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I can't get away from the thought that I have PPMS

I cannot get away from coming back to thinking I have PPMS, despite the positive news from tests. Since this all came to my attention with dizziness in August and pins and needles in October, i just keep coming back to that. I've seen my doctor, a neurologist, an ophthalmologist and done emgs, brain and spine MRIs, bloodwork, and physicals. Nearly every test I've done has come back with "good" results. The only things that have pinged is a high rheumatoid factor, and a low acetylcholine receptor level. I've seen a neurologist twice but as my only symptoms are my tingling right side (shin, knee, back of my hand), a dopiness in my right leg, not affecting my movement noticeably but I know it's there, and a little bit of dizziness when I'm tired. I've had small periods of muscle twitches in my legs, nothing bad, just noticeable, and a day here and there where I'm running to the loo ever hour or so. I go to the gym once a week and am not seeing any drop off in strength with what I can lift, bit feel like crap the day after. I've found that in the last 6 months I need to make sure I'm not overextending myself. There's 2 incidents stand out to me. One is a few years back, playing rugby, it just felt like I couldn't run in the second half of a match. Like my legs weren't able to go. I put it down to not having enough conditioning done. The second happened early last August when my left leg just gave way for no apparent reason in a game. And then you start thinking back to times when I was tired doing activities, did I drag my right leg, have i been getting progressively worse. The answer is that since August, slowly but I think definitely yes. I find it so frustrating that no one can help me figure out what is going on, and that I have PPMS in the back of my mind this entire time.

Hi there, I have ppms and I sympathise with the anxiety that symptoms cause while finding out what is wrong. I can only speak from my own experience, by the time of diagnosis I was going a bit crazy with health anxiety. I suggest keeping moving and stretching. I hope you get the help you need.


You say a neurologist, but have you seen an MS specialist neurologist? And have you got a second opinion? I don’t know exactly how PPMS is diagnosed as i have RRMS but i think this is one for the MS specialist.