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Mom suffering Acute Cerebellar Ataxia (Cerebellitis)
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Mom suffering Acute Cerebellar Ataxia (Cerebellitis)

Has anyone been diagnosed with Cerebellitis?  What were/are you're sypmtoms?  How was/is it treated?  Finally, did the treatments help?  My 75 yr. old mom is really suffering ...nausea/vomiting, slurred speech, double vision, jerky hands, arms and legs, balance impaired, etc.  Please share if you know ANYTHING on this!!!
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Avatar_n_tn
You deserve a big bear hug!  First, how is your mother doing?  I had this diagnosis 4 years ago (age 49).  I began with pneumonia which settled in my celebellum (symptoms began with stiff neck & shoulder pain).  The hardest part of the illness was from the last week in December thru April.  I could not walk or talk, vomited continually, had impaired balance, vision problems, on and on.  When people would visit with me, I had to put a hand towel over my head to avoid the visual stimulation which ended up making me vomit or at the least, very dizzy.  I went from doctor to doctor, ENT, Speech & Occupational Therapists, Neurologists to Universities doing studies.  I had MRI's, CT's, blood work and Spinal Taps.  It took 4 months and a trip of 800 miles for the final diagnosis.  With it all, I was told, I would either get better or I wouldn't.  There truly was nothing the medical industry could do for my virus, just assist with some of the symptoms.  I ended up taking things into my own hands.  I pushed myself, I listened to audio books and would make myself repeat the words until I could say them clearly, I worked on my coordination with a tennis ball, I had my sons take me for short drives (puke bucket ever ready).  I sat at the dinning room table playing cards with the family with a towel on my head.  In short, strong willed determination not to let this thing win, I still had 4 kids at home to care for.  It was a very long and difficult process and I can not say that my method will work for anyone but me, but I feel you can never give up.  It was difficult being a piece of furniture.  Your mind still thinks, you have something to say... but don't know how to get the words out.

Now I work full time, but am alot more careful walking and more aware of things around me that I could hurt myself with.  I still have issues with speech when I am tired, occassionally I have a hard time find the right word, but it does not stop me.  I do not drive at night, because my perception did not fully recover.  I guess I am at about 95% and very appreciative to be here.

Good luck to your mom & I will be praying.            

Sincerely,
Christy - Boise, Idaho
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Avatar_f_tn
Dear Christy,
Thank you for taking time to share your story... and what a wonderful outcome!  Your true determination is what did it I'm sure.  Since I last posted, we've had a new diagnosis...paraneoplastic disorder.  You can read more about it at http://www.paraneoplastic.org/  Unfortunately, we've been told that once my Mom's brain cells in the cerebellum have been destroyed, that's it... and that basically she will never get better.  They did say that therapy can help her learn to do things differently, but she will always have this. Your story is an inspiration and I will share it with my Mom.  Of course, we will continue with the therapy...just in case something good comes from it!
Take care and God bless,
Shurly
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Avatar_m_tn
I began feeling dizzy and slurred sppech on dec 13, 2009. Aftter lots and lots of visits to drs and hosp, i was finally diagnosed with acute cerebellititus, i am leaving alot out here...........it is hard for me to type.....i received 5 days of hemoglobulin treatmant (steroides and i dont mix) my speech got better the day after the treatment started, i went back 2 work 3 1/2 months later. oh i also had more than a week of rehab. i was better, but now i am getting worse. is that normal? is it possible to get disability (tho work has been very good, i dont how much longer they will put up with it) i am at my wits end, no one knows anything abou cerebellititus. plese help if you can and also can make sense out of my tyiping!
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Avatar_f_tn
You may want to check out this website:  http://www.paraneoplastic.org/  My mother was misdiagnosed with cerebellitis and it ended up being paraneoplastic disorder.  Which is extremely important to be correctly diagnosed as it is possible that the brain cells in your cerebellum could be permanently impaired. What you need to do is find a neurologist that specializes in problems with the cerebellum...it took us 8 months  and 3 neurologists until we finally got a correct diagnosis and now my mom can't walk, has slurred speech, problems swallowing, can't write or use hands as she has such severe ataxia.  Have you had nausea and vomiting?  Let me know if I can help if you have any other questions.
Shurly
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Avatar_m_tn
thanks or the info. have you seen the Mystery Diagnonsis with Carole Battle? I felt like i was her almost to a t. I was supposed to b tested for cancer while i was in the hospital. just now finding out no tests were done. it is hard for me to deal with drs all by myself but i am alone except for a 73 y/0 mother who does not hear ir understand. i feel so alone. could depression/anxiety be a part of thistoo? so how do i find a neuro here? i hate the one in my hometown. the 2nd opinion is in birmingham--an hour and a half from here. he does not want to even see me till i have had all tests he recommended. i have am appt to see my family md on wednesday. im sorry to be whiny but i am all alone in this or at leat i feel that way--this is when u find who your true friends are. unfortunately. oh i am 42 years old btw--single no kids
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Avatar_f_tn
Take charge!  When you go to your family dr., tell him you have been doing research and feel that you have something more rare and perhaps more difficult to diagnosis.  Tell him you need to find the VERY best neurologist in your area...even if it means Birmingham.  If you feel you have what Carole Battle has, paraneoplastic disorder, get the testing as soon as possible.  I think the only true way to confirm is have this extensive blood work that is expensive...could be covered by insurance, ours was. This is where the blood work that confirmed the paraneoplastic for my mom was done.  ATHENA DIAGNOSTICS, phone: 1 (800) 394-4493. From the blood work, they can tell what type of tumor/mass it is, if any, and then they know better where to look with a follow-up MRI or CT scan to find if there is a tumor/mass.   The key to your recovery  (all this is with the assumption you have paraneoplastic) is this:  find out if you have a tumor/mass that has set the autoimmune disease in motion, get it removed...it may be cancerous, you may have to be treated (chemo, etc.) Once that is treated then all the cerebellum issues will stop and you can start to get better.  Here is the expert on this disease:  Dr. Author Foreman...MD Anderson Cancer Center.  Assoc. professor, Neurology.  His email is: aforman@mdanderson. His phone: 713-792-2121, 713-792-7255.  Perhaps he can recommend a dr. in you area.  Most importantly, if you can get the testing done locally, do it soon, but be sure to have whatever Dr. is ordering the blood work, that they call Athena to confirm the type of blood testing needed. Most neurologists have never even heard of this, it is so rare and misdiagnosed. I know this is probably overwhelming to you, but you can do this...its not easy, but you CAN get better. Its just that time is critical...trust me on this.  
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Avatar_n_tn
My Husband has been diagnosed with CA.  This was about 3-4 years ago and he has gotten progressively worse ever since.  I have gotten him a U-Step walker, these are designed especially for neuro patients.  They are waited on the bottom and will not turn over. Go to ustep.com and check them out.  Medicare and your ins. will pay for them.  Yes you can get on disabillity with the correct dr helping.
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