I've been in limbo for 10 years now. I had my first episode of symptoms not long after my daughter was born. It started with sensory symptoms, hot water feeling cold on one side but not the other, pins and needles, numb patches and then progressed over a week or so to problems walking and finally what turned out to be optic neuritis.
I saw a neurologist who said he was almost positive it was ms. He ordered an mri scan and a lumber puncture. The scan was clear but the lp was positive for oli whatsit bands. He was still sure it was ms but obviously couldn't confirm without the scan. I've also had a positive vep test.
Anyway, to cut a very long story short, I saw another neuro who basically said there was nothing wrong and i was making it up for attention. I left the search for a diagnosis for about 5 years and just got on with trying to live with the symptoms and episodes as they occured. I had another episode of optic neuritis and various problems with mobility, bladder, fatigue etc. until 2011 when i lost all the feeling on one side from my finger tips to the top of my head and down my shoulder and chest.
I was refered to a new neurologist who i saw the end of last year and he basically said there were two choices; benign ms if the scan remained clear and cfs, but the lumber puncture results ruled out cfs.
I had another mri which was clear and i saw him again yesterday. At first he was quite happy to call it benign ms and was about to start dictating a letter to the gp to that effect when i asked him for something to help with the fatigue. Now all of a sudden i have chronic fatigue syndrome, and depression and the lumber puncture results are not significant! (and no, i can't have anything for the fatigue because he doesn't agree with the use of stimulants!)
To be honest, my head is spinning. I spent yesterday looking at cfs and i just can't make it fit. My first symptom wasn't fatigue, that developed a few years after the other symptoms started. I don't suffer from fevers or headaches, in fact i can only tick 4 out of the possible 15 or so symptoms. I'm just totally confused. I'm perfectly willing to go along with his suggestions to treat the symptoms, i.e. c.b.t., graded exercise therapy etc, because i don't know what else to do. The mri scan is still clear after all. It just felt like a very confused appointment and i've walked out of there with this diagnosis because he wants to call it something.
He hasn't discharged me at least but I really don't know what to do now (other than go along with his suggestions) I just want to feel better. Has anyone got any ideas please?