Since posting last June I have seen the neuro, had full spine neck and brain mri, which showed lesions in my brain, although ‘not classic ms’. Spoke to the neuro on a telephone appointment fully expecting to be discharged (very used to being told everything is down to fibro diagnosis or that it is in my head!) However, she said there are more lesions than they would expect to see for someone of my age and will be arrying out conduction tests and a lumbar puncture, also clotting blood test. I was thrown and didnt ask any questions and now wish I had asked more questions. Does everyone with MS present with the same type of lesions. I assume there is enough doubt to continue with more tests, my husbands tells me not to worry they are just discounting it. Am not a big worrier but after years of feeling there was more to my health than fibro, and my health deteriorating badly in the last 18 months or so, I dont know what to think. I feel as if I should be relieved i am being taken seriously finally but I just feel very confused right now. Sorry for the ramble, just needed to try and put my thoughts down
Best wishes to you all x
You’ve really had a time of it lately. Throughout Lockdown as well, which can’t have helped. I’ve just had a quick whizz through your posts from last year. It does seem that there’s more than fibromyalgia going on for you. I don’t necessarily think you’ve been getting the greatest amount of support with your symptoms.
It’s a positive thing that now you are being sent for further tests. The MRI picture isn’t the same with everyone diagnosed with MS, so I doubt you can take the ‘not classic MS’ or the ‘more lesions…due to age’ comments too much to heart at this stage. It’s a good thing the doctors are having more tests done.
It certainly sounds as though once you get through the barrage of tests you have coming up you’ll get a diagnosis of something. And it probably won’t be fibromyalgia. It definitely appears that what is going on with you is more neurological than anything else.
Have a look at https://mstrust.org.uk/a-z/lumbar-puncture This might help you to prepare for the LP. It’s more nerve wracking facing the prospect of a lumbar puncture than the actual procedure.
Keep posting on here, it sounds like you need some comforting support right now.
Thank you so much Sssue I genuinely appreciate your reply.
I now have test dates which is great, the evoked potential tests on Monday and lumbar puncture on the 19th. I’m not expecting any diagnosis despite neither the neuro or I expecting them to find lesions when i had the MRI. They did but by no means diagnostic. Not sure how I feel right now I really really dont want it to be MS but god do I want some answers to how i have been feeling and deteriorating on and off for over a decade now. I fell walking up the stairs on Weds and faceplanted the stairs and then tripped today and fell in the kitchen. This is a new thing for me and so hoping its coincidental. Feeling really low right now