Forum

PPMS

I am at my wits end, I have had symptoms for a long time but this past year there seems to be no repsite. My last MRI a year ago was clear but despite this my mobility is descreasing. I am falling more frequnetly to the point that my gp is concerned. I wake very night with chronic spasms and my legs constantly buzz and tingle. A recent assessment at a gait laboratory lead to my left leg going into spasm followed by my right it was horrendous. The consultant can’t believe that my mri was clear. I am being referred back to the neurologist but if they repeat the mri am not hopeful it will reveal anything else. Interestungly, my left arm always feels as if it has been over worked and constantly aches. I have been diagnosed with fibromyalgia but this is now being questioned, as so many symptoms don’t fit. If anyone wants to share their story not as a comparable but to help me make sense of what might be happening, I would love to hear from you. Lou x

I’m glad you are being referred back to the neuro and I agree, it’s odd that you’ve had a clear MRI but there is obviously something going on.

I get random aches, mainly in my arms, and I have had spasms in my feet and legs a few times, I think when they’ve got a bit cold (my temperature sensitivity in my feet is shot, they can tell me they are baking hot when they’re cold to the touch, vice versa or sometimes they manage to tell me they are hot and cold simultaneously!).

My physio has given me exercises to improve my core strength and my balance: can your GP refer you to a physio? Mine set me exercises to do at home but he monitors my progress, and the exercises he set are working, so I think it’s an avenue worth exploring. It won’t help with the “why”, unfortunately, but it may help your mobility, or at least slow down further decline.

Good luck.

Hi Loulou, sorry to hear you’re having such a terrible time getting a diagnosis. Without lesions showing on MRI it can be very difficult. Have they suggested a lumbar puncture (LP)? Even with lesions showing I didn’t get a diagnosis until I had a positive LP. Also, apparently, some of the older MRI machines do not always show all lesions. So that might be worth looking into. Apparently the newer ‘state of the art’ machines are much better. Must say your symptoms do sound very MS… both the pain and the buzzing and tingling in legs which I also have 24/7. Although like all things MS it is different for all of us and some people don’t get the buzzing at all. Can only suggest you ask about LP and what MRI machine they’re using… and hang on in there. We all know how frustrating it is living with distressing symptoms and having no diagnosis. Mitzi’s suggestion of physio is also well worth pursuing. Come on here whenever you want… might help to see you are not alone with your symptoms… and the best of luck getting a diagnosis. Take care, Pat xx