Hi All,
Just an update on my dx'd undx'd situation and that of my new NP as point person in my neuro's office.

She actually called my on last Wednesday afternoon. I didn't have time to post then because I was getting ready to go on vacation the next day. She had gone over my chart with a fine toothed comb and it is now about an inch smaller than before. The NP reviewed everything they had received from the MS specialist and actually didn't agree with many of her findings. We discussed the different brain and spinal diseases that could be in play here just to keep our options open.

The NP is now ordering all of my MRI's and CT Scans on DVD from the hospital so the senior partner can see them for himself. I just learned that I did indeed have lesions according to the radiologist reports. She does not want to leave any stone unturned in this search. Ironically, the neuro and the NP feel that, depending on what the MRI's and CT scan show, that I may indeed have A-Typical MS and or a genetic disorder and I may be the first in my family to show symptoms. A-Typical MS, wouldn't that be a hoot?

Cheri Binns emailed me an article and link to a website for a Dr. Hughes in the UK who has developed and identified the Hughe's Syndrome or "Sticky Blood Syndrome" which can be tested with two to three simple blood tests. The NP researched this and learned that I had never had these tests and had sent me a lab slip to have them tested. He has found that many people with what appears to be MS only have this syndrome and it can be treated with blood thinners like Counadin. Wouldn't that be great? The NP feels I don't really fit the syndrome's profile but the blood test should have been done long ago. We'll see.

All in all, very good information and the NP is really being progressive and aggressive on my case. I love that feeling.

So Google Hughes Syndrome and see what you come up with. Print off the info and give it to your neuro on the next visit and make sure you have had these blood tests done, just to be sure.

Yes! I'm finally in relief mode and going with the flow. Thanks for all of your support and taking the time to read my post.