[kat west]

I have a question? Has anyone Known of anyone that shakes badly from a rare brain disease? It started in my son when he was 13 years old. It took the Doctors 5 years to find out that a walnut size mass in the left side of the cerebellum had turned to water. The mylum sheath around the Nerves has desolved into water. He has a full body shake like Parkinsons patients have, but the only part of his cerebellum is damaged. In 2001 they did some deep brain inserts into the Thalmus Gland, But now seven years later, the wires have become kinked and the Circuit is not sending a signel to his brain, what
they propose to do now is more Brain surgery to take out the Implants that are no longer working. and create a leasion on the thalmus gland. We are Being told this procedure will work for his shaking, but it won't do much for the balance problem. He will still stumble around the house, like a bull in the
china Shop. He is 37 Years old. None of the Doctors have seen this kind of damage in a young man. They say he has a one of a kind Disease, and they are trying this procedure to see if this works. He has Stumped the Doctors in Portland oregon, and Vancouver Washington. They call him a one of a kind
orphan disease that is genetic in order. Somehow when the hormones Kicked in, and then they didn't function right, His only hope is for stem cells to repair the damage this disease caused. All of his doctors are really nice. They are Doctors from all over the world practicing at OHSU. As his mother, it really makes me feel badly that his father and I did this to him. Genetics are awful things when they don't do what they all suposed to do. The disease quit when he was 17 years old, and no further damage from one MRI to another

[mrsD]

Please don't fixate on the "genetic" answer by the doctors. They often say this when they can't think of an answer for you.

When lesions appear in the brain, they can involute to an empty space.
This can come from a trauma (or small stroke). Or infection. There are certain parasites that
go to the brain and form holes.
example:
http://www.medterms.com/script/main/...ticlekey=18494

If you buy ground beef, and the store does not clean the equipment properly, you can get this!

So please don't feel genetically guilty... it may not be genetics at all!

[michael178]

Say hello to Dr Grompe for me, at the OHSU metabolic lab.
The good thing about genetics is that we are all one of a kind.