I posted a short post over in the neurology forum, but I thought I'd givge the works here.
At the start of April I got what I thought was a cold or flu-like virus. For a week or so I had a headache, nausea, and general ill feeling (though had no throat or ear symptoms). After a week, the headache was so severe, and photosensitive, that I went to a GP.
She insisted it was a sinus problem (I get the occassional sinus headache and know what they are like) and prescribed a steam room for me. I went back the next day as I was feeling worse, and saw another doc. He gave me antibotics. The course was 5 days and it did nothing, so he gave me stronger antibiotics - which I reacted to and got violently sick. He then thought it was a virus so just told me to rest.
By this stage the headache was so bad I could hardly think or function. It suddenly lifted, and I got a kind of boring hot pain (like a red hot pole being forced through the back of my head and out my eye); it was very short, and I had to sit down. When I stood up, I realised my balance had gone a bit. I got several more of these headaches.
Within a few days my balance was so bad I looked like I was permanently drunk. I went back to the doc. He thought it was Menieres and gave me betahistine. A week later no effect, on calling him he said even one dose should have helped. My balance was getting worse, I was falling, and I was generally freaking out. He wrote a referral letter to neurology and sent me to A&E. When I went there, a doctor did various neurological tests and apart from the severe lack of balance everything seemed fine.
I got put on the waiting list to see the consultant, but had to go back to A&E a few days later as my balance was degrading so much that I had injured my head and hands several times by falling. I got a CT scan, it was all fine.
By now my typing skills had severely degraded (110 WPM to index fingers), as had my handwriting.
Eventually I got my consultation; saw a doctor and a consultant. Both were pretty baffled as every examination seemed fine (all my bloods from A&E were perfect, too). By this stage I couldn't walk even a few steps without having a handrail to hold or wall to lean on.
I should note there was no dizziness at all, just this loss of balance.
I got admitted to hospital after a while, there I got an MRI of neck and c-spine which was clear, more blood tests (including B12), and evoked responses tests (visual and somatosensory of hands) - everything was fine. My balance was a bit better, but I was also getting tingling/pins and needles in my hands and feet, fatigue (which I put down to hospital boredom), and seeing a LOT of flashing lights and black spots.
As there was nothing obvious they could see, I was sent home.
I saw the consultant again four weeks later (about two weeks ago). My balance was markedly better, but the pins and needles was worse - including on my scalp and face, which really worried me. I also had some cognitive problems - my mind felt slow, I was forgetting a lot of things, I had difficulty with numbers. My typing and writing had improved a lot.
The consultant felt I was gradually getting better but probably having a bad patch, and diagnosed me with cerebellitis, saying that it was very unusual. The next step was a lumbar puncture, but he said he didn't want to do one so long as I was getting better.
Over the last two weeks, I think my balance has either improved a bit or stayed the same, but the original severe headache came back. I also started to get intense pains like white hot needles in my hands and arms when I typed, moved my hands much, etc. And a throbbing, very bad vascular type headache if I exerted myself at all, either physically (even slowly going up stairs) or mentally. I had severe fatigue - needing to sleep 10+ hours, but then being tired enough to sleep again after a few hours.
I got prescribed neurontin for the nerve type pain; so far it seems to be working well, though some pain is still present. I was also given tramadol for the headache. I've had it before and don't like the side effects, so am just taking it occassionally in small doses to take the edge off.
Worringly, over the last few days I feel like my muscles have gotten a lot weaker. My legs have been buckling, and I often feel like I can't even lift a glass or fork. The effort it takes to type is huge, and I can't lift certain heavy things that I used to be able to lift with ease.
I don't know if the headache, electrical pains, muscle weakness, fatigue, and cognitive problems are just a sign of slowly getting better, or a sign that it's not cerebellitis, or a sign that I'm just broken for life, lol.
Especially with my diagnosis being something quite unusual, it's hard to get a handle on what to expect.
Anyway, if anyone has any comments or questions or ideas I'd love to hear them!