Feeling so frustrated! Not really sure if what I have is MS but know it’s something and felt I needed to write my frustrations out and know that a lot of you have been here so felt as good a place as any.
I had symptoms from last December which started as just eyelid twitching and constant ear pain. I’m not going to bore you with the ins and outs as there where lots of symptoms physical and cognitive that would come and go so I was in and out of the DRs etc.
at the beginning of the summer I got dramatically worse and resulted in speech issues, vertigo, muscular spasms and shortness of breath so was referred to neurology reluctantly as my dr still felt it was all in my head! Unfortunately as the dr was reluctant this vibe was passed on through the referral so instead of seeing the consultant I saw a specialist under the consultant!
She did however send me for an MRI of just my head (without contrast) which did come back normal and signed me off. My dr (different dr than the original) was not to happy about this as by now my mobility was affected and so we decided to get a second opinion to be of the safe side. We went private with this as we were fed up with the NHS and I wanted to choose the neurologist this time to get the ball rolling switching back to NHS if needs be.
At the same time she referred me to the chronic fatigue clinic as felt that that was a possibility.
so the neurologist wanted further tests an EMG and ECG and to see me again after. I had the EMG and was told I would get results within a fortnight. The EMG caused lots of muscular issues and I took a while to recover. In the meantime I had the cfs appointment. I was diagnosed with Fybromyagia and M.E and they said they were pretty sure and that i fit the box. I hadn’t heard back from the EMG at this point so assumed that was ok and felt completely relieved that the merry go round was over. I had a diagnosis and I could start to work on ways I could manage and ultimately improve my condition even started going to the cfs seminars.
So what a shock I had the week before xmas when I was told by neuro that I defiantly don’t have fybro/ME but actually gave a rare muscular disorder!
No idea what it is, didn’t ask many questions as I was in shock and was expecting him to sign me off.
I’ve been to dr google and MND and Muscular Dysprothy has gone around my head but I can’t help thinking it might still be MS that didn’t show on the MRI, when I had the MRI I was having a fairly ok patch plus it was without contrast.
My next action is , more bloods (had stupid amount of blood but this time it’s genetics), muscle biopsy - not looking forward to this has anyone had one?, further MRIs but to include chest and arms/legs. And been booked into MS centre to help with my breathing.
Feeling really scared I’ve gone from hoping it’s not ms to almost hoping it is. I know that might sounds terrible but now I know it’s something I just want it to be a something that’s not going to kill me
I’m having a bad patch and silly things I used to take for granted I’m finding really hard to the point we are now talking about mobility aids which is a really hard thing to even think about.
I used to be so active, I have two children as well as a dog. We are a very outdoor family so to not be able to get about is really hard.
I just gate being in limbo, just want answers!