4 ms·
I have MS and definitely didn't know that the secondary progressive form of the disease was just a matter of time. Now I'm slowly losing the right side of my b
by lakeeffect 4y ago
I have MS and definitely didn't know that the secondary progressive form of the disease was just a matter of time. Now I'm slowly losing the right side of my body after years of being in remission with numbness in my hands being the only symptom.
There are definitely medical advances. The one I'm most excited about is nervgen. It's regenerative without the radiation and terribleness of stem cells. But it's only starting phase two trials.
Hang in there, it sucks but the doctors reassure me that it's a good time to have MS as thirty years ago there were no treatments.
Now there is the walking pill to help nerves conduct and it really works for me. There are also dmts that slow the progression or stop future lesions.
- citboin 4y agoWhat do you mean by “the walking pill”?
- batch12 4y agoGoogle says "(dalfampridine) Extended Release Tablets, 10 mg, is the first and only brand prescription medicine indicated to help improve walking in adults with multiple sclerosis (MS). This was demonstrated by an increase in walking speed."
- musictubes 4y agoCan confirm. It helps me out. It is a potassium channel blocker that somehow improves nerve conduction in the lower body. It has been available at compounding pharmacies for a very loving time. A company took that, made it a time release pill, went through the FDA hoops, and then released it as Ampyra. Like all MS drugs it was super expensive. Now the generic is available. Still expensive, the number I see is something like $1100 a month. My pharmacy told me they bill the insurance company $180 lol. If you don’t have insurance or it doesn’t want to cover it, you can get a prescription and a compounding pharmacy can make it for you. If they don’t do time release you’ll have to dose every 3 hours or so. It’s a lot less expensive though. Last time I checked it was less than $100 a month.
- Eric_WVGG 4y agoWhat do you mean by “terribleness of stem cells”?
- vrc 4y agoStem cell therapy (autologous) involves wiping out your entire immune system and then rebuilding it from scratch using your own stem cells. It uses (usually) strong chemo drugs to do the wiping out, which themselves are toxic and have tons of side effects. You are rendered weak, with a high risk of secondary infection that requires you to basically isolate yourself until your immune system recovers. It’s very unpleasant. Close family member is currently in the midst of it for multiple myeloma, and spent an extra week in the hospital from secondary infection.
- Eric_WVGG 4y agoWow, I had no idea. Interesting, thanks.
- mush_room 4y agoThank you. I will look into nervgen, initial search results say something about spinal cord neurons, is there anything for the brain? Lastly, I'm not on a DMD, which one are you on, or would you recommend? I didn't understand they slow the brain atrophy part of the disease progress, do all or just some of them do?
- lakeeffect 4y agoI take ocrevus and it's supposed to slow progression.
- relaunched 4y agoIt's not necessarily just a matter of time, but many R/R turn into progressive.
- mush_room 4y agoI would like that to be not so but my understanding is that MS is a continuous process from the start, and that the relapsing/progressive distinction is mainly a factor of its effects relative to age.