tooold

I just called Mayo Clinic in Phoenix, I may be headed there soon.

I'm thinking I may have Transverse Myelitis. My primary did mention the ID Dr. may want to do a spinal tap. I'm glad you are making progress @2legit2quit @Danaaaaaasaur does your doctor know a good primary in the Las Vegas area they could recommend to me?

Does your gyn think the nerve pain will ever go away? Maybe I should go to a ob/gyn. Probably be more sympathetic to my situation than my current PCP. :)

That's all I have been doing for the last few months is reading about this on the internet. My GP is the same stating neuropathy is only from shingles and only unilateral. I have had chicken pox and i used to get severe rashes when I was a child. My folks always said it was poison ivy, but now I am starting to wonder. I'm sure the blood test will come back positive for shingles since I have had chicken pox. I also looked at pictures of shingles on the face and I really never had anything like that. This was more like little red irritating bumps above my upper lip, to the sides of my mouth, and a bit on my cheeks. So you have neuralgia bilaterally? I've been bummed most of the day, the follow-up neuro appointment for tomorrow, which I have waited a month for was postponed until next week. The receptionist would not give me a reason. I so wish I still lived in So. Cal. The quality of medical care in Vegas is nothing compared to there.

Do you have nueropathy from shingles or herpes simplex if you don't mind me asking?

The id Dr is running blood test for shingles. If so, them the derm I saw when this first presented missed it and assumed it was perioral dermatitis. Yea, yesterday I felt great, but today again with the tingling in shoulders and forearm pain. Sucks!

OK, no worries, I'll wait for her response. Thank you.

@wcsdancer2010

Hi WSCdancer2010, I appreciate your response. Should I attempt to come off the acyclovir before taking the Western Blot test? I was on the Westover blog and I saw something about coming off antivirals prior to taking an igg test. I am waiting for a number of test results from an ID Dr. I should have those by next week. If my symptoms persist for much longer with no answers I will get to an autoimmune specialist. And yes, I agree, probably time to find a new primary.

Wow, this sounds like a horrible disease. I would definitely call what I am having parathesia. Burning and laser beam pain sounds terrible. Are you able to run now or have you given that up completely? The only thing I have been able to continue doing is spin class and hiking although I appear to pay for it the next day with more severe leg weakness and intense upper body tingling. I've never really had any cold sores on my mouth and definitely nothing on my genitals, that's why I'm so confused. I'm just praying this isn't something like MS( i'll find that out on Thurs when i see this neurologist) and my symptoms will dissipate over time. I find that when I am out doing things with others it takes my mind off it and I can function like a normal human being. Again, I appreciate you taking the time to respond to me. You have been wonderful!

Hi Sil88, I appreciate your support. I am a bit older than you if '88 is your birthyear Hopefully my 45 year old body can recover and what you experienced is what I will experience. I can say the weakness and pain in my legs has gotten better, but it seems to have moved to my shoulders and arms. I'm looking forward that I can visit the gym again a few times a week and do my bikram yoga. One day at a time.

I appreciate your support. Did that gentleman ever get better?

First, it's good to hear you are making improvements, that is reassuring. When she told me she had genital herpes it really didn't phase me, plus she told me she was on suppressive therapy but it was only 400mg acyc a day. I now know that is no enough to be suppressive. I guess I am a little bitter about that. We weren't together very long and only had unprotected sex once or twice. Honestly, I'm not really thinking about dating anyone for a while until I can get this sorted out. I did have some leg pain and weakness along with the weird face rash. That is what prompted me to get the blood test. I have already called the clinic up I. Seattle regarding the Western Blot. I will probably pursue that onece I am done with these other specialist I am seeing. My primary must be totally clueless because she did not even mention seeing a rheum or endo specials. Do you know of any support groups in the Las Vegas area? I'm kind of on my own with this. I appreciate your responses.

My test were as follows: Hsv1 oral. Igg 15.5 Hsv2 genital. Igg 1.1

So right let me clarify, about 12 years ago I had an outbreak on my lips. I went to my primary at that time he took one look and told me I had oral herpes. He did not do a blood test and prescribed me valacylovir. He explained to me how common it was and I thought nothing of it. I had not had another outbreak until this recent episode some months back. I freaked out since I had been with someone who told me she was genital herpes positive and got the blood test. This as after seeing a dermatologist who told me it was only perioral dermatitis. This delayed me from getting on acyclovir as well. I believe the ID doctor is working me up for autoimmune diseases as well, so maybe I am in the same boat as you. I have also seen a neurologist and I am waiting to hear about brain MRI results. Are you still taking the anticonvulsant meds or has that calmed down?

Hi, I appreciate you quick response 2legit. That's weird you say these are the highest numbers you have seen. I have been researching this quite a bit since my blood test and I have seen posts where some tests in the 50's IGG hsv1 and high fives hsv2. In fact I have been told twice on other blogs that my hsv2 is so low and never having an outbreak this could be a false positive. This is why I M so confused as to what is going on with me. Possibly some form of fibromyalgia from a hsv1 outbreak on my face? Anyhow, I started antivirals 3+ months ago with high dosageacylovir. I then switched to valacyclovir 1 gram a day. Now I am at 400 mg acyclovir 2 x day until the infectious disease doctor I saw gets back my blood work. He is working me up for other things as well. EBV, CMV, hepatitis etc. I have been negative for HIV, syphili, etc. My primary, who thinks I am crazy, says the tingling and weakness could be side affects from the antivirals.

I recently tested positive for hsv1 and hsv2. Igg 15.5 and IGG 1.1, respectively. I was tested because I was with a woman that had HSV2. About 5 months ago I had a strange rash on my face I then developed strange weakness in my legs along with tingling in my arms and legs. I never had the rash biopsied, I only took the blood tests. I am currently taking 400mg acyclovir x2 a day. I still have this leg weakness and tingling. My question is, will this tingling ever go away? I assume this is some form of nueropathy? I also have a weird aching in my right groin that is fairly constant. Is this a part of herpes as well? My doctor says this is all in my head and it is just a process of me getting old. I am a 45. Year old male.