ppms my journey.

Primary progressive MS
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Hi all

i have ppms and am new to posting, so here goes.
Diagnosed 2010 but now realise I have had it for at least 25 years. I thought it was my fault for not getting enough exercise having a desk bound job.
I spent ages exercising at home every day and buying a treadmill. I found I could not run anymore. Went to doctor who referred me to neurology and after tests was diagnosed with ppms. I kept waking in bed and unable to breath as my throat went into spasm, a bit like dying. Also had spasms when food went the wrong way.
I now cannot swallow tablets as the spasms frightened me so much. I also have restless legs for which I take Ropinirole and I take diazepam for the throat spasms.
I am very sensitive to heat and cold and now am reduced to shuffling rather than walking. Have bought an electric scooter for when the weather allows and a rollator for very short distances. I hope a cure can be found for us all while we are still here.

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Hi David
We all have different stories but you & I have a lot of similarities. Non-diagnosis, mis-diagnosis, it doesn’t bear thinking about if the right call had been made years earlier and the right meds made available.

At least you’re not alone. Welcome.
Graeme

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I think lot’s of us are in the same boat. I have progressive ms they say my attitude will get me through you sound similar just keep doing what your doing dont push too hard rest often. It doesn’t get easier :disappointed: pain cramps spasms oh the joy. Find something you are good at and stick at it. Good luck its how you make it work 4U. Xx

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Hello @davidcrockwell
Welcome. Yes, they do say it’s around the 20 years mark that multiple sclerosis starts to progress and disability is more noticeable, I too have felt it worsen over the last few years. :wheelchair:

I was initially dx RRMS in 2001, after temporarily losing sight in my right eye, due to optic neuritis the previous year. :eye:

For me personally, MS was relatively quiescent albeit with occasional relapses, for 2 decades I suppose. Hope they will find a cure, someday. :crossed_fingers:
Best regards,
JP