I have been secondary progressive for about 4 years after being relapsing remitting for 14 years. Please keep studying the progressive forms of MS so that we can have hope, too!
Thanks. Progressives don't get the attention they desperately need. I was diagnosed in Oct. 2009 and I'm rapidly progressing. If the Mayo Clinic in the Phoenix area has a need for any research subjects, I would love to volunteer.
Wow! Someone who talks about progressive MS! None of the Neurotrons here seem to have even heard of such a thing, and dismiss those of us who have it as lazy or as malingerers. Then again, the Neuros here don't like to diagnose MS even if all three tests major accepted tests come back positive. Once when I was having a nasty exaserbation one of the Pakistani Neuros prescribed yogurt! LOL! YOGURT!!! Well, I ate my yogurt and nothing changed, but at least he was happy.
The problem is all in the numbers. Drug companies research and manufacture drugs which will bring them the largest profits(though to be fair,they do provide money and resources for research which won't bring in a rusty penny if it will help a large number of people).Those of us with progressive MS are a very small subset of a disease which is itself considered rare(don't you feel special?)So the drug companies aren't interested.Our best hope lays with researchers like the one in this video.
@ProgressiveMS Could you tell me what your first symptoms were and how they progressed? Feel free to PM me your answer. Also there has been an ms vaccine called neurovax that halted progression in all forms of MS but the company just filed for bankruptcy.
Alot of good info.
tem103204 11 months ago
please kkep up the good work to bring hope for all those who live with this terrible disease
fbpreviatti 1 year ago
I have been secondary progressive for about 4 years after being relapsing remitting for 14 years. Please keep studying the progressive forms of MS so that we can have hope, too!
Thank you!
AdrienneAce 2 years ago
Thanks. Progressives don't get the attention they desperately need. I was diagnosed in Oct. 2009 and I'm rapidly progressing. If the Mayo Clinic in the Phoenix area has a need for any research subjects, I would love to volunteer.
waywardmuse 2 years ago
I am so glad that you are woking on studying progressive MS! Thank you for doing this!
Hugs,
Angela
angelusa73 2 years ago
Please keep up this research!!!!!!!!
ProgressiveMS 2 years ago
I would suggest focusing on lowered endorphin levels in lab rats and those studied before and after the use of Low Dose Naltrexone.
savingbeauty 2 years ago
Well, isn't that the disease that cellist Jacqueline Du Pre had?
waddleduckie1 2 years ago
Wow! Someone who talks about progressive MS! None of the Neurotrons here seem to have even heard of such a thing, and dismiss those of us who have it as lazy or as malingerers. Then again, the Neuros here don't like to diagnose MS even if all three tests major accepted tests come back positive. Once when I was having a nasty exaserbation one of the Pakistani Neuros prescribed yogurt! LOL! YOGURT!!! Well, I ate my yogurt and nothing changed, but at least he was happy.
QuiglysMom 2 years ago
good grief!
I absolutely agree- nobody seems to know or care about we people with progressive MS. All the drugs etc are always for people with R/R MS.
ProgressiveMS 2 years ago 3
The problem is all in the numbers. Drug companies research and manufacture drugs which will bring them the largest profits(though to be fair,they do provide money and resources for research which won't bring in a rusty penny if it will help a large number of people).Those of us with progressive MS are a very small subset of a disease which is itself considered rare(don't you feel special?)So the drug companies aren't interested.Our best hope lays with researchers like the one in this video.
QuiglysMom 2 years ago 2
@ProgressiveMS Could you tell me what your first symptoms were and how they progressed? Feel free to PM me your answer. Also there has been an ms vaccine called neurovax that halted progression in all forms of MS but the company just filed for bankruptcy.
guitarobsessed85 1 year ago
@ProgressiveMS
I totally agree with you. All the drugs are always for people with R/R MS because that's the common type of m.s.
About 75% of people who have m.s. is r.r. 10-15% is only primary proggressive.
The7legacy 11 months ago
She is a great PI, and does great work. If there is anyone who can find the answers it would be her!
uefamikep 2 years ago
Interesting video for a guy that was dignosed with M.S. I am interested in the stem cell therapy, so keep me posted.
vacationpay360 2 years ago