Primary progressive M.S.

[Brigid227]

Hi, I was diagnosed in 2007 with PPMS. Since most medicines are designed for RRMS I am not on any MS meds. I take gabapentin for pain. I'm retired and my main complaint is fatigue.

[mike5386]

Ask your doctor about Nuvigil. I take it for Fatigue and it helps. Sometimes Fatigue is caused by not getting a god night sleep which is also common in MS.

[Brigid227 in reply to mike5386]

I will. Thank you.

[greaterexp]

Brigid227 , welcome to the forum. I’m glad you found us. We look forward to learning more about you.

I believe Ocrevus is a possibility you might discuss with your neurologist for treating MS. It may not be the right choice for you, but many folks here are seeing results, even with PPMS. You might search posts here to see what people are saying about their experiences.

Let us know how you’re doing.

[Mmantia in reply to greaterexp]

I have PPMS diagnosed in 2013 rapidly progressing. Starting O Jan 2018. It is worth a try. I am on amantadine, diazepam and the generic celexa.

[Brigid227 in reply to greaterexp]

I will discuss it with neuro. Fortunately my disease is progressing slowly but it is progressing. Coping with the changes it has brought is sometimes difficult, I'm grateful for the support I have received in the short time I've been in this group. Thank you.

[Morllyn]

I am taking Provigil (Modafinil is the generic brand) and it has worked well for my fatigue Brigid227 . Welcome to the group.

[Brigid227 in reply to Morllyn]

Thank you. I will discuss this with my doctor,

[WAshingtongirl]

Welcome, Brigid227 . I've taken amantadine and provigil for fatigue. I'm currently on Ritalin. The fatigue isn't gone, but I'm able to do a little more than before.

Looking forward to getting to know you better! 💕

[dianekjs]

I was diagnosed with PPMS in April and started Ocrevus in June. In the Ocrevus PPMS trials, participants saw a really dramatic reduction in the formation of new lesions, which was considered an extremely impressive outcome. A significant percentage also had modest improvement in symptoms: timed walking tests improved and brain volume increased. If you ever decide to try Ocrevus, be aware up front that it can take awhile to work and show benefit so be patient. A lot of neurologists have failed to prepare their O patients for that and some have been disappointed when they didn't experience immediate results. Slowing or halting progression, as it has demonstrated in trials, is huge.

[Yooper]

Brigid227: Ask your neurologist about Ocrevus. Not many choices with PPMS. I started years ago with Novantrone. It seemed to stop my progression for awhile. Praying for the best for you 🙏.

[9-1950]

Hi there. It's very late to reply to you if this is your latest post. I have just joined & so saw it now. I am 69 and, like you, have PPMS with no meds - apart from Fampyra. I was diagnosed in 2005 but had it a few years before that. Up to now I don't have much pain. Would love to hear from you to see what the last 2 years have resulted in.