My First Symptom Was In August 2011. Diagnosed In November 2012My symptoms all started in Mid August of 2011. I had Bell's Palsey on the left side of my face. When I first noticed I was really scared, I thought I had a stroke or something. I went to the doctors and they said it was just Bell's Palsey. They put me on steroids for a month and then it was gone.
So nothing happened for a while, I got a job as a support worker for people with Autism, dating etc. Then one day while I was at work was trying to whistle a tune but I couldn't, I had noticed that the right side of my face was paralysed but wasn't as severe as the first time. I went to the doctors again about it and they thought it was strange I had it again, was given steroids again and referred to the ENT (Ears, nose and throat clinic) in early June.
I decided to take a trip to Cardiff in May. While I was there I noticed the vision in my right wasn't right. The central part was all blurred (so blurred I couldn't see anything). When I got back home rang the doctor, was referred to 2 different hospital. The last one I stayed in for week where they did different tests (lumbar puncture, MRI, CT, ultrasound, X-Ray, Blood tests). To test for tumours, MS, neuro behcet's, neurosarcoidosis, Lyme's Disease (As I had come back from America on an Internship a month prior to the first symptom). Was put on an IV of steroids and with that my vision improved. From then on was seeing an opthamologist, but my sight had improved and has now cleared.
So nothing happened for a while until July when I noticed that my right leg was not moving. When I was walking, I was dragging my leg. Stupidly I thought it would eventually get better as I really did not want to go back into hospital. But it got to the point that my balance was affected and my speech was beginning to slur. So I went to the doctors on the Sunday in the hospital. Was admitted for a second time, and was told it was probably MS. I was doing physio which improved the leg and steroids again. I had a full MRI scan where they do the head and spine. For MRIs they found lesions in the brain. I had a second lumbar puncture test, which showed an increase in white blood cells. After that I left hospital but was told not to go to work for a month after leaving hospital and was on SSP for that time.
During that time I was referred to the Queen Elizabeth hospital in Birmingham for a third lumbar puncture test. Where they did tests which they couldn't do at my local hospital and was sent on my way after. Prior to this the neurologist had put me on a course of Predisnilone 40mg (which I am currently on) which was to be take after the lumbar puncture test.
A week after the procedure, I noticed pins and needles in my left hand (which I still have but not as severe) and leg (which is gone).
Then a couple of months passed and asked to go to the QE again for an neuro angeogram, to look at the blood vessels in my brain which came back clear.
So to now, the neurologist I am with has said we are working with Neurosarcodosis. From the MRI scans of my brain he can see there are lesions which may be causing these relapses but the steroids are helping greatly. Eventually he wants to lower the amount of steroids I am on.
It's been difficult for me as the constant reminder that I have it is felt in my left hand. I worry it won't get better and that when I talk to people about it, they won't understand as they have neither heard of it or experienced it. It would be nice to have someone to talk to that is going through a similar thing or who has gone through it and made a recovery. Sorry if there are grammar or spelling mistakes.
gazza2706 22-25, M 0 Nov 17, 2012