Three years ago I went through symptoms typical of Encephalitis,with an aftermath of rather MS type symptoms, was told probable Encephalitis five months into recovery, left with some permanent spasticity/ balance, tinnitus, cognitive probs and finally put down as FND a year later. I had an MRI in early illness that was clear and was thrown out to psychology with no medical support. An EEG at 10 months ( which was very late as was supposed to be at the same time as MRI ) which I was told normal but later found out had abnormal slowed waves. No further tests or physio was offered.
I did manage to get back to work at six months ( cleaning ) on greatly reduced hours and remained relatively stable for 2 1/2 years.
Three months ago, I had a severe UTI which rapidly progressed into sepsis, prompting a two week hospital stay on IV antibiotics and oral follow up. During this time , I went through many of the symptoms I had three years ago plus some new ones, which has lasted around two months. Hospital refused to acknowledge this, treating only the sepsis. I am now in month three and still struggling with worsening of spasticity and weakness, new spasms in back and right arm, permanent sweating, huge post exertional fatigue and greatly slowed passage of digestion, causing a weight loss as I feel bloated/full and have little capacity for bulk.
After 3 visits to GPs, I finally got someone to listen and was put under investigation, suspecting MS.
Today, I have gone back to get blood test results.Basic bloods are all fine. I was then told that because nothing was showing on bloods that the GP was unable to help me. To me , that is like saying ' You appear to have a broken leg but your bloods are just fine so we will not bother to x ray , just carry on as you are and see how it mends ' !
What happened to 'under investigation' ? I suspect that someone in authority at my health centre has pulled the plug. Shame, as my GP was enthusiastic and in agreement with me on suspecting an underlying auto immune cause at the previous visit.
I have to admit I am gobsmacked, feeling like the rug has been pulled out from under my feet.
Not sure where this leaves me - I have a way to go before achieving my previous level, independent of my stick so cannot go back to work yet and am also dealing with other new problems that generally make me feel ill and exhausted a lot of the time.
Wow, NHS, just Wow ! Unbelievable.