First, I'm not a neurologist--so I cannot comment on any of the alternative diagnoses you mention or the treatments that have been tried. And I also cannot comment on the specific symptoms. My comments below accept the notion that you have a neuropathy, but only because of what you say (or apparently have been told); this definitely is not my area of expertise.
Second, my comments below assume the diagnosis of genital herpes is correct. If in fact you had a genital outbreak of herpes zoster (shingles), then I would assume your neurological problem is post-herpetic neuralgia (PHN). As you seem to know, PHN is a well recognized and quite common complication of that infection. However, if a culture test showed HSV, the diagnosis almost certainly is correct.
HSV indeed is neurotropic. However, the documented neuropathic effects of HSV-1 and HSV-2 are pretty much limited to recurrent symptoms that occur in association with (typically just before) herpes outbreaks, with localized numbness, tingling, etc. Some of those outbreaks can be asymptomatic, i.e. only the neuropathic symptoms occur. But either way, they usually are localized to the area where the outbreak itself will occur, although once in a while they can be more widespread--e.g., pain and tingling down the leg, even though the outbreak occurs on the labia, for example.
Whether HSV sometimes can cause more persistent neuropathic symptoms, such as what you are experiencing--that is, a syndrome comprable to PHN following shingles--really isn't known; the issue has never been studied in any systematic way. My guess is that it can and does, but is rare. For most people with your sort of problem, herpes probably is not the cause. However, most cases that come to my attention do not have the apparent direct sequence of events that you describe: the onset of symptoms while being treated for your apparently first genital herpes infection certainly suggests a possible link.
As for what to do about it, that's also outside my expertise. It would seem reasonable to try high dose suppressive therapy with valacyclovir or one of the other antiherpetic drugs. But don't get your hopes up; that doesn't help PHN due to shingles, even though that virus also is susceptible to the same drugs. You're going to have to rely on your neurologist or, if not certain s/he is on top of the problem, ask for referral for another opinion.
I think I'd look for a good massage therapist. Ask your doctor for a referral. I'm thinking it could be piriformis syndrome--the sciatic nerve runs under/through your piriformis muscle, and if it's irritated by too much tension, injury, etc., you can develop symptoms of sciatica. Deep massage can really help. And if nothing else, it will help you relax. I certainly think it's worth the effort.
Thank you, but I am confused by your second paragraph. I tested positive for genital herpes 2, isnt Herpes zoster (shingles) a different virus?? Can you have an outbreak of genital herpes ZOSTER, I thought not? I never had shingles, aside from chicken pox as a child (I read they are the same)?? I read that PNH is mainly a complication of Herpes Zoster only and that it's typically in older people (over 60) with lower Immune systems. Can you claify that for me? Thanks
With everything I read on PHN, pain was the main symptom, why is it that I have no pain? Also My nuerologist said he didnt think I had it, but like you said I should get a second opinion.
You stated that maybe I should try high doses of suppressive therapy, no Dr. thus far has mentioned that to me, I will check into that.
Thank you again for you comments, much appreciated!!!!
No, I just had the swab culture that came back HSV2. I haven't yet gotten a blood test, but probably should. Thanks for your comments on piriformis syndrome, I looked into it but dont think thats it, again I have no pain, plus I had xray and MRI's and nothing showed up.
I don't understand your confusion. I know you were diagnosed with HSV-2, and I said "...if a culture test showed HSV, the diagnosis almost certainly is correct." I was just making sure that was the test that was done and that you are sure your provider didn't somehow confuse HSV with VZV. You are correct that PHN usually is painful, but there are exceptions. And although it is more common in older people with zoster, anybody with shingles can get PHN. But I did not say you have zoster-related PHN, and I do not think you do. My point is that maybe HSV might rarely cause a similar syndrome.
You don't need an HSV-2 blood test unless there is some reason to doubt the result of your HSV culture.
As I suggested, if specific answers are available about what's going on or how to treat it, they are much more likely to come from a neurologist, definitely not from me.
I was doing some research for myself and came across this site. Don't know if this sounds like you or not, but it triggered a "hmmm" for me as I remember reading a post about somebody who had numbness. Thought I'd pass it on...
I'm a 32 year old female that knows exactly what your are going through. A couple years ago I tested positive for genital herpes and after the initial outbreak I started experiencing burning and itching in my butt, vagina, and down my left leg. This has also turned into a severe stabbing pain that has lasted for over 5 years. I am currently on Valtrex and Lyrica. I have been to DOZENS of doctors, neurolgogists, pain specialits and I have been completely humiliated b/c they thinks it's all in my head. Finally my gynocologist told me I have Post Herpetic Neuralgia. Trust me - after reading your post you have POST HERPETIC NEURALGIA. Most doctors are not aware that you can get this from Herpes Simplex but you ABSOLUTELY CAN. Even though it is rare it is definately real and I think more people have this horrible problem but don't talk about it. I have tried acupuncture, herbal therapy, massage, biofeedback, Neurontin but the pain is relentless. From what you said you are not in pain and you should feel optomistic about that. Same as you, sex is not a good experience anymore. I would love to talk more about this with you b/c it is rare to find someone in the same situation. Does the Lyrica work for you? I have been on it for a couple months but dont really see an improvement. The best thing for me is a hot bath, and loose clothes. Stress defininately makes my neuralgia worse. I hope to hear from you soon.
I do not let scientifically unsuppored opinions to stand unchallenged on this forum. If you were my patient, as your doctor I would agree that PHN due to HSV-2 might explain your symptoms. But I really would not know, and neither you nor your ObG have any basis to be so certain. 20-25% of the population has HSV-2. I don't know how many people have unexplained sacral (lower body) neuropathies, but let's guess it's around a million persons. If so, there are at least 200,000 who have both problems--with no evidence that the one problem is causing the other, i.e. just random association. I don't know the actual numbers, but you get the idea.
In order to know that herpes might be the cause, a research study could test persons with and without PHN-like symptoms for HSV-2. If the proportion with HSV-2 was higher in the PHN group than those without such symptoms, it would support the association. (That kind of research would not prove causality, but it would be a start.) Such research has not been done, and for a variety of reasons is unlikely in the foreseeable future.
HSV-2 indeed may cause PHN, as I told tammi66 above. But we just don't know, and even very reliable stories like yours do not prove the case. Don't get me wrong: I am not accusuing you of not having symptoms or of somehow being unreliable. If you were my patient, I would do everything I could reasonably do to control your symptoms and otherwise help you with the problem.
No ongoing discussion, please. I don't normally comment even this much on older threads.
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