Tingling in arms and legs.

[tooold]

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.

[2Legit2Quit]

Well usually values can't say how long you've had it, but that is the highest number I've seen on these threads and other forums and I'd kinda wonder if you had it a lot longer than that.

 

Tingling is paresthesia, not neuropathy. Neuropathy hurts. . Burning sensation.

 

I get the aching occasionally in my groin too and I'm a female. How long have you been on meds?

[tooold]

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.

[2Legit2Quit]

You say it is at 15.5, well 1.10 is a positive, which is why I find that high. HSV 1 w those high numbers, is likely because they've had it sense childhood, but yours certainly wouldn't be that high, had you tested just a few months after exposure. Takes 4 months for antibodies to rise to detectable level's. Those w anything under a 3.5 and are asymptomatic, should have another test done, preferably the western blot. So if it takes people 4 months to hit 1.10, that should provide some insight, but again, these tests are not meant to tell you how long.

 

W that said since you say your asymptomatic, why wouldn't it be plausible you had it longer then w an antibody count of 15.5? I'm just used to seeing newbies, meaning 4 months to a yr's values and no, I haven't seen it that high personally, but I digress. Dancer has been dealing w this longer, so she could provide some insight I'm sure.

 

Going back and reading, it's hard to tell which values were assinged to which simplex w the way you typed it. Can you clarify please? If it's HSV 2 that is 1.1, then yes that is low and would be questionable w no symptoms. How soon after exposure did you get tested?

 

I had severe neuropathy w my primary OB and they thought the same thing of me. They said that only happened w shingles, yet there I was, feeling like a burn victim from the waist down and had to get in anticonvulsants for the nerve pain.

 

I have multiple autoimmune diseases, so my body has not handled H well, as others have the same issues and strange symptoms who do have them or think they may..

 

Sorry if I have your results mixed up.

[tooold]

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?

[tooold]

My test were as follows:

Hsv1 oral. Igg 15.5

Hsv2 genital. Igg 1.1

[2Legit2Quit]

You should see a rheumatologist or an endocrinologist to test for autoimmune diseases, not an ID doctor.

 

No, I only took anticonvulsants for about 3-4 months.. Only took that long, cause I had to ween off. I do have almost constant tenderness either on my tail bone, butt Bone's or back of thighs. A good day, is just the tailbone and it is uncomfortable to sit on hard surfaces, especially w no back support. It took a long time for things to calm down for me and I'm at 1yr and almost 3 months. I'd say for the paresthesia to stop being constant, about 8 months. Now I don't feel it much, but I know I have sensations still, more than the average person w genital herpes.

 

So you were totally OK w her having HSV 2 when she disclosed? In the event it turns out you don't have it, would you date someone again w it? Just asking out of curiosity .

 

I would definitely take the western blot to be on the safe side. How long from the time of last sexual contact w her, to the time you tested?

 

So you've experienced no symptoms on your genitals at all? No leg pain, buttock pain, tingling, burning, etc?

[tooold]

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.

[2Legit2Quit]

No, I don't but Dancer would know. There's a link somewhere on here for meetup groups based on location. I think that per dosage is normal for suppression, they tend to give it three times a day for obs. I met a guy that was having a lot of issues and found him an ID and the ID said it was the HSV 1 causing it. He was having leg weakness, dizziness and vertigo and fatigue. When I go off the meds, it trigger chronic fatigue syndrome in me, so I have to stay on them. We're always here for support and you can always feel free to pm me.

[tooold]

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

[Sil88]

Hi nevertooold, since my diagnosis over a year ago, I had aches for a while around ny armpits and neck which are presumably the lymph nodes getting busy fighting infection. I could relate this to your groin ache. Also I had a period where I'd get pins and needles every day, in my hands feet legs arms, sometimes waking me up from sleep. Maybe it's not termed neuropathy, but it's probably along the same lines.. irritation of some nerves. I considered fibromyalgia too, as well as anxiety, hyperthyroidism and post viral syndrome (ME). For all the tests I went through, I didn't get any answers but I'm mostly fine now anyway. Hope it helps to know you're not the only one!

[tooold]

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.

[2Legit2Quit]

The term @sil88 is paresthesia.... Neuropathy is burning..

 

I lost touch w him, but he had to go the hospital twice and they put him at like 3grams of valtrex a day, which was helping him get better. It was absolutely giving him fubro like symptoms and he does have eczema or psoriasis as well, which is an autoimmune disease. I really believe that H can cause strange symptoms w those of us w autoimmune issues.

 

My HSV 1 orally has never cauzed me problems. My first OB was internal in my mouth and I don't get cold sores like other people, but getting HSV 2 was difficult for me. I had a couple months ago, tenderness in my arm pits, which was new for me, but I knew it was from HSV 2. I even a yr ago running a couple times, got severe burning coming from my back, like a straight laser beam to my nipples. It hurt so bad, I coukd barely breathe. When I stopped running, it went away shortly there after. I too, feel this was caused by HSV 2. I got this at 33 and am now 34, if that makes you feel any better. :-)

[tooold]

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!

[2Legit2Quit]

Aahh.. Nahhh... It's not a horrible disease, I'm just an anomaly and the exception, not the rule. They also think I may have the beginning stages of Cushing's or pseudo-cushings, from long term depression and anxiety. Over production of cortisol will also make symptoms more prevalent.

 

I stopped running after that, but because I hurt my neck and then when I did a mud obstacle run, I didn't have it happen again. My neck has been causing me a lot of issues, so it's limited working out lately and then I got out if the habit, got in a rut and need to find that mojo again..lol. It's not stopped me from working out, so no worries.

 

Don't think MS causes upper body symptoms like you're referring to, but rather below waist. I coukd be wrong, but it may be something else. There are other autoimmune diseases like Sjogrens secondary disease, associated w a primary auto, that can cause that and so can Lupus. .

So you already had tests done for MS and are going for your results? Well good luck and I hope all goes well... I don't feel like that's what it is though.

 

Np, anytime!

[WCSDancer2010]

@tooold

 

Sorry I'm late to this ... keep getting buried with other things in life...

 

I'd get the Western Blot test done for the HSV2 result - 1.1 is VERY low and with no genital OB symptoms, I'd question the results....

 

Western Blot - Westover Heights Clinic,http://westoverheights.com/ (503) 226-6678 ... she can order the test for you through Quest Labs. It costs $5/minute for a consult … cheap IMO for clarity and/or peace of mind.

 

For the other symptoms I'd get to an Autoimmune Dr or an ID Dr - could be a LOT of other things ... and I doubt very highly that it's Herpes ... your HSV1 is well established and your H2 is very questionable. If your Dr is treating you like you are nuts, it's time to get a new Dr .... sounds like he doesn't know much accurate info about HSV anyway if he told you you were positive with a 1.1 result with no symptoms ... so I'd start looking towards other experts to see if they can help you get answers.

 

 

 

[tooold]

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.

[tooold]

@wcsdancer2010

[2Legit2Quit]

She gets really busy, don't worry. She will come back around. On week night's, she usually will respond later at night. She responds as quickly as possible w her hectic schedule.

[tooold]

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

[Danaaaaaasaur]

Have you been tested for shingles? A lady at my mums work who is pretty much the same age as you had shingles on her face which presented as a rash. I myself have neuralgia so I get the tingles and the burning/ pain. So I definitely know how sucky it is!! :)

[tooold]

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!

[tooold]

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

[2Legit2Quit]

My neuropathy was from herpes. My GP and rheumatologist stated shingles only does that, but that's not true. I have found others who have had it and if you Google neuropathy from HSV, you will find it as well. Doctors are so ignorant. Plus shingles rash and neuropathy only takes place on one side of the body, not both sides. . you're kinda young for shingles, I'm surprised he's even suggesting that, unless the rash and tingling and pain is only on one side for you. Have you ever had chicken pox before?

[tooold]

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.