Hi all, new poster.
I'm 27 years old, female. Have had bouts of assorted ill health especially when I was younger, but have been totally healthy for the last couple of years (except for the occassional cold/flu). Over the last ten years I've also had 7 concussions from playing hockey and ice hockey, most of them very minor. I only saw a doctor for a couple, due to general dislike of doctors, so they aren't on my medical records.
I've recently been diagnosed with cerebellitis. Unfortunately there are very few (read: no!) cerebellitis resources online, but I gather it's related to encaphalitis so I thought I'd post here.
Anyway - at the start of April I had a viral-type illness, headache, nausea, general ill feeling. Didn't think much of it. The headache got much worse in intensity and I became photophobic, headache was also worsened on moving my head. Saw a GP - she diagnosed a blocked sinus, despite me having no throat problems and no face pain. A day later I felt worse so went to see my own doctor - he thought it was a bacterial infection and gave me antibiotics. They didn't work, so 5 days later when the course was done he gave me stronger antibiotics. I had very bad side effects, after taking one pill I basically vommitted for over an hour, then ended up semi-conscious and lying on the floor for a couple of hours, unable to move.
The doctor said to stop taking them and said my headache and nausea (which were still continuing) were probably viral.
Maybe a week after that, in work I got a sudden headache like a cluster headache - a pain like something hot boring through the back of my head and out my left eye. I had a few of those that day. After one (maybe the first?) I had to sit down from the pain, and when I tried to stand my balance was markedly affected.
This worsed for a few days so I went to my GP, by this time walking like I was very drunk. He thought it was Menieres and gave me betahistine, despite me having no ear symptoms and no dizziness (it was a pure balance problem). Balance got worse over the week, I found out that betahistine should have a fairly quick effect if it will help at all, so my doctor wrote me a letter and sent me to A&E.
I had a neurological exam there, only thing that showed up was positive Rombergs sign (I think the current count is I have fallen into the arms of 8 doctors, lol). All bloods were normal or great (apparently my bloodwork showed me to be very fit and healthy. )I got put on a waiting list for a consultant and CT scan and sent home.
Three days later I was worsening and went back to A&E. My A&E doc had a neurosurgeon friend around, so he saw me too - thought it was a basal ganglia problem but didn't know what. I got a CT scan, it was normal. Worryingly my typing speed had gone down from 110 wpm to nothing, and my co-ordination in general was getting worse.
A couple of weeks later I got seen by a neurologist and consultant. All their tests seemed normal, except for my severe balance problem. (By this time I had fallen repeatedly, including whacking my head on the wall of the shower twice.) I was starting to see flashing lights but didn't think much of it.
I got admitted to the hospital about two weeks later, and stayed for 8 days. I had a brain and c-spine MRI which was normal and evoked responses tests which were normal. My blood pressure was lower than average but still a bit high for me, and my heartrate was higher than average and also high for me - but nothing worrying. A batch of blood tests, including for B12, was all fine.
My balance had improved a bit though I was now seeing flashing lights constantly, and I got sent home and made an appointment to see my consultant in four weeks.
Four weeks later my balance was almost fine, but a constant headache had returned, I was seeing lights everywhere, was getting stabbing/electrical pains in my hands and arms, and pins and needles in my face, neck, and back. I also had intense fatigue, needing to sleep for 10-12 hours and wanting to sleep again a few hours after waking. Most worryingly I seem to have some cognitive problems, it's hard to explain but I feel "stupider" or slower in thinking.
I saw my consultant again (I think two weeks ago), as the balance was improving he didn't want to do an LP, just wanted to leave it for a while so I am to come back in September. His provisional diagnosis is cerebellitis, which he said was very rare (I gather this from scant evidence on Google, too).
As I am now, my muscles feel very weak, I feel listless and fatigued all the time. I have stabbing pains in my hands and arms and tingling in my face and back, though neurontin is helping some with the electrical pains. I have a constant and severe headache; the only thing that will touch it is tramadol but I don't want it because it will make my fatigue much worse. Balance is improved but not nearly what it is at my best, and I have some cognitive difficulties.
Right now I'm in the position of just sitting and waiting for my next appointment. I'm concerned, even if I get better, that this could be an episode of something recurring. I'm especially worried that as my balance improved my headache came back, along with extreme fatigue - I don't want my life to be a never ending circle of "can't walk" vs "can't think", lol.
Anyway - does anyone have any comments, or can point me to some resources re cerebellitis? Or any ideas for alternative diagnoses for me to look into?