod clinical trial.
I have secondary progressive ms. I was diagnosed 22 years ago. I would be very interested in any clinical trials.
I have secondary progressive and am currently bed bound. I am 57 and was diagnosed with friends in 2008. I am considering Moving done.
I hate autocorrect! I was diagnosed with rrms in 2008. I am considering Novantrone.
hi, consisered autologous stem cells? your immune sytem is wiped out and replaced with your own stem cells.
Susie
This procedure has caused several deaths. If you’re willing to run the risk, it’s supposed to help a lot.
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.
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.
Interested in how you are doing Beth!
I was diagnosed MS in 1980 and am now secondary progressive. I would be interested in Tamoxifen clinical trials.
I have SPMS with EDSS 6.5 other than MS I’m in Good health. I’m interested in participating in aHSCT clinical trials
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
What clinical trials are out there? I’m almost 64!!
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!!
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.
Hydrocodone and valium ( low doses) have helped my spasms!
I am 72, live with SPMS, diagnosed in 1999. Would be interested in clinical trial information.
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!
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.
Thank you. I am interested in the stem cell research. I live in Seattle.
Kerri
I am as well!! Super interested!!
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.
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!
I would like to have more information on this drug I have relapsing MS also recently diagnosed with the J.C virus.
Hi Donna. Make sure that you sign up for our clinical trial notification service for any trials on your area. 🙂
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
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
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)
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
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
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.
I have PPMS and am soon to get ocrevus. How did you feel after your first iv of it? What can I expect?
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 ?
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?
I have MS and SLE. Seeking clinical trials.
I too have MS (sine 1988) and would love to be considered for clinical trials.
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.
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.
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.
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.
I would like info on stem cell I’m 57 I have MS I am in an electric wheel—–I just to walk again
I have secondary progressive MS. I was diagnosed 6years ago. I would be very interested in any clinical trials.
I would very much interestedi in this trial.
I have Spms! I was diagnosed in 2003. I would be interested in clinical trials that addresses this stage of MS.
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.
Are you still on Tecfidera? I am but thinking if changing meds.
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.
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.
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!
Would like to be in clinical trial for chewrx. SPMS & spacicity in both legs. Diagnosed in Feb 2016.
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!
I would like to be placed on any trial please. Secondary Progressive, diagnosed 30 years ago. Now aged 68.
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!
I would like to take part in clinical trials. I have Relapsing remitting ms. I’m 43 years old.
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
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.
I am hopeful to get additional information in order to participate in this clinical trial. Please feel free to contact me via email at [email protected].
Thanks a ton,
Jeffrey
I am very interested in finding out more about about this device. My gait really needs help.
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.
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.
Please send me all info on Rewalk Robotics and trials. Thanks
Dianne
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!!
I have taken Betasorn, Copaxane, Avenix corrtly Tysabria I hope I spelled all of those meds right.
-Thank you
I would like info on the clinical trial too. My MS got very bad after my pregnancy years ago. Nothing has worked for me!
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.
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.
I, too, have MS. Was diagnosed 1984, am walking with a walker. Would love to be in the trial. Maybe I would be able to walk with my grandchildren, normally, before I die!
My wife has SPMS with an EDSS score of 9.0 and would like to participate.
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
I would partipate and need to.
I am 30 years with this outstanding hope for a turnaround… or even stability.
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.
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.
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.
I am 57 years old and have SPMS. I have had MS for over 30 years and would like to particiapate in trails.
I would like more information reguarding the clinical trials, please and thank you.
Tara Wells
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.
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.
I have tumerfactive multiple sclerosis, i want to try the lif stem cell clinical trial please even if it kills me
I want to be a part of the trial!!
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.
Ken Klein ; Has your doctor talked to you about a drug for PPMS called Ocrevus ? I am 65 w PPMS and am on it.
I would love to be part of a clinical trial!! Diagnosed with PPMS 12 years ago at age 46.
Sign me up for the trial too!!
I want to enroll in a trail
I would like to have information about the Biotin trials if they are still recruiting.
I would like information about the Biotin MS trials if you are still recruiting.
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.
I am interested please I want in this clinical trial.
I am very interested in participating in this trial & any/all updates related to this type of research.
I am 61 years old and have SPMS. I have had MS for over 35 years and would like to particiapate in trails
I’m also interested in this trial. Please send me informations as it becomes available.
Interested!
43 F, RRMS with foot drop.
I would love to be in eluded in this trial.
Where do I sign!?
I have a lot of issues walking.
I am interested in participating in this clinical trial. What is the trial number? Are you still taking patients? Are there additional articles on this?
Where is this study? When and how can I participate? This is so very promising! I have SPMS. Please contact me with more information.
Would love more info my ms puts me in bed would like to get out and stay out
My husband is 65 and is diagnosed with secondary progressive MS. Very interested in clinical trials. Thank You
Very interested in this clinical trial and how to be part of it. Please advise. Thank You
Yes I would love to be part of this trial please. Thank you so much for your consideration.
I would like to be apart of the trial.. More info please
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.
I am interested. Please send information.
I am interested in the trial. I have MS. I had HSCT in Israel. Now I need myelin sheath repair.
I am interested in doing a clinical trial.
Would very much like to participate in this trial
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.
Would clinical trial info concerning Quetiapine fumarate
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
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.
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.
I would like the information regarding this clinical trial. I have an appointment with my neurologist in early May and had planned to discuss inclusion in some clinical trials that he may suggest.
Been on tysabri for too long… I’ll be a guinea pig!!!! Sign me up Scotty!!😁
Please choose me for the clinical trial. There is nothing to lose by trying…
I am interested in participating in the trial. Age 51, diagnosed at 33. Walking with a cane for the past few months.
My wife has RRMS and countless lesions on her brain and spinal cord. Please contact us in case of clinical trials. THX
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.
I would like to know about the trial, please.
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.
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!
Please contact me for clinical trial
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
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!!
I would absolutely consider this trial having optic neuritis keaving me legally blind in one eye and the other is on it’s way.
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 🙁
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.