To all of my MS friends and those undiagnosed,

I received a long awaited call from my neuro's office today from the NP who has taken over and is ramrodding my case through the system.

Today she met the Senior Partner of the practice at the hospital and reviewed "with a fine toothed comb" my films and charts from 10/00 to the current set. I do have leasions but not consistant with MS, therefore I do NOT have MS. He also said I do NOT have SCA, Spinal Cerebral Atrophy. Their concern now is that I may have a form of ALS or in that family of ALS. They are going to repeat my EMG since the MS specialist at UVA only tested the left side and should have tested BOTH sides for a fair comparison. I will have that done here in Richmond, VA at their office on Dec 13th. The next step is to send me to NC to Duke University to the Movement Center for further evaluation and testing.

The neuro's are just as puzzled as I am about my current condition and what could be causing it. I might just fall into that 1% where the overall diagnosis will be Ideopathic in nature, or unknown origin. Of course this does not take my symptoms away or change my SSDI status. But, it does continue to make is a psychological and emotional challenge to keep the faith. Although the NP says they will not quit until they can explain this challenge to me with a degree of certainty.

So here I am. Not even qualified to be on Limbo Island since we know now that it is not MS or MS related. I float in the Ether of the Earth as an unknown and undiagnosed cause unknown.

Thank you all for standing by me during this trying time. I will come back and give you updates as I received them.

Peace be with you all.

I hope you find answers and soon. This has to be absolutely frustrating and difficult to deal with both on a personal and family level. Please call any time you need to talk. You know how to reach me.
Blessingsm my friend.

Darn Craig, that sucks gravel. I hope you get answers, eventially, too, and I sure hope it isn't ALS. If what I know about ALS is true, it's a muscle disease, rather than a nerve disease.

I've been wanting to ask you. Does the disease you have cause demyelinization? That should have shown up in one test or another....even a urine test.

Take care, Craig,

Yep --Sally's right - that does suck gravel Craig. To me it almost sounds like a guessing game anyway. Just a process of elimination-- and now you can eliminate MS. At least it narrows it down a little but I can imagine how frustrating it is.

I was dx with epilipesy and Gipson-Barr before they finally decided on MS. And now my new neuro has a whole different idea on MS....he disagrees with most of what my frist neuro said (I do too) but it just makes ya feel so guarded about everyting any of them say.

Good luck to you -- I hope whatever it is -- it is treatable and you get on with you life. Gail

PS -- were you on the MSworld board-- your name and picture look familiar.

I don't think they think I have ALS but something that might be in the ALS family of diseases. That's why they are going to send me to Duke University in NC for follow up evaluation. I don't expect that to happen until early next year though.

Yes, I frequent many of the MS forums. It's almost like a ministry for me to help others and answer questions as best I can based on my six years of dealing with a chronic disease and my own research. And I do use the same pic as an avatar. Thanks for asking.

Respectfully, Craig, you didn't answer my question. Maybe you missed it, so I'll ask it again.

Did any of your tests show de-myelinization??

Thanks,

Hi Sally,

Yes, I missed your question, sorry about that. The only test I know of that showed possible de-myelination was an elevated de-myelinting protien in my LP back in 2000. I don't know of any other tests that would show that although I've had a boatload of blood work done, I'm not sure if that would show anything.

Thanks for reminding me Sally.

Sally -- What test would show Demylentation? An MRI via the leisions??

My new neuro was discusted with the old neruo because the old one said that my VEP results showed damage to the optic nerve but not of the demylentating type. New Nuero said there is no way through the VEP to tell what 'type" of damage it is.

New neuro also said I have about 15 leisions and that my brain in shrinking-- old neuro only counted 3! Evidentally pretty soon I'll be called Clueless in California. (course most of the nation thinks we're all clueless in California but thats another story)

I am, of course confused but also angry. Getting tired of the game of it all. Gonna take my LDN, drink my blueberry/pomagranate juice and play video mind games. Gail

I'm not sure, but I have heard that LPs can show demyelinization and Pieces of myelin can actually show up in a urine test.

The reason I asked craig, is, that if he knows he's demyelinating then he and his Docs should know that Craig, either has MS or one of the other demyelinating diseases.

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.