If feel I owe everyone more details about this virus. I hope this can be the answer for some of you - I wish it could be for everyone, because it is such an easy fix!

My symptoms that are apparently connected to this virus are the ones that have caused the docs to think I had MS all these years. Problem was they could never find MS, and I was getting worse. Shelley saw a post I put on the MS forum, listing everything I could remember and sent me a PM tipping me off to the shingles virus.

I asked my neuro then if she thought we could do a trial of anti-virals, but she didn't think it worth while. I had a rash that I noticed got worse when I got worse so I went to my GP. He felt the rash to be viral and put me on Acyclovir for 7 days.

By the fourth day, I had almost total relief of symptoms. By the 9th day (2 days off the meds) I started to decline again. I made an appt. which happend to be a full week after I finished the meds and by then I was not AS BAD as before the meds, but definetly struggling again. He was convinced enough to put me back on the meds and within 2 days I was able to return to work part time. I worked a full 8 hours today, even after the flu with the help of Mestinon, and still am awake and able to see and type!

One symptom that I had always considered just to be part of my bad back was a severe pain in my mid back - right in the spine. It would hit if I was upright for very long, eventually if my head and back weren't both supported for longer than 10 minutes or so. That is GONE now.

Other symptoms I had that have resolved with the anti-viral meds are:
My head would heat up, sometimes down my spine as well. It would actually radiate the heat to where you could feel it with your hand, but the rest of my body would remain a normal temp. Then I'd start sweating profusely for a few minutes and would cool down again. I originally just had night sweats, but it started happening during the day too.

My balance was off. Worse in the dark, but always off if I wasn't looking directly at where I was going.

I had lack of vibration sensation in my feet, and one knee. This was new with this bout.

Frequent urination and/or incontinence.

Bowell dysfunction - I couldn't go without wiggling around on the toilet, and even then not completely.

Eye pain - especially when looking at something close, like when lighting my cigarette, but sometimes just in general. It got to where bright light made them hurt.

Vision problems - my eyes would just go out of focus after 5 minutes of looking at something like my computer screen - not the double vision like MG, just fatigued and difficulty focusing.

Weakness and fatigue - yes, same as MG, only sometimes when I feel like I'll be weak I don't always test weak - so maybe it's more a dysfunction.
Again, it's different than what I experience when it's MG. This has a feeling with it, so I know before I try something that it's gonna be difficult. There's a tingly-need-to-stretch type feeling that's there. With my MG, I feel nothing in the muscle until I try to use it and it just won't work. Of course with crisis, I just feel WEAK; to much to even try to move.

The fatigue is often sudden and overwhelming! I could go from alert to so tired in a heartbeat, with almost no physical effort before hand.

I had been experiencing tingling in my feet, hands and even my genitals. Eventually the tingling started in my head as well. Now part of this could've been due to my vitamin D deficiency, but it didn't all resolve until that 4th day of the anti virals.

I was intermittently hyperreflexive at my knees. It would come and go, but that is why they started doing MRI's and myelograms on me before all this hit. That indicates spinal cord involvement, so the thought was I had another disk in my neck causing problems.

I had what felt like a tight band around the front of my lower abdomen - this is new this bout. I didn't even think of it as a symptom, more that I had gained to much weight and the fat was bunching up. But then the band ended up in my upper back one day too.

At times, my legs just didn't want to move forward. They weren't wobbly like they get with my MG weakness, they just didn't want to move. I could keep going as long as I could pull my self along by my arms on walls or something, but left to walk with nothing to pull me along they would just stop after a few steps, like they just kind of locked up.

My GP was skeptical that first day when he prescribed the meds for the rash and I mentioned the viral possibility. To do this to you, you have to have an autoimmune problem because apparently otherwise the virus can't cross the blood brain barrier into the central nervous system. But he also said that he would expect me to be more sick with that type of problem.
I believe he was referring to fever, flu like symptoms, etc. When we went back for my recheck, I told him that when I was 18 I had an illness that was never dx'd. I was discharged with a dx of "fever of undiagnosed origin". My symptoms then were VERY high fever, migratory joint pain, back (spine again) pain, weirdo lumps, bumps and hives that would appear and disappear before your eyes!

My cell counts were wacked - 3x white cells, almost no red cells being made. Food was repulsive if there was ANY grease to it at all - it would make me nauseous. I was in the hospital for 16 days before my fever finally broke - was sick for at least 2 weeks before. I had specialists, but no neuro and no spinal tap was done. One of my neuro surgeons told me about 5 years ago that it sounded like that was possibly meningitis. Those are the symptoms my GP would be expecting. I explained that I have not run a high fever since that illness - just low grade temps or minor fevers. He feels that my head heat problem is a fever trying to get going, but my bodies thermostat is all screwed up now.

I broke the news to my neuro today, through her assistant, that with the anti viral my problems had resolved and I felt I just need to get my strength back. I hope to hear from her the 26th, because I really don't want to do the appointment on the 27th with the MDA people if I don't have to. I do still plan to have the MRI done, because if this is "Recurring Parainfectious Transverse Myelitis" the inflammation will show on an MRI, differently than the lesions from MS.

TM is caused by a herpes virus - either HSV-1 (cold sores), HSV-2 (genital herpes - not mine!), or Varicella Zoster (shingles) going to the central nervous system. My blood work showed me high on the antibodies for the HSV-1, which is the most common virus found in TM. TM can be a one shot deal, or sometimes can be a recurring course in which case the patient has to be maintained on the antivirals for good. I suspect my first shot was when I was 18 and unfortunately, wasn't caught and treated so now I'm recurring. We'll see what my neuro has to say about all this, but it seems pretty solid with my reaction to the meds.

TM has symptoms almost identical to MS, and the diseases they suggest be ruled out first are MS, Lupus, RA, syphillis, Lyme disease. I have been tested for all of these not only with the fever at 18 years old, but with each of the 3 bouts since - always negative. The advise on (I hope I remember this right) the Mayo site is that when there is long standing symptoms and these others have been ruled out, TM should always be considered.

SO WHY DIDN'T ANYONE CONSIDER IT??????

I hope I can spare ANYONE else the expense, stress, lost wages, lost TIME, pain, frustration......of not having this considered for them. If you think even maybe you have a history that resembles this, please respond of PM me. I can direct you to some websites that may explain better than I can what your docs need to know.

I feel so LUCKY to have a simple anti-viral take care of so much on me. They are relatively harmless long term - much better than MS treatments - and being able to keep this under control, I should be able to keep my MG under control too.

Sorry so long! But I think it needed said.

BIG, GIANT HUGS TO ALL OF YOU. The only thing that sucks about going back to work is that I don't have enough time to spend here!

Wow Becky, thank you for sharing all of that, I am having all my blood work redone in June, by mt rheumy, & will ask for a check on that ! Before I go for my muscle biopsy. Do you know if that could cause Neuropathy & myopathy damage to show up on EMG?
I can only hope you say yes !
Mary

what wonderful news for you!!!! you must feel a huge weight off your shoulders and else where[haha] amazing what other sick people can share that drs don't agree with to start but alas you were right!!!! great news!!

I don't know yet, Mary. I'll see what I can find out on it for you though! I truely hope so for your sake! I posted some of the name wrong - it should've read post infectious transverse myelitis, not para infectious.....
I'll get back to you as soon as I can! Take care, ok?


Becky

Thanks Becky, there are so many illnesses with the same presentation, it can all make your head spin !
Mary

Thanks so much for the info Becky!!! A whole lot to digest but extremely important! Thanks for taking time to type it all out to such detail.

Hi Becky,

I've had both shingles and Lyme disease, so would that effect the results of the blood tests, if you know? Also, when I had shingles, my doctor treated it with anibiotics and pain meds. Should I have been treated with antiviral meds?
I am so happy you are feeling better! Take care.

Thanks,
Pat

Pat,
I've had shingles too, which showed with a positive titre for the varicella zoster, but the HSV-1 titres were way beyond positive, i.e. it only takes .9 to be negative, 1.1 to be positive - only .2 spread - and I was at 5.0. That much higher should indicate more than just having had the virus at some point. On the shingles I was right at the titre for positive, so that just shows that I have had shingles at some time, not necessarily active now.

Shingles being a virus, I don't know why they gave you the antibiotic unless 1) they didn't have the antiviral meds yet, 2) you had scratched them and they were infected or they were worried about infection, 3) you didn't get it diagnosed early enough for the antivirals to do much good (I believe it's 48 hrs or so from when you first get symptoms).

I don't know when they started using antiviral meds, but I had the shingles about 18 years ago. I did see the doctor the same day I started having symptoms, which was a very painful hive type rash which started just under my right breast and went around to my back stopping at the spine. It continued to get worse by the hour. I don't remember him telling me why he prescribed antibiotics. I probably thought that was the normal course of treatment. Thank you so much Becky for all the info.

Take care,
Pat

Hey Becky,

I was looking reading your posts re. your viral infection when you were 18. Have you ever looked into parvovirus B19? All of the symptoms, right down to the disappearing rashes, sound exactly like it. Even the anemia you experienced sounds like one of its complications.

Nicky