Primary Progressive Multiple Sclerosis

[Joseph742]

Where is the best place to go to get information about the Primary MS community.

[jimeka]

Hi Joesph, here is a link to healthline, they have this and other articles on PPMS.

healthline.com/health/multi...

Blessings Jimeka

[Frances_B]

I've not come across a Primary Progressive MS "Community" - usually it's just all flavours of MS lumped in together in any of the internet chat boards, forums, or Facebook groups. If you look hard enough you might find one somewhere, but I'm not too sure there's really any value in there being a separate "community" just for PPMS.

[green244 in reply to Frances_B]

Actually, it would be nice to have a separate community because there is no relapsing. Also, it's usually men. Also, many of the clinical trials do not take PPMS sufferers. Personally, I would also like a forum that doesn't have all the social chit chat. Just trading ideas for handling disability issues and drug side effects and new research/treatments, etc. Does anyone know if there is a way to get that on HealthUnlocked?

[Mollyabigail]

Joseph, sorry, but I do not have an answer for your question. I just read your bio and what caught my eye is -- you went to 6 different neuros before being diagnosed. Here's a link to a lady I follow on Instagram. After several misdiagnoses over several years, a doctor told her to stop spending time in doctors' offices, and to go home and play with her kids. She had had M.S. for years and did not know what was wrong. Can you imagine?

staresandsteps.wordpress.co...

[NovaGoose]

Sorry for not being able to provide you with an answer to your question but,

THANK YOU SIR FOR SERVING OUR COUNTRY!