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.
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
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!
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.
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.
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.
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.
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.
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
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
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
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!
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?
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.
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