Cerebellitis and confusion still rules the day

Posted by myowndiary00 @myowndiary00, Feb 21, 2017

I have a condition called cerebellitis and it is like the yellow fever or the black death of its' day. It's almost impossible to diagnose because the origin is so incredibly minute that it's difficult to comprehend. I was struck with the condition two years ago and it hit me like a ton of bricks, with no cure in sight. All of my muscles began to rapidly deteriorate and I was in and out of the hospital for over two months. I was seen by over 20 doctors and at the time, was only able to rely on my sense of smell. So, the illusion of being able to feed myself again, walk again, and even hold my head up with my own power seemed impossible. I'm now on the other side of that life and death situation and am able to walk and get to work again, but I wouldn't wish that hell on my worst enemy. And yet, through all of this, I couldn't eat, could barely drink, and through my recovery, I began to experience bouts of back pain and extreme nausea. I decided to give up gluten as a result, but I have had subsequent occurrences. Are there any other lifestyle changes that you all could recommend that might help this condition or do you think that this is another condition all together?

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 22, 2017

Hello @myowndiary00,

I cannot begin to imagine how devastating this must be for you! We are so glad to have you as part of the Connect community.

Here is some information from Mayo Clinic, which I hope you will find helpful: http://mayocl.in/1APKXxA

You might also wish to view these discussions taking place on Connect:
Falling for no apparent reason: http://mayocl.in/2meBrQf
Falling: http://mayocl.in/2mesXZz

In the meantime, I'm confident that @callalily74, @ellenmandes, @trainwreck54, @oceanfun1, @rosesareredmylove2016 will also join in with their insights.
@hopeful33250, do you have any thoughts that might help?

@myowndiary00, have the doctors recommended any adaptive devices such as communication aids? Are there any medications that may ease your symptoms? You seem to be a strong advocate for your own health, and that is one of the most important steps you have taken on your journey with cerebellitis.

Teresa, Volunteer Mentor | @hopeful33250 | Feb 23, 2017

@myowndiary00 i am so sorry to hear of your many symptoms. This has to be very difficult! I am glad to hear that you have shown improvement in many of the original symptoms. You do not mention exercise or physical therapy. As a result of a Parkinson's disorder, I also have balance problems. Maintaining an exercise program that involves stretches and some strengthening exercises will help immensely. You might ask your doctor for a referral for PT related to balance. I would also be interested in knowing if you have any meds for your symptoms. Sometimes, just the right combination of meds can work wonders. Keep in touch with Mayo Connect, we would enjoy getting to know you and following your progress. Teresa