Twitching, tingling and sensations in the legs can be caused by Herpes

[beckham]

I just wanted to put this out there as it seems the medical community is slow to admit this or recognize it.  It seems the literature and information available stick to the "common" HSV2 stereotypes of painful blisters/sores/ulcers.  It seems there are many of us who never experience but do experience the nerve issues and the "benign fasciculation syndrome" where our legs twitch and tingle and our muscles ache.  The more I learn about this virus the more I learn how awful and mysterious it can be.  The medical institution also needs to understand that a negative igg test, even after many months may not detect the virus. As some have pointed out, it seems there is another type of herpes that has yet to be named....one that does not trigger traditional tests, perhaps even the Western Blot.  I've been shocked to see apparent Herpes Experts/Doctors emphatically deny that leg twitches are related to herpes.  If you listed to those affected, it clearly is.

I am 7 weeks post exposure from my wife.  We had to take her to the ER her pain was so severe as she was misdiagnosed with a kidney issue.  Like many, I was vigilant in the first few weeks, looking for the traditional sores in the traditional time frames (2-14 days or so) and felt much better after nothing appeared and igg tests came back negative.  My igg tests are still negative but about 4 weeks post exposure I noticed my right calf began to feel odd.  Since I had no idea that herpes could affect your calf muscles I never thought anything of it.  One night as I laid in bed my foot began to tingle and since my Mother has severe neuropathy in her feet I started to wonder if that was what was causing that issue.  Then it clicked.....is this herpes related?  Of course, after reading through some forums, it obviously is.  The odd feeling has now evolved into twitching in both calves and thighs and tingling in both calves and feet.  Dull aches also move about through my thighs and testicles.  It's a constant.  All day, all night, everyday.  I'm currently giving Lyrica a shot to see if it will help with the twitches.  I'm about 5 days in and no clear results yet but I understand it can take a few weeks to kick in.  It does give me headaches, which only makes me question what is actually giving me a headache.  

I'll continue to test every two weeks until I either test positive or hit the 16 week mark where I will then have the Western Blot done for one last chance at diagnosis.  If that ends up negative I'll still go about my life as if I am infected with an STD.....unless a doctor can convince me that this is something else.  I wouldn't wish this upon my anyone.

A few questions for the readers;
1.  Has anyone had these symptoms and not test positive?
2.  If you tested positive after a long period of time, how long was it before you tested positive?

Take care.

 

[Ohhey143]

I tested negative by blood test but positive when they tested the soar itself. It wasn’t until about 2 months after that I tested positive by blood test for hsv2. It could take 2 to 4 months to test positive from what I’ve seen online and heard from others. My twitches started in my left calf & butt hole and now I have twitching all over my body. I am well hydrated, take magnesium to help with muscle and nerve health, have been taking the meds my doctor gave me. The meds for hsv2 help with the outbreak but not my twitching that I believe is related to my ghsv2. I have muscle spasms all over my body and it’s so annoying. It’s as if I’m being tapped constantly. I’m going to a neurologist soon. My doctor just referred me and now I have to call Monday to make the appointment. You need to listen to your body and be your own advocate. If you have no soars right now I would live life like you have it and just test again once you reach that three month mark. Hope this helped. Keep in touch!

[beckham]

Thank you for the reply.  I've yet to have an outbreak so I've had nothing to test there but it seems like one might be coming based on others testimonials.  Yes, they say 16 weeks is sufficient time for the bodies to build up enough antibodies to register in the blood test.  The waiting is excruciating but at this point I'm sure I have something.  Unfortunately, it seems the strain or "version" that we have is not as easily treatable as the one that flares up and goes away.  Somehow we got the version that provides omnipresent reminders that your body is under attack, and in my case, that your personal life is also partially destroyed.  

Also, regarding things that are under-reported....my ears ache and sometimes it's painful to chew....and my sinuses are different, as well.  

Yes, I am planning on going to the doctor, but we are self employed and insurance is a joke.  Our individual, in-network deductible is about $7k and we've already spent $3K on the ER visit for my wife.  Future blood tests and neurologist visits will only add to that.  That's why I'm trying to find a clear path before beginning this journey of hopeful recovery.  

Please keep me posted.  I'm very interested in your outcome.  It seems like many great posters on these boards disappear when they've reached a conclusion that either relieves them enough or destroys them enough to never want to engage about it again.

Best of luck and thanks again.

[Ohhey143]

I’ll keep you posted. I too agree that they don’t have enough study’s showing these are symptoms so they kind of ignore them. I wouldn’t get tested for a few months if your health insurance is that expensive. I would try to live a healthy lifestyle for now. I know it stinks. I have the reminder every second of every day with these spasms. Even if things resolve I’ll be posting!

[beckham]

Many thanks and good luck to you!

[Ohhey143]

You as well! 

[Stupida]

Hi @beckham

I too have been testing negative and have had all these crazy symptoms. Spasms down my leg and butt, hives, all over itching, etc. My acupuncturist said I have a virus, but doctors are believing my negative blood tests. I don’t have sores to test - I did once and they visually called it herpes then tests came by negative and they called it a fissure.

I’ve tested 8 months past exposure and still negative. I’ve heard someone test positive a year out!

[beckham]

Thank you for sharing @Stupida!  Question:  have your symptoms persisted for 8 months?  Have they gotten worse, better?  Come and gone?  I think not knowing what to expect is the hardest part.

[Stupida]

@beckham

The nerve issues have stopped, but I have burning and tingling sensation on my scalp. I have diffuse hair loss now, which I know if from herpes. I have been more stressed out in my early years with zero hair loss.

I am at a year and 4 months and I feel like symptoms are constant between oral and genital. I never had acne before and now I have pimples like crazy. 

I also had severe night sweats around 8 month mark and constant headaches for a week straight. 

 

[Ohhey143]

@Stupida we’re you breaking a fever when you had the night sweats?

[beckham]

@Stupida

Oh wow...it's so mysterious and ever changing.  I've never had a fever, night sweats or sores (yet).  I'm only about 8 weeks out so I'm preparing for a positive test mentally just so I don't get my hopes up only to have them come crashing down.  So far, my symptoms have included;  leg twitching, pins/needles in feet and calves, headaches, stiff neck, pain in ears, sore neck/lymph nodes, dull aches in testicles and legs and some dizziness.  I'm no longer able to sleep without medication b/c the sensations are so strong in my legs.

[Ohhey143]

Only about 30% of people have these symptoms and it’s typically when the virus hits at that 2-20 day exposure to the virus mark. Typically night sweats are from breaking the fever and if you get them constantly you would want to be retested for hiv. 

[Stupida]

@Ohhey143 @beckham I broke out in a fever and night sweats 3 weeks from exposure. I also broke out in night sweats at 8 month mark for 2 weeks. They are gone now. I tested for every herpes virus (once) as well as HSV 1 and 2 by blood 3 times by swaband 3 times. HIV (2x at 6 and 8 months) syphillis, hep B, C, Cla, Gon, UTI, BV, Yeast, etc. all test were negative except for Herpes EBV virus (equivocal) as I had it when I was 18 and Herpes Zoster (equivocal) as I had it when I was 5.

At a 1.4 year mark, I feel good but my hair loss is what I’m depressed about.

 

[beckham]

@Stupida

Thanks again for solid feedback.  Another question for you; do you have any idea if you're contagious?  Have you had any unprotected sex, or protected for that matter, and another partner show symptoms?  It's complicated when you know something is off but you have no tests to prove it....so, how do you move forward?  Tell partners you have something that doesn't medically exist?

Another follow up question; how long did your nerve issues last?  My skin is crawling daily and it's been about 2-3 weeks.

[Stupida]

@beckham No problem, happy to help as I am in the same boat.  I know I have it and it sucks!

I do feel like I am contagious.  My lips were tingling at one point and I kissed someone on the cheek and now they are dealing with immediate hearing loss.  WTF?  There doctor said it is from a virus.  So, that is all I can think about that it is my fault.  Well I blame the medical community for not investing money into HSV 1 and 2 testing.  I read on Terri Warren's site that accuracy of HSV 1 is 70% and HSV 2 is approximately 92%.

Well, I would say I am negative and show all my test results.  People always believe the blood tests, etc. But after what I am going through I do not believe them.

My nerve issues didn't last long at all. Occasionally on long drives I had shooting pains in my right leg from butt to thigh. It went away after I walked around.  

Let's chat offline via private messages.

[LotusBud]

Hi All,

When I first started on this journey about 4 years ago, I came across something which explained the accuracy or lack thereof in the blood tests. Sorry I can't find it now. The gist of it was that since the virus hangs out mainly in the nervous system, it doesn't always get taken up in a blood sample. o,O

And this is just a quirky idea for an experiment. If you want the virus to show up more definitively, you could cultivate and feed it. Crazy, I know! Go eat lots of high arginine foods or just take the supplement. Hang out in warm moist places. Get too little sleep and find ways to stress yourself out. Those are things that would normally trigger an outbreak for me. 

The nerve pain and weirdness is usually worse than lesions to me. I've been experimenting by taking 30 minute long cool baths with epsom salts dissolved in them. I'm testing whether the cold can make the virus retreat. Also, testing if the magnesium (from the salts) which is supposed to be absorbed better thru the skin will help calm the nerves. I think I might get an effect more directed at the nerves this way, in addition to taking magnesium as a supplement.

Food for thought!

Bon chance!

[JulyP]

Hey everybody, just saw this post and I wanted to contribute with a bit of info that might help everyone who is having nerve pain. Vitamin b complex can definitely improve the situation. I had rashes, tingling, pinning and my calfs still feel a bit stiff, but the b complex make it better. I am waiting to get an inyectable solution of b complex, but meanwhile I'm taking daily tablets and it's improving. Also, be warned that nerves react to stressors and inflammation so try to sooth yourselves as best as you can! Exercise- I found -really works for me. 

If you think about it, it actually make sense nerves would be affected by a virus that inhabits the nervous system. I know it's extremely scary having the symptoms and wondering if they'll go away. In my experience they do diminish, but you need to help your body in every possible way, being vitamins, movement, meds and relaxation -including breathing exercises.

I hope this helps!     

[New2GH]

Hi everyone.  My nerves have definitely been affected down there.  It has been nine months since diagnosis and onset of my symptoms, no end in sight yet as for my symptoms.  Scary as you know what!!  I started taking 400 mg of Acyclovir daily since about a month ago to see if that helps on top of just taking lots of care of myself in all fronts, which I was already doing way before this ever happened but now have an extra reason to do so.  I'll look into the b complex.  I already take some vitamins, including a B12 tablet daily.  

[LotusBud]

 Thanks for the B- complex tip @JulyP. I'll def up my intake if/ when I'm feeling the nerve symptoms start up. I find lemon balm (I use capsules) is a good nerve tonic. 

[Jack101]

Hello everyone.  I have been reading the responses on this particular thread and I am a bit concerned.  I am a physician and most of the information presented here is speculation.  HSV1/2 can cause nerve pain, but that is a rare occurrence and rarely continuous.  Acyclovir also may have anti-inflammatory properties and taking the medication my cause relief regardless of whether a herpes virus is causing the infection.  In addition, there is also the possibility of co-infection.  Speculation about what is causing your pain is at best non-productive and at worst preventing a delay in diagnosis.  Just because individuals with herpes endorse continuous neurologic pain, does not mean herpes is the cause.     

[New2GH]

@Jack101, Is there any other STD that could cause nerve issues or nerve sensations?  

[Ms. Congeniality]

I got diagnosed about a month ago, I had an outbreak. And a couple days after the sores showed up I began having a tingling feeling on my upper thigh/buttocks area. I thought maybe it was my pants rubbing me wrong. It slowly started to go down my left leg and it was more miserable than the sores themselves were. There was tingling, twitching, muscle aches, and burning pins and needles. The only thing that could relieve the pain was massage or baths. I talked to my Dr. and she said nerve pain and herpes were related. I had never had any issues like that before I was diagnosed. Once I got started on acyclovir, it slowly faded.

[acd820]

@Ms. Congeniality I am currently experiencing the same pins and needle pain right below my left knee. I was curious to see if others with H are experiencing as I was thinking I may have developed neuropathy or fibromyalgia. I am currently on suppressive therapy taking Valtrex twice a day and I have yet to feel like this pain has subsided. Maybe in due time it will since it has slowly faded for you. Thanks for your insight. If I don't see any improvements s in a week I will go visit my GP just to make sure it isn't something else. 

[beckham]

I'm posting an update so that there is some sort of "ending" to this thread.  I am now about 3 months post exposure.  Last week I tested negative again.  The only stereotypical "lesion" I had appeared on the top of my thigh and it was small.  It went away and scabbed over and then another, smaller one popped up next to it but was so small it didn't scab over.  I figured that was my sign to get tested again as I thought that would trigger a positive.  It didn't.  The lesion appeared on a Friday and was gone by Monday and I didn't want to go to the Dr on a weekend....again.  I probably should have.  I went to the Dr. not long after that to get Valtrex since my ears continued to ache.  I've been on Valtrex for 2-3 weeks now and I'm about 95% normal.  My twitching has gone away and the tingling is mostly gone.  My right ear still pops and "gurgles" like I'm recovering from a sinus infection.  Now that the twitching is gone I can sleep some and no longer rely on sleep meds that often cause side effects.  So, after 3 months, my body is starting to return to normal.  There is hope for those of you out there that suffer serious twitching episodes.....sometimes it can go away.

[UnluckyMan]

@beckham hey man just a quick question... were you taking the Valtrex anytime before you got tested?  Or did you get tested at around 3 months and then start taking it?  Only reason i ask is because i heard that can affect your test results.  As someone who was knowingly exposed to HSV like yourself, im waiting for the day i can take that test again at 12 weeks.