I need help! will try to keep it concise. 7 months ago I really hurt my back lifting at work (not sure if related) started feeling better then right hand cheek started with numbness and pins and needles feeling. gradually right side has lost most sensation, lots of strength and a lot of coordination. when tired my face even goes very flat and droops. Suffering tiredness,pain kind of deep down in the bones and loss of balance and concentration. Had some vision disturbances but they don’t last. Had head mri which was clear but now waiting another month to see Neuro. Gp and ot seem to see ms (my dad also has it) but Neuro not really committing to anything so very much in limbo. Work is getting very difficult as so lopsided but can’t tell them what’s going on and how long it’ll last. sorry to have gone on a bit but so frustrated 7 months down the line with no let up of symptoms if anything they are worse as I am trying to get on with work, house and 3 kids!!
I should probably add that I have a number of possible ms symptoms including heat causing worsening probs, some muscle spasms and jitters and weakness and heaviness in affected arm and leg. stairs are very difficult and I know I try to compensate meaning I use my pelvis and back a lot as my right leg doesn’t really lift!
Hello and welcome to the site If it is MS and nothing weird has ever happened to you before that you’ve recovered from then it would be primary progressive MS. This has different diagnostic criteria to the most common form of MS, relapsing remitting, so my view would be that you need more tests done before MS could be ruled out. The diagnostic criteria are called the McDonald criteria. According to these, to be diagnosed with PPMS, a patient needs to have two of the following: at least one lesion in an area of the brain typical of MS, at least two lesions in the spinal cord, a positive lumbar puncture. This is in addition to a year of increasing symptoms (although it can be less than a year if the neuro believes the symptoms will continue). So, as you can see, you need a spinal MRI and a lumbar puncture. There are other possibilities though so do try and keep an open mind. While you’re waiting for your neuro appointment, it would be worthwhile getting your vitamin B12 levels tested as a B12 deficiency can mimic PPMS. I hope you don’t have too long to wait for some answers. Karen x
Thanks Karen
I may have had some sort of episode 11 years ago after having my daughter but difficult to say after so long, I was also only 18 at the time and got dx of fibromyalgia. seemed fairly normal for over 8 years then all this. I was under the impression that symptoms would come and go but didn’t know how long they may last. I know everyone’s different just wish I could get somewhere. 7 months of feeling uselessuseless when I’m not even 30 is really taking its toll got a crutch for walking to ease fatigue and leg difficulties which I’ve begrudgingly realised really does help! just feeling in limbo like so many others on here and very little progress.
Katie
One of the learning steps is using whatever helps - it’s tough sometimes, but better to be able to do what matters with a little help than not be able to do it at all
It’s possible to have back to back relapses and it’s possible to have long relapses, but a single attack wouldn’t generally still be getting worse after several months. There’s no such thing as a typical case of MS though, so who knows!
Hang in there.
Kx