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Cerebellum Atrophy
My husband has been diagnosed with cerebral atrophy. Is there anyone with similar diagnosis? In January of 1915 he was given 3 to 4 years to live.
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Unfortunately she isn’t and now they are saying they aren’t going to do the ivig treatments because she wasn’t improving enough. She is now unable to walk at all and her speech is getting worse. We have actually reached out to Mayo Clinic in Minnesota and need to request her medical records before they can move forward 😰😰
Thank you for responding. The doctor at Mayo Clinic took many other tests but no spinal tap. He is progressing as the doctor said he would. Wheelchair bound at this time, but he has been tested for gluten and it came back negative.
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1 Reaction@howardjames Noreen, I have MRIs showing cerebral atrophy, which can be present in a number of brain conditions. The 1st few neurologists told me I did not have what my primary suspected: Hydrocephalus. This is a condition where your cerebral spinal fluid (CSF) does not drain out of your brain like it should, pressure builds on the brain and kills neurons. Finally, I saw a neurologist who knew how to diagnose hydro from an MRI. Such neurologists are rare where I live. Most use tests that have a significant false negative rate: the spinal tap (15% false negatives per my neurologist) and the lumbar drain (lesser false negative rate). Both tests take cerebrospinal fluid out of your spine to reduce brain pressure, and you get a hydro diagnosis if you symptoms improve. Some Drs. want to see more improvement than others. Less informed Drs. sometimes rely solely on this test, when the best practice now is to rule out all other possible brain conditions. Sometimes even respected institutions have some less informed Drs. I would ask the diagnosing Dr. if (s)he ruled out hydrocephalus and on the basis of what. Many of his symptoms can come from cervical myelopathy (bad spine features impacting the spinal cord, possibly because the canal is congenitally narrow). I am wondering if his entire spine has been reviewed and spinal causes ruled out. You might ask. There is at least one case report in the literature of a person with cervical myelopathy getting a misleading report from a lumbar drain as a result of having cervical myelopathy. The title is Cervical Spine Disease May Result in a Negative Lumbar Drainage Trial in Normal Pressure Hydrocephalus. Hydrocephalus is a little better diagnosis than atrophy in that surgery (shunting) can help reverse the downward slide and give you some of your life back--clearer thinking, better gait, cessation of the constant peeing that comes w/ hydro. I had untreated hydro for 22 months and still got rid of a lot of symptoms, although now I am sliding back because of the spine problems that went undiagnosed while everyone was concentrating on the hydro. You have been dealt a difficult hand--it's a good thing that you have an inquiring spirit! Also, you might get a free subscription to a magazine published for patients by the American Academy of Neurology, Brain and Life. It can be read online, but you can also find it online, subscribe and request they mail you hard copy. It can give you a nice perspective on the whole area of brain conditions, and is written at the layperson level. Sorry, as a new member,, I am prohibited from posting links at first. Hope you can find from my information. Will post them later when I am permitted, if I recall. I have short term memory loss from the Hydro.
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2 ReactionsHello @chiefsfan75
I hope your granddaughter is experiencing some improvement since her hospitalization.
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2 ReactionsHello @ace123
I was noticing that your son had an appointment this week. I hope the appointment provided you with some answers to your questions about your son's condition.
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2 ReactionsMy husband has been diagnosed with Cerebral Brain Atrophy. He was diagnosed at Mayo Clinic. He was given 3 to 4 years to live. At that time he was walking with no problems. It effects the balance and speech, and swallowing . He is now in his 4th year. He is wheelchair bound and has more trouble with swallowing. The doctor at Mayo said he would probably die of
Aspiration pneumonia as he has trouble swallowing.
I am so sorry about your son. My husband is 79 and at least this did not happen while he had a job and child in college. We are very grateful for that!
Please keep me informed. We have only found one other person who has this and she is in South Africa. I wrote to Colleen why there weren't more with this diagnosis and she said that it's very rare.
Noreen (wife of Howard James)
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2 ReactionsMy son just turned 30 and was diagnosed with Cerebral brain atrophy. We see a neurologist tomorrow to explain this. I am terrified and dont know what to expect
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2 ReactionsMy granddaughter just recently got out of the hospital again they gave her 5 days of ivig treatment with a steroid iv boost. She goes back October 2 to see if it will help slow down progression and help the ataxia at all
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2 Reactions@colleenyoung
@karendam Mine is not shrinking, but filling up with dead protein Fibrils. I have hereditary Gelsolin Amyloidosis. Look my story with tests, timeline, etc.: https://bit.Ly/1w7j4j8 under Amyloidosis. The safest file is a PDF file, but otf is also there.