I was diagnosed with PPMS at “Jimmys” hospital in Leed in1994 and then again at Leeds General Infirmary in 1996 and then yet again at The National Hospital for Neurology in London in 1996. I had all the usual tests like lp’s and MRI scans many times.Despite being diagnosed three times I was never actually told for certain that what I have is definitely MS.Looking at how fast I became quadriplegic, my symptoms and test results PPMS was given as my most likely diagnosis. This as you can imagine has always had me wondering what if it isn’t. My brother has relapsing/remitting MS and there is history of neurological problems in my ancesters.but nothing like me.
I recently had to go for a fitting for specially designed seat for my wheelchair as I keep falling out of this one . Once again as I explained my symptoms to the Occupational Therapist I was asked “are you sure you have MS?”. Now this is no lie but if I had been given £1 for everytime I’ve been asked that over the past 18 years I’d probably have £30 now. Anyway the reason for this post is to ask if anyone else is so unsure of their diagnosis and have these symptoms. Total paralysis below the neckline but still feel everything and no breathing, swallowing or speech problems. Also despite paralysis I have hardly no muscle wastage even after 18yrs in a wheelchair. There are also other strange symptoms such as not perspiring even when extremely warm.
Am just a wierdo with weirdo MS?