Hi All,
I know this will be a little repetitive for many of you, but I feel I should include the story for those that are new or didn't see it before.

As you all are probably aware, I have had a secondary condition that the neuros just INSIST has to be MS, but they have never been able to confirm it. I don't blame them, because it acts just like MS.

I got a tip from someone on the MS forum that my non-MG symptoms sounded similar to hers which they have started treating as a viral (shingles) infection of the central nervous system (CNS).

One of my other symptoms has been this rash that looks like shingles, but doesn't have the pain (I've had shingles before and that stuff hurts!) My neuro saw the rash and agreed with me that it probably wasn't eczema as my dermotologist said last summer because the steroids I am on would clear that up.

I called and asked her if she thought a trial round of anti-virals might not be worthwhile. Apparently, she didn't think so at the time.

I went to my GP about the rash and he felt it to be a viral rash and gave me a 7day round of Acyclovir (anti-viral). He truely didn't think it would help anything but the rash, because he felt I would be more sick (my husband was like "much sicker and you'd die! - How sick does he think you need to be?), but I think he was referring to fever. I've been running a very low grade fever I believe, but not running 104 for days or anything.

Well, the med not only cleared my rash almost all the way, but I could walk and talk, my energy went way up (the MG still kicked in when I got to nuts, but I was testing). Then the 7 days were over and I started to decline again 2 days later.

Today, my husband and I went back in to the GP. I told him of my hospitalization when I was 18 due to severe migratory joint pain, triple white cell counts, constant fever of 102 spiking to over 105 at night (maybe that's why I'm such a dits sometimes?) and how there was no spinal tap done then to check my CSF for anti bodies - no neuro called in at all.

I told him that not only has my fatigue been intensifying, but I get this heat in my head and sometimes down my spine almost every evening, followed by intense sweating after which my head cools. My husband has felt it, too. This doc believes the illness at 18 years old and this head heat are related, that my bodies temp guage is all screwed up and this is my way now of running a high fever.

My blood work shows the HSV-1 Virus (cold sores) very high. I really expected the shingles virus (varicella zoster) to be the culprit, but I was wrong. My doc said he doesn't care if he was wrong about what the dx would be (he also thought MS and was anxious for the MRI later this month), if this anti viral works we're staying on it!!

YIPPEEEE!!!!! I have to be the luckiest woman in the world! I feel like it. To have what everyone expected to be MS be something controllable with 1 pill a day (maintenance dose), which in turn will (hopefully) keep the MG in check is better than I could ever have hoped for.

He still wants me to have the MRI done, and looking at some websites on this condition leads me to believe that this may be one of the things the neuro was going to be checking on, but DANG! She could've put me on the anti-viral at least for a while if that's what she was up to.

Anyway, I think it was the Mayo website that clearly states that the HSV -1 or -2(genital herpes - I was negative for that by the way!) viruses are the most common cause of this condition, it can take the relapse/remit course, it does imitate MS and some people do end up being rediagnosed as MS later (I'm not too worried about that after all these years - I'm Old, remember? and it started when I was 18), the virus generally only does this if there is an existing autoimmune problem, AND ......

that website also says that in cases like mine that have defied diagnosis, this viral angle should always be explored! I believe the name for it is actually parainfectious transverse myelitis. Those of you that have had a hard time with diagnosis on things that look like polyneuropathy, MS, Lupus, RA - this may definetly be worth looking into, if you can talk someone into doing it! I would love to see others get this kind of an answer in lieu of the other alternatives! If just one of you can get this kind of answer, it would relieve my survivor's guilt (that's no joke - I honestly feel guilty because not everyone's answers are this benign - why should I be so lucky?).

If anyone wants to see my full list of symptoms, let me know and I'll put it on a PM for you. It's another really long post, so I have it saved in a word processing format to cut and paste.

Take care everyone!
Love ya all!!