Cerebellitis?

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?

Thanks!

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Hello mac33...

We're a group of encephalitis survivors and caregivers... no medical opinions or authorities here, unfortunately. I've searched using google and found quite a number of links... but I can see that they are all vague and not too helpful. Perhaps you should start a group here, hoping others will find you? And (of course), feel free to share your issues here... hopefully we can help.

Acute Cerebellar Ataxia (cerebelitis)
http://www.upmc.com/healthmanagement/managingyourhealth/healthreference/dis eases/?chunkiid=191914

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We've never had someone here with a diagnosis of something having happened in just their cerebellum.
But having inflammation there, next to the occipital lobe and the brain stem would correlate to your visual and movement difficulties.
In general, I would understand the walking, talking, eating, coordination of movement aspects. But the cognitive aspects puzzle me.
But with the long history here of our friend Anne, I have to say that British Neurology puzzles me in general.
Not being a doctor of any sort, in fact I am demented, you need to know I have no business telling you anything.
That said,
If you were ill from this in April, and it was more focused than diffuse, and you are seeing some improvement, I say give: continue working with your doctors and give it a few more months.
What isn't mentioned here is what ticked off your inflammation? Is the inflammation past? Did you have encephalitis and are now dealing with damage focused in the cerebellum?
Well, I wish you luck.
Have you been to the "London Hospital" for all this yet?
-dannon

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Wendystation, thanks for the link. Unfortunately like you say there isn't a lot of specific information; I think I found a site somewhere giving a "one in two million" frequency, and my neurological consultant said he's never seen a case, which probably means there hasn't been any in Northern Ireland in the last 10-15 years at least (as there is only one neurology centre here).

Dannon - British health care in general is puzzling ;-)

The cognitive issues puzzle me a bit too, as I can't see how the cerebellum would affect that. However, given my intense fatigue I am probably having some level of poor sleep, and cognitive problems could be the result of that rather than the result of cerebellitis. I'm also on tramadol and neurontin for the headache and electrical pains, and they both make me a bit "spacey" - so I'm sure that will have a cognitive effect for a while.

My consultant thinks that my initial headache and nausea were an infection of some kind, and either it got into my brain or an immune response caused the inflammation.

Unfortunately I gather with any kind of brain inflammation, so long as there are no life threatening complications happening (which for me, thankfully, there haven't been) sitting and waiting for a few months is all there really is to do. With MRI and CT scan clear, and with the initial balance problem resolving itself, that rules out the grim nasties like a stroke or MS, so there's not much to do. It's just stressful to have to sit and wait, especially as I don't have the option of any time off work, and I can't really exercise (much less play sport).

Thanks for the replies, guys :-)

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mac I don't know anything about cerebellitis, but many of us have balance problems. That there might be some ideas to help you. If it is getting better maybe you will be able to do sports again sometime. I hope you can.

Michelle

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how about swimming...access to pool?
i just know finding some outlet can be helpful mentally as well as physically.
take care and know that you are not alone.
tish
meningitis 92 enceph 03

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I've just been looking back on my discharge form and my diagnosis was meningoencephalitis / Cerebritis, I assume it means either / or rather than both! Anwyay my point is I noticed you spell it "cerebellitis". Is that different? There was plenty of info on "Cerebritis" and I can only assume its very similar to meningitis / encephalitis.
I am probably barking up the wrong tree, but I thought I'd share it none the less....
Graham

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Hi Graham,

I just did a little Googling and apparently cerebritis is simply "inflammation of the brain". "-itis" is inflammation and I take it the "cere-" refers to the cerebrum - so cerebritis is possibly specifically inflammation of the cerebrum.

Cerebellitis on the other hand is inflammation (-itis) of the cerebellum (cerebell-) - the part of the brain that deals with, among other things, co-ordination and integrating information from the senses.

Thanks for the info, though!

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Hi Mac33,
I was diagnosed with post-infectious cerebellitis in late Sept. 2008. I had it tough...I'm still feeling the effects of my illness. I'm new to the group & would love to know what helped your recovery. Are you back at 100% Are you still playing hockey or any sports?
I am able to go to the gym and walk on the treadmill, as long as I'm holding on. My PT tells me it's not a good idea to go on the treadmill since I'm giving my brain a mixed signal. My brain is telling me that I'm walking but my eyes are telling me that I'm not! My big problem is the communication between my eyes & my brain.
I have been cross country skiing & snowshoeing this winter. (with poles of course to keep my balance) I feel proud to have achieved these goals...my goal for future is to play hockey again, volley ball, boot camps...
Hopefully hear from you soon,
Rachelle

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Hello Mac33,
I have just found out that another word for cerebellitis is ACUTE CEREBELLAR ATAXIA. You'll find alot of resources online.
Take care,
Rachelle

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Rachelle the idea of swimming is a good idea if your not terrified of water. Just make sure you have someone with you.

Your eye problems seem worse than mine, but when I get the cross vision or extremely blurry vision and I'm home I walk around with my eyes closed and my hand on the wall. I don't know if that would help you, but hopefully your find something that does.

Michelle

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Mac33
Hi My 5 year old son was just diagnosed with ADEM acute disseminated encephalomyelitis. Check it out adem.org had good information.
My sons symptoms sounds close to yours. He started with walking funny off balance and he had severe pain in his legs. In 3 days he couldnt walk at all. The checked him for everything and then did a spinaltap that showed elovated white cell count. Then they did a mri. It showed inflimation in the cerebrum brain stem and the spinal cord. It's rare about 10 cases a year they say. Have your dr look into it. Good luck

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