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Quote:

Originally Posted by UNDX Craig (Post 38916)

Good point Sally. I will have to follow up with my neuros on that question. You really got me thinking. What I mentioned before about the high protien level in the LP was up only to 9 but nothing else was found.

Sally, do you know of any other tests that would show de-myelinting?

Thanks for your information Sally, I really appreciate it.

I went googling and found this:

Quote:

http://www.freepatentsonline.com/4136160.html

Quote:

A specific test for active demyelinzation is based on a discovery that free myelin basic protein can be detected in cerebrospinal fluid by the use of a radioimmunoassay, and that the level of basic protein found corresponds to the activity of demyelinating pathologies. A simple method is utilized, wherein samples of cerebrospinal fluid are assayed and the results of the assay are compared with standard samples of myelin basic protein. Patients with active demyelinating diseases have high levels (17-100ng/ml) of basic protein; those with progressive pathologies have less (6-16 ng/ml); and those in remission have less than 4 ng/ml, comparable to the control population.

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I also know that Myelin particles have been found in a urine test. I assume that the demyelinating would have to be active.

A good Radiologist can see it on MRIs as well. Actually the lesions themselves show that demyelinization has taken place.

The bad news is that there are many demyelinating diseases...incl syphilus..:eek:

Craig, this is a tough situation you are in. I personally would be having a fit, because one of my greatest fears is the fear of the unknown. We all have different fears, but your situation is so baffling! I am sure you get really exhausted with it all. I am aware you do a lot of reading and research, and if I were you I would keep it up. You never know what might be brought up that might, if mentioned, help the Doctors to go in the right direction. I think sometime it is just getting to the right person who can put everything together, and I am hoping they will be able to do that for you at Duke.

I guess sometime we just keep on keeping on, and you are doing a good job of doing that. We will all be interested to know how this comes out for you. Naturally, the most wonderful thing would be if they could find something that could be completely cured and at least halted where it is.

Lots of luck,
Virginia