Hi, I’m new here and hoping to find other people who can relate.
Over time i’ve been experiencing symptoms that have been debilitating but with no real explaination as to why they are happening.
For over a year off and on i’ve been experiencing fatigue, brainfog, headaches, twitches, eye disturbances, muscle stiffness and headaches.
However, in the last few months my health has really deteroriated to the point i’ve been unable to work. I’ve been having so many issues all at once along with other usual symptoms - voice loss, chest pains, tremors (internal and external), twitches, pins and needles in my feet and hands, a constant ‘tv static’ feeling in my legs. Burning and crawling feelings in my skin and hearing sensitivity.
I’m already under ENT for the voice loss and ive been referred for speech and language therapy which i can expect to recieve in 12 weeks.
I’ve had a multitude of tests, kidney scans, ct scans, gastrointestinal tests etc and there is nothing glaring that is being picked up.
I have been backwards and forwards to the doctors and have felt like a hyponcondriac despite having very real symptoms.
To me, my symptoms really align with MS. My GP has agreed that it probably is a neurological condition and has now referred me. But i’ve been told it will be months until i’m seen.
It’s just such a horrid waiting game when you feel terrible, day in, day out without even a clear diagnosis.
The financial impact is also a huge worry, as SSP is not a lot to live on without a diagnosis or an idea of when or if i’ll be able to return to work.
I know it’s just a matter of patience, but it really does suck. I just feel miserable and defeated and wanted to share my thoughts hopefully with people who get it.