Cerebellar atrophy

[tiredmom48]

My 6 year old daughter has cerebellar atrophy. She has had several Neurologists ever time she gets one they pass her off to the next guy. Recently we had an appointment with the current Neurologist and in the course of the conversatrion I learned that he had never even looked at her MRIs in the almost year and a half he has had her. His excuse was "well, I sort of inherited her". I am so upset over this and wondering if someone could answer some questions for me. The present Neurologist is running some extra test an EEG and a sleep study and I am hoping that it was just an oversight and he will now pay more attention to her case. My question is why you would not want to do another MRI (this one is over 2 years old, obtained after a seizure {status epilepticus} that put her on a vent and got her shiped to our local childrens hospital) in a case of cerebellar atrophy wouldn't you need to see if it is progressive? Should I insist on another MRI? We have a question as to wether it is progressive because of her hearing loss, vision, speech, wide gait, clumsiness. She was born at 25 wks. gestation weighing 1lb 8ozs. She suffered a grade 2 brain bleed, bronchopulmonary dysplasia, mild CP, patent ductus, gerd w/ nissan fundo and feeding tube until she was 2, surgery to correct severely crossed eyes (which has now caused the opposite problem), two sets of tubes in her ears and two other surgeries just to clean her ears out and cauterize her nose.We thank you for your time and appreciate any help you can give us.


This discussion is related to cerebellar atrophy - any help?.

[Murazaki]

I had aneurism of the brain surgery 25 years ago and was successful and without complications.  Just lately,  I felt dizziness and weakness of my lower extremities that my legs wobble when I walk.  I have difficulties in writing and I can feel that my speech slurs a bit.  I had a series of test that excludes MRI because of the metal in my head due to the surgery 25 years ago. I only had  twice CT scans and a conrast kind of CT scan. All my laboratory tests were normal including the nerve,  muscle and spinal cord.  My neurologist diagnosed that I have Cerebellum Atrophy and just lately,  gave me Steriod tablets to try if I could feel better.  After 5 tries for 5 evenings,  I have this feeling of more heaviness in my limbs and dizziness. I had to stop taking this medicine and I am desperarate,  what can you advise?  I understand that I can't completely eradicate this disease but at least,  I can stop it so that I can walk outside alone unassisted.  I am a 61 year old grandmother and before I had this disease almost 2 years ago,  I was a very active person.  I appreciate your advise.

[bt1977]

well, i am 32 years old and i was diagnosed with cerebellar atrophy at the age of 22.My life has been so  complicated because i don;t know what i  can do. Sometimes i think i can do something, like working somewhere  but it is not like that..and i end up loosing the job quiqly.hopefully ou can help me with some ideas or maybe  telling some e-mail adresses of people with the same atrophy so we can chat. i think it would help a lot everybody and me. you can resend this e-mail top  anybody you want. thank you... hope to see your reply soon

[kitty602]

well I am 33 yrs old and I have had about 6 neurologists and i keep getting passed around. I was diagnosed with cerebullar atrophy at the age of 19 and wow have things been getting worse.  I have something in my eyed I always forget what its called it nystalgma or something and its caused by the cerebellum.  I have lose of balance walk like I am drunk even though I don't drink and I am unable to read for more than 5 minutes without getting dizzy and shaky.  I have lost movement in my limbs at times and have had weakness and my limbs have also become very heavy.   I have been told by my last neurologist there is no cure and to help my dizzy and bobbing eyes and nausea that only serc will work.  I also have migraines almost daily which may be a part of this or something totally different.  I am going for more testing in january for some artery thing and in february I am going for an Emg.  Hopefully they will have more answers and they can fix something.  I am tired of not knowing and not working.