[ras1256]

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!!

[AnnieB3]

Becky, That is absolutely great news. And it's a good thing that you are your own advocate and won't take "no" for an answer. I never do either - trust the instincts every single time.

I am like that as well. I don't necessarily run high fevers. My white blood cell count doesn't go way up, not even with clostridium difficile. HOWEVER, my erythrocyte sedimentation rate does. So when they suspect I have an infection, they always run that. Maybe your docs could check that out.

Annie

[ras1256]

Annie,
I have always felt that it was too strange for one person to have 2 different afflictions that can't be diagnosed (that thing when I was 18 was dx'd as "fever of undiagnosed origin") and not have it be connected. The sx's at that time don't coincide with my sx's since - my white cell count isn't so wacked out anymore, they're elevated but only enough to indicate a cold or something.

I haven't run a high fever that I can recall since that episode 34 years ago. For a long time I thought it had somehow given me some super immunity (wrong!), because I had had various illness that caused high fever in me before and nothing fever wise after.

I will mention the erythrocyte sed rate test to the neuro if she objects too much to the lack of fever.

Thanks.

Becky

[watsonsh]

Hey Becky,

I am so glad that you can continue the anti-viral.

And guess what my blood tests also came back as really high HSV-1. MY vzv was also high but the infectious disease doc feels it is more likley HSV-1 since it was in multiple places. And I two was negative for HSV-2.

Hard to believe that this common virus atleast for me is behind most of all my problems and flares the last couple of years to the point where it has become systemic in my system. I alo have an additional autoimmune issue of thyroid disease. I have tested negative for all the other autoimmune diseases.

I too get the heat in my head. The neuro explained its in the cranial nerves and often lives there or in C2 and C3. My neuro and some stuff that I read says that the HSV-1 virus live in the ganglion of the cranial and spinal nerves and starts essentially as ganglioitis or polyganglioitis when multiple cranial nerves are involved. Tell that to the neuro that would not listen to you about the virus and polyganglionitis. And polyganglionitis is both an inflammatory disease process as well as a virally induced immune complex. Inflammatory...that explains why it feels like those cranial nerves heat up. Especially after a shower for me or laying on or putting pressure on them.

I have been reading that HSV-1 infections can be caused by fever, trauma, emotional stress, sunlight, menstruation and ovulation.

I have been reading that the when its in the cranial nerves it can include many sensory nerve symptoms as wel as motor paralysis which I experienced.

Another thing I read which may pertain to you is that there can be an accompanying skin rash called eczema herpeticum which has an underlying dermatitis to it.

Anyway I am glad that you have found some help and relief and that the doc is willing to keep you on the antivirals. I also went down hill when I went from the high dose to a maintainence dose. For me 1 gram (1000mg) a day is what seems to work for me.

In terms of the white count my was actually on the low side and it was explained that a virus can keep your white count low.

Anyway I am learning more and more everyday and hope to get back to a more functioning state with my antiviral treatment. Maybe we also need to start posting in the Lyme/Shingles/HSV forum because it looks like we are both lucky and maybe pioneers for that forum and can help others.

Many

[maryec]

Becky great news, & something to consider ! I am in the group of overlapers, & I am seeing my Neuro again next week. I think we will have a discussion about this!
I learn something new daily on this site !
Mary

[ras1256]

I guess I can go public with my source now, huh?

That heat in the head thing is so strange and scary, don't you think?

I didn't realize that there was a forum for this. I guess we should post this. I, too, am amazed that this common virus is behind my 14+ years of struggle. And that NO ONE looked at that - until you planted the seed in my mind - THANK YOU SO MUCH! I still want you to PM your address to me so I can send you a big bouquet of flowers!

LOTS AND LOTS OF HUGS TO YOU.

Becky

Originally Posted by Shelley

Hey Becky,

I am so glad that you can continue the anti-viral.

And guess what my blood tests also came back as really high HSV-1. MY vzv was also high but the infectious disease doc feels it is more likley HSV-1 since it was in multiple places. And I two was negative for HSV-2.

Hard to believe that this common virus atleast for me is behind most of all my problems and flares the last couple of years to the point where it has become systemic in my system. I alo have an additional autoimmune issue of thyroid disease. I have tested negative for all the other autoimmune diseases.

I too get the heat in my head. The neuro explained its in the cranial nerves and often lives there or in C2 and C3. My neuro and some stuff that I read says that the HSV-1 virus live in the ganglion of the cranial and spinal nerves and starts essentially as ganglioitis or polyganglioitis when multiple cranial nerves are involved. Tell that to the neuro that would not listen to you about the virus and polyganglionitis. And polyganglionitis is both an inflammatory disease process as well as a virally induced immune complex. Inflammatory...that explains why it feels like those cranial nerves heat up. Especially after a shower for me or laying on or putting pressure on them.

I have been reading that HSV-1 infections can be caused by fever, trauma, emotional stress, sunlight, menstruation and ovulation.

I have been reading that the when its in the cranial nerves it can include many sensory nerve symptoms as wel as motor paralysis which I experienced.

Another thing I read which may pertain to you is that there can be an accompanying skin rash called eczema herpeticum which has an underlying dermatitis to it.

Anyway I am glad that you have found some help and relief and that the doc is willing to keep you on the antivirals. I also went down hill when I went from the high dose to a maintainence dose. For me 1 gram (1000mg) a day is what seems to work for me.

In terms of the white count my was actually on the low side and it was explained that a virus can keep your white count low.

Anyway I am learning more and more everyday and hope to get back to a more functioning state with my antiviral treatment. Maybe we also need to start posting in the Lyme/Shingles/HSV forum because it looks like we are both lucky and maybe pioneers for that forum and can help others.

Many

[Scots Kat]

Hi Becky,
Thanks for posting this. I'm curious about one thing (feel free to PM me). Where was your shingle-like rash? I've had a rash under my nose since Oct this year. It has come and gone in intensity, but is always there and recently think it has started to spread to a couple of spots below my mouth and near my eyes. It is a bit itchy at times but otherwise just annoying. I've been to my GP about it twice and tried several creams and soaps to treat it. It's a very minor thing considering everything else but i really would love for it to be cleared up.
Any input you have (or anyone else) would be appreciated.

Thanks again!
~Kathy

[ras1256]

Hi Kathy,
How's Scotland? I'm about 1/2 German and 1/2 Scottish and always hope to be able to go to Scotland sometime. If I ever make it, I'll let you know and maybe we can get together!

My rash started on my back, then my tummy just under the bra line, then the inside of my thigh, then just started getting single bumps of it dispursed all over including my chin and nose. The bumps are red, develope fairly quickly, full of fluid and eventually scab over. Mine itch terribly at times. If you have a rash that won't go away, I really think you should get it cultured if you haven't gotten a definite diagnosis on it. There are the blood tests, but smetimes they can be interpreted as your having had cold sores or shingles in the past - they're not always indicative of a current infection.

Are you on steriods now? What kind of creams have you been using on your rash?
Steroids should take care of eczema or psoriasis. That's why we were pretty sure that the former dx's I had gotten were not correct for my rash.

Talk to you soon!

Becky

[mrsD]

When I had my herpes titres done, I was very low (insignificant) with Herpes I and II and very very high in Zoster.

My doctor said she sees very high Herpes I and II in most people who are asymptomatic. She thought I was a total fluke!
But you know I've never had a cold sore, and no one in our family did either. But I had enough Zoster for several people!

[Scots Kat]

Hi Becky,
Thanks for the reply. Scotland is excellent! We've had beautiful weather all week - but it has been a little chilly. Our MG annual conference is this weekend so I'm looking forward to meeting some new folks with MG. I'll post some info on Sunday about how the conference went.

I am on steroids now (40mg every second day) I've been taking the steroids for a year and a half (was orginally taking 60mg daily). I also take azathioprine (150 mg daily). I've never had a cold sore, or any skin complaints to speak of (other than normal teenage acne). My dad has psoriasis. Not sure if this could be related but i recently had a smear and was found positive for HPV. The doctor thought it was probably because of my azathioprine (I freaked out a bit since I've been with the same partner for 12 years and couldn't figure out how this just happened). The doctor said most people carry the virus but never present the symptoms but appeared because my immune system was repressed.

Anyways, creams I've used: a clear gel for rosacea called Rose-X and a cream called daktacort. I've tried ozonol too and I've also used tar soap, and clinique cleanser. I'm really psycho about hygiene (a bit OCD really) and change my towels and face clothes daily. I have to wait until the 27th to see my doctor (I'm away on yet another school trip next week) but will ask for a culture then.

Thanks for your help!
~Kathy