This Is MS Multiple Sclerosis Knowledge & Support Community

I have a friend who has PPMS. He tried Ocrevus. He is now at EDSS 9, meaning he is bed ridden and almost completely helpless. On top of that it cost him $70,000! I also have PPMS, (EDSS 6.5 or 7) but I think I'll pass on Ocrevus.

Just for the record I got Mononucleosis in my 60's. About 20 years after the start of PPMS.

I had mono but it happened after MS started.

I have frequent UTIs. I was hospitalized twice in the past year because of UTI. Both times my family doctor prescribed antibiotics. The next day I was so weak I couldn't get up off the floor. Ended up in the hospital for about 2 weeks both times. Recently a link was discovered between certain gut ba...

A Paralyzed Man Walks Again Using Device that Connects His Thoughts to His Spinal Cord Maybe this technology will help us before medical technology finds a cure. Personally I'd rather have a normally functioning nervous system. But if the technology is available I'd take it in a heartbeat. What abo...

Scott

Thanks for the info

Dave

MS was dxed 28 years ago. I believed it was primary progressive because I never had relapses. But recently I had 2 episodes that could have been relapses. In both cases I became so weak I had to be hospitalized. Now I'm wondering if maybe i have progressive relapsing. Any suggestions as to how I cou...

At this point I am willing to try anything even if it might be dangerous. Cure me or kill me.

In plain English can anyone tell us what this means? Does milk increase or decrease the risk of MS?

I have a 3 wheel scooter similar to the one you linked to. It works well on pavement but is tippy on the lawn. I think all 3 wheel scooters have that problem. I flipped mine twice.

I haven't tried a power wheelchair but it looks like they are considerably more expensive.

Are any organizations doing research on a vaccine for this? Thanks to Trump's Operation Warp Speed the Covid vaccine was developed in 9 months whereas it usually takes up to ten years to develop a vaccine. Could that same strategy be used to develop one for the EBV virus? That would be fantastic!

My wife and I got the 2nd dose of the Moderna vaccine for Covic19 yesterday. I'm having soreness in the shoulder at the injection site. That was minor. But today I'm feeling very weak. This is much worse than the 1st shot. It was a struggle getting out of bed. Just for the record I have the PPMS var...

According to the National MS society's website people with MS should get the COVID vaccine . Although there are a few noteworthy comments. Source COVID-19 mRNA vaccine guidance for people living with MS People living with multiple sclerosis (MS) are seeking peace of mind on the safety and effectiven...

I'm not sure what they mean by "qualitatively indistinguishable". The simple way to tell is this: If you had relapses and remissions in the past but no longer have them and you have a continuous progression of disability then you probably have secondary progressive. If you never had relaps...

NHE You're right about that. I do seem to be progressing more rapidly especially now that the weather is cold and I don't get outside much. And I am spending more time sitting on my posterior instead of exercising. So I'm starting to ride the exercise bike now. Also I'll see if my doctor will prescr...