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Penile pain, burning and itching genitals
I am a 28 year old male. The symptoms I am about to describe began suddenly around August 2005. At first they were chronic; lasting all the time for about 2 weeks, after which I would be symptom free for a month or so. Gradually over time, the period in which I sufferred the symptoms lengthened and the period for which I was symptom free shortnened, to the point where I would say for the last 9 months I have sufferred these symptoms 24 hours a day, 7 days a week.

My groin area constantly feels "clammy" and sticky, much like you might feel after a long run. My genitals are constantly itchy in various places on my penis, testicles and pubic area. When I sit down, I experience a burning / prickling feeling in my groin, buttocks and thighs. The feeling is constant but is not generally felt when standing up or lying down. Minimal alleviation from the burning feeling is gained if I sit on a donut shaped cushion, but it does not help much. I also experience sharp stabbing pains in my penis from time to time, which was in fact the very first symptom I felt when this all started happening.

More recently now I do not seem to have the same pressure when urinating and I can't seem to squeeze everything out like I used to. No matter how much I shake afterwards, a little more urine always seems to drip into my pants afterwards.

I saw a urologist very early on in the picture; he performed a cystoscopy and prostatic massage which did not show any abnormal results, however it was likely that when he performed this it was in between times where I was sufferring symptoms. I also took a couple of courses of Ciprofloxacin which did not help at all. I have also been checked, re-checked and cleared on any STDs. I should also mention that there are no visual symptoms; sores or rash etc.

I have seen a neurologist who has tested me to the limits of his field of expertise, including MRI, nerve conduction studies, a lumbar puncture and various blood tests. He was unable to find a neurological reason for my symptoms.

I am now going to seek a second opinion from a urologist given the progression of my symptoms over time. In the mean time, if anyone can relate to these symptoms and offer some kind of advice or guidance that would be much appreciated. I am sufferring from this 24 hours a day 7 days a week and it is destroying my quality of life. The most frustrating thing is that as yet no one has been able to give me a definitive diagnosis of what this is.

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Hey JJ310, I never found out through testing but I am 99% sure it is a fungal infection. Do not listen to doctors if you think it is a fungal infection. For whatever reason they pretend it doesn't happen unless you are immunocompromised. I don't know if it's because all the antibiotics they prescribe cause some of the infections or because it's not in their literature, but they will tell you it does not happen to healthy people and they are wrong. I spent a lot of money and was treated like I was an idiot by most of them. All I can say is if you think it is some type of fungus, stay on the diet, try Threelac or anything antifungal and see if it works for you. You could try getting Diflucan or something similar from a doctor but I wouldn't put a lot of stock in anything they have to say. I saw about ten doctors and only 2 of them said it could be a fungal infection and only one prescribed me Diflucan. I am 90% better after three years and feel like I am very close to being 100%.
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i too have a similar symptoms, very itchy and becomes painful if i masturbate  . I am am virgin. I know how it started when I was in boarding school, we used to use common bathrooms , I used to touch my penis(foreskin out) to walls for fun. suddenly one day i got it.  It was in a third world country, the doctors are useless. So i have to suffer with this for years. I had rashes when i initially got it but local doctor gave me clotriomozole this gave me some comfort, over the years the rashes went away, but the itch and pain are still there. Finally i ended up in US. I showed it to a dermatologist. He said it's an inflammation and gave me desodine. This made my life worse started getting pelvic, abdomen and back pain. So I decided to go to big hospital, they said these pain and penis abrasion are unrelated and started treating me. Ran through all the tests and found nothing. As usual my final stop is neurologist whom I may be seeing in while.  My urologist says he doesn't know what I have and my dermatologist gives me anti depressant medicine. I am not sure If am not expressing them correctly or I got the weird thing in the world. I am going change my primary care physician and going to beg new one believe my story and try to treat me in that lines.   This is one of the top hospitals/universities in the world. So I am losing the hope slowly and may have to live virgin for rest of my life or sometimes i feel there is no point in continuing. worst part of this whole thing is u have act normal as u can't say and no one understands what r u going through.
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In relation to original comment posted by confused and fairly similar to everyone else. Since the start of the year I've had a very heavy sensation of the testicles and the scrotal skin does not stop moving. You can see the movement of the skin,  looks like worms are wriggling over my testicles, not cool. Can also feel like a wave of tingling come over the testes and a lot of discomfort in the perenium. Especially when I'm sitting it feels like my testes are becoming bruised and I can only sit for short intervals. Can never get entirely comfortable either in boxers or underwear. Have a prickly, clammy sensation on the scrotum and down the legs where the scrotum rubs again, a generally uncomfortable irritable feeling. Feels the best when I wake up but then the movements start soon after. I've been to ample amount of doctors and specialists who all are unable to give me a diagnosis. Very frustrating and uncomfortable. I showed the movement to 2 different urologists who both mentioned the movement is the cremastric reflex muscle and dartos muscle but couldn't provide explanations. Tried antibiotics, creams, pain killers (giving Lyrica a go at the moment, not working yet, 3-4 weeks of use). Negative to infections, been treated from everything from prostate infections to nerve blocks. If anyone has had any luck with treatment or possibly an answer I would be very eager to hear back, thanks.
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Guys:

I am at the end of my rope.  After 1 1/2 years of test, MRI's antibiotics, creams, gabapentin, etc.  The genital pain will not resolve.  I have had 10 HSV test including a Western Blot.  All came back negative.  I went to the Mayo Clinic (they had no answer and Mayo is rip off if you ask me).

Please post in you find an answers.  I have sunburn type rashes on mu butt, constant nerve pain in my sacrum and my penis.  I also felling a burning sensation in my left foot and behind my knee.  This all started 30 days after unprotected sex.  There is no doubt that my exposure started this madness.  Please reply.  I am about to quit my job with no where to go and limited financial resources.  ThankA
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You guys all have a bad yeast infection called Candida http://www.stopyeast.com/eyeproblem.html Caused from a serious case of antibiotics that kills the good bacteria allowing the yeast/bad bacteria to overtake these areas and manifest throughout the body resulting in hyper allergies in the eyes, throat, stomach, reflux, bloating, yeast infection, consisting of an ichy anus, numb penis.. I noticed I had it after being treated for chlamidiya, I was back to normal for a day and then it went numb. I jumped online and researched. It all leads back to this. People have it for 10 years before they cure sometimes. Mine has been off and on for the past 8 years since in hospital on serious antibiotics. I always thought I had an std, then it would go away.. depending on my diet. Its tough to get rid of but there is some good medicine online that can cure you. A naturopath is your best bet though. They know all about it and you can be back to normal in a few weeks. hope taht helps.
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see below
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I can't believe this thread is still going, I reviewed it one and half years ago when my symptoms, like everyones here, first started. Been through the run around of doctors in all related specialties, took antibiotics, antivirals, std tests out the wazu, MRI and diagnostic testing... Nothing seem to help except time thankfully mine has been getting better but very slowly. Finally started on cymbalta and gabapentin for neuropathic pain along with pelvic physical therapy from specialized PT this finally lowered my symptoms by 70%. Since I have been continuing his treatment but haven't gotten significantly better, I did take a month of antibiotic from urologist cipro or similiarities and most symptoms disappeared but returned shortly after, this also. Happened when I took similiar treatment on long term antivirals at high doses.

A answer to this may be that antivirals and antibiotics have anti inflammatory properties which eleveate the symptoms rather than thinking I have a bacteria and viral infection at the same time, Atleast I hope not.

I may try a homeopath and see if that helps, I am seeing a pelvic pain specialist doctor recently bu hey as well don't know the cause of the pain. Mine also started after a protected encounter with sex worker, btw.

Anyone that had this and it finally went away or is more than 70% there please chime in with any options are greatly appreciated.
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Mine has slowly, ever so slowly, gone away over time.

Mine was found to be HSV1 by swab.  I've never been positive by the blood test, even out to a year, including Western blot.
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Did you have a blister type outbreak. Where was it located? Was it the only outbreak you have ever had?  I have red patches on butt never a classic blister.   any info is helpful.   Exactly how long is slowly went away?  Months years???

thanks for sharing
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I never had a blister type outbreak.  I had a rash and a lot of redness.  I fought for 11 months to figure out what it was with all doctors saying it definitely wasn't herpes.  All the medhelp docs told me nothing was suggestive of herpes as well.

At 11.5 months after exposure I had a surgery, all of a sudden about 4 tiny little red bumps developed, think size of a pinhead.  I quick ran in to the doctor to get them swabbed, they came back as HSV1.

It's been the only time I've had something physical to have someone really look at, otherwise it's just been sensitive skin and all the stuff people described in this post, to a T.

My blood tests are negative, including Western Blot.

It's coming up on two years now since exposure, around the one year mark is when it slowly started to get better.  Some days it still annoys the crap out of me though.
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Thanks.  I fear that I have exact same situation.  I have negative WB and close to 8 hsv test.  One was low hsv1 positive but since WB came back negative my ID doc says it was a false positive. I have red inflamed skin in crease of buttocks that fades from time to time (it is now like a red sunburn type rash)  It hurts to sit for long period of time. The nerve pain in penis is the killer.  I have been fighting this 19 months now

Where were your small bumps located?  Has anything helped.  I am daily acyclovir Gabapentin and amatryptyline.   I don't know if I will ever get complete relief.  Good luck and thanks for sharing
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Time is the only thing that brought relief for me. The small bumps were on my penis, but I've had red sensitive skin moving around the dermatome.
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This is my story. Had protected sex with a woman with HSV2. 9 days later started itching in the groin area and constantly self examined my penis, looking for lesions. 5 weeks later developed a burning pain in the penis, heavy feeling in my pelvis, and difficulty urinating. Have had negative HerpeSelect HSV2 tests at 8 and 11 week post exposure. The pain in the penis is horrible. Starting to believe this is all related to herpes. Again, never had any lesions suggestive of herpes. Saw an STD doc and he reassured me it was not herpes. Don't know what to believe. Maybe I should just concede and accept that this is herpes and start antivirals.
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So I had a small bump in my pubic area (not characteristic of a herpes bump more like a pimple) I popped it and it had puss & blood in it & it immediately start going down/healing. I also have two very tiny white bumps right below the head of my penus. They are exactly the same size and side by side.  They don't hurt at all but they have been there for months. I also experience periodic minor itching & mild chronic burning in my penus that has been going on for 6 months plus. Any thoughts?
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im experiencing all the same symptoms. did the diet work?
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did this work? I currently experience this 24/7!! Thank you
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Hi good to know we not alone here I to had unprotected sex 19 months ago woke in the morning with burning feelings but cold to touch.thought it was thrush creams do help a little but comes and goes. Got a little pimple at bottom of penis 12 months doctor said herpes but 3rd test negative for type 2. Gave me a week supply of anti med didn't help and pimple went in couple days it was in a hair which I have always got occasionally so don't think it related.I still got stinging inside like wee still in there and it feels cold.the skin around my foreskin is dry and red.the hair follicles on my balls are red and raised from time to time but no rash or dishcharge.have had std tests 4 Times all good and also had female partners who never developed anything.I think it some kind of infection but any help
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8 months down the line and feeling kind of the same in a progressive way.  Started off with the penis pain head and in the shaft burning sensations around my groin and stomach pain that over time has led to thw bain bottom of my tesricles and aroind my bottom and thighs.

No rash no spots to physically see.  

Been treated for ins and now just been put on a low dose of anti depressents which they use for treating neuropathical pain - although have from reading thinga like this wont help

Been tested STDS bur nor herpies....may go see about that.

Qyestion if anyone following this - has anyone ever had any problems with passing something on to a partner in relation to this?

One stupid mistake!!
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hi, i am experiencing the same burning symptoms as you, did u ever get to the bottom of your problem, regards stevie
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I've had all these symptoms but after protective oral sex. I feel it's a mystery virus passed through saliva and it affects the skin and then, nerves. I've had itching, pain in legs like insects crawling, a feeling that from the waist down I have sunburn or the flu. Small nettle-like stings around the knees down to the feet. Back pain too and a feeling that my muscles tighten even. I don't feel this is a typical std and as I say, passed on after oral sex with protection.  Doctors and gum clinics I feel also don't know enough about it and think it was in my mind.  I've had it 3 times and each time after protected oral sex. No more sex for me if this is what happens. First time was 5 years ago and I did feel much better after a number of months - especially after being told it wasnt hiv....
Andrew
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The diet did not work completely. I keep going off of it and feeling sick again. It has been 3 1/2 years and I'm still suffering. I am definitely better than I was but still not feeling great. I am certain that it is a fungal infection but nothing gets rid of it completely, I'm starting to think there's no cure, only treatment. hopefully you have better luck.
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1926652 tn?1392027883
Is anyone who's posted on this long thread aware of a name for the condition?  I know there is the diagnosis of "post-herpetic neuralgia", but our range of symptoms seem more extensive than that and it seems to me that our pudendal nerve is clearly the cause of all this.

I have a positive HSV1 IgG antibody and I was exposed to the virus in 2008.  I have had nearly seven years of suffering from almost all of the other posters' symptoms.  I suffer from a constant penile pain, such as shooting, stabbing and burning.  I also have numbness there too.  I have sitting pain in the buttocks and recently also pain and bloating feeling in the abdomen.

Symptoms are reduced when taking Cimetidine, which has a known effect of helping the immune system, as it mediates the T-lymphocyte suppressor cells, which in turn allows T-cells to work more effectively.

Similarly taking a larger than usual 1,000mg dose of valacyclovir also has a notable effect an hour or two later, when my skin starts to feel better and pain is reduced.

I have the feeling of genital irritatability and unpleasant skin sensation when touched.  It also affects my urination, such that even after drinking a small volume, I will very soon want to urinate.  It's more a case of an over-sensitive bladder, rather than urinary retention.

In addition, I have male erectile problems, due to the nerves failing to work.  After a while they do work and then I'm fine, but it takes some effort.  If taking Cimetidine or a 1,000mg valacyclovir, this problem is reduced for a brief period.  Clearly the HSV virus is active in suppressing the nerve function.  Nevertheless I have lost the erectile impulse on arousal.

Is it the pudendal nerve that is causing all these symptoms?  Most of the above posters report the same symptoms as mine.  I have also undergone extensive CPPS prostatitis treatment as per Dr. Wise/Dr. Anderson's protocol in A Headache in the Pelvis, but it isn't that.  I have attempted to contact Dr. Wise about my problem because I feel that a number of people cite CPPS as the cause, but he does not seem to respond to people who suggest that their CPPS has a herpetic cause.  I think he is only interested in getting patients on their $3,990 treatment and training sessions.  I say this for the benefit of any sufferers who might think of trying that treatment.
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No but I'm am searching for answer as well. Thank you for posting your info
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I think the symptoms are purely HSV1.  Like you, I have HSV1 genitally.  I've had it for almost 3 years, and I've experience genital irritation and all the symptoms here for 3 years.  I'm negative by blood for up to a year out, even the Western blot.  I was "caught" by a swab, twice.

My thoughts are that it could be pudendal nerve related.  Herpes inflames the nerves, when I was first exposed I had sore back and all sort of crazy pains, nothing that was anything like the "classic symptoms" of blisters people talk about.  I never had a blister.

I honestly wouldn't be surprised if a majority of the people posting here had hsv1 genitally.  I know most have been blood tested, so was I, I think the blood tests are even worse for HSV1 than they let on.

I also feel, that for all the HSV1 and HSV2 genetically are the same arguments, I think how they act are much different.  Most people with HSV2 have frequent outbreaks, periods of normalcy between and are highly infective much of the time.

HSV1 appears to cause few outbreaks, if any, but tend to constantly irritate the nerves and cause redness, but apparently isn't contagious at those times or people have immunity.

I'm also of the belief that you can catch HSV1 again in a new location if you are unlucky.  Your body creates antibodies to HSV, but the t-cells localized in the skin seem to be what control it.  Since catching HSV1 genitally I've had HSV looking itchy bumps show up on my chest, right where I rub a towel when coming out of the shower.

I think you often see people say HSV1 isn't very contagious for a few reasons.  Most people have some form of HSV1 already, so acquiring it genitally may not be as bad as the initial outbreak some of us had.  Even then, my experience with HSV1 has been very different from a classic outbreak.  These huge differences caused many experts to tell me not a chance it's HSV, HSV doesn't behave that way.  Often times it's passed off as a yeast infection or fungus, or trauma, or even guilt.  I hate seeing that last one.
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1926652 tn?1392027883
Hi Larry, I’ve been trying to find the time to write back to you since you replied to my post.

I have been suffering for some years, have been misdiagnosed and really going around in circles.  It seems to me that HSV is not well understood by the medical profession.  There is a well-known doctor on one of the forums, called Hunter Hansfield.  I noticed that whenever someone reports symptoms similar to those in this thread and is deeply concerned that it might be HSV, his response is always to assure them that HSV does not present in this way.

I concur with many things you say in your reply, including the fact that if people carry the antibody to HSV1, they will be less likely to become infected again elsewhere.  I believe that in my case, I was exposed to HSV over the course of a year or more, by my former partner who declined to inform me of her condition.  I theorise that it may have taken me some time to generate the antibodies to it and therefore was repeatedly infected and my symptoms are unusually severe.  It has caused what my research seems to indicate, is herpes simplex radiculopathy.  Symptoms change dailly and can go from severe to mild.  I think this is an indication of just how easily susceptible nerves are.

Have you tried taking an over-the-counter medication called Cimetidine?  It reduces T-cell suppressors, thereby increasing the immune system’s fighting response.  This is an off-label use of the medication.  I take 200 mg three times per day, plus a 400 mg dose before bed.  I find that within minutes after taking them, my symptoms reduce.  They even increase nerve sensation again for a time.

Outwardly, I almost only have red skin or bumps in the skin around my groin from time to time.  I have rarely had any lesions and even when I have, they’ve been present for only a day or so and do not look like the pictures I see online.  I believe that HSV affects of health of the skin and that when inflamed, it is not simply HSV, but rather a symptom of it.

I do not like to find myself in this position in which I’m making up my own theories, sometimes ignorant, but quite frankly I have had very little help from the medical profession.  They tell me not to quote from single-case reports.  Some have said it’s out of the question that it is HSV, while others have immediately responded that it is HSV and there’s nothing that can be done about it.  And this is in the same hospital.

I have also noticed a lot of itchy bumps on my chest, as you also pointed out.  For some years I was not even aware of what was wrong and made no attempts to try to prevent auto-inoculation.  It is not certain though.  This condition can cause a lot of perhaps unnecessary concern.

For what it’s worth, I have listed my symptoms below.  I'd appreciate knowing how they compare with yours, or others.  I’ve shocked myself at having compiled this long list over the past few days, due to the extent of it.  But it is no exaggeration at all.  Those symptoms I’ve listed are shown because I have no doubt as to their cause.  They all increase and decrease in severity together.

- Direct symptoms -

Genital numbness, especially towards the end of the shaft.
Glans doesn’t engorge during erection.
Glans doesn’t respond to temperature.
Prostate and genital tightness/pulling feeling/unable to relax genitals.
Skin paraesthesia.
Pressing/knawing in glans.
Tender feeling in penis shaft and surface skin.
Skin pain on shaft and scrotum.
Erectile dysfunction, due to numbness.
Loss of sexual impulse.
Loss of penile firmness when flaccid, structurally limp.
Grey underside of glans due to lack of blood flow.
No response when contracting pelvic floor muscle.
Sticky top of glans, with unpleasant feeling to touch.
Occasional prostate fluid discharge from meatus, non-bacterial, stops when taking acyclovir/valacyclovir – thought to be neurological origin.
Absence of nocturnal erections.
Periodic pin-prick in the left hip joint.
When contracting pelvic floor muscle, causes pin-prick in hip joint (as above).
Leg weakness left and right, with shaking if raising legs while sitting.
Severe upper back ache, perhaps during viral activity.
Strong urinary urgency even after small fluid intake, almost to the point of incontinency.
Altered facial and forehead skin sensation.
Occasional pinpricks around mouth (externally).
Pimpled, sore and clammy skin in groin, especially after climax.
Stabbing/pin-prick pain in glans, especially after climax and during the following day.
Skin burning, especially after climax.
Sitting pain in buttocks, at the impact of reclining oneself.

- All of the above, while they may seem too extensive, normally present simultaneously with other symptoms, giving an indication that when symptoms are at their worse, most of the above will be likewise.  Those symptoms over which I have the slightest doubt as to their cause, I have omitted from this list. -

- Possible symptoms, with good reason to link -

Numbness in top of feet and outer edge of knees.
Loss of balance and difficulty standing to put on pants.
Weakness in lower back.

- Other observations -

Mostly had only a sore red foreskin, accompanied by paraesthesia/numbness, and no typical open lesions.
Genital underside has tiny prominent bumps (< 1 mm), always slightly painful.
Occasionally symptoms improve greatly over the course of a year or more, then suddenly symptoms all return, perhaps coincident with viral activity.
When first exposed to HSV1, had severe debilitating middle-back ache.

- Treatment -

Two x 500mg valacyclovir taken together improves most symptoms, especially loss of feeling and impulse.
Cimetidine 200 mg or 400 mg also improves most symptoms, within minutes.

The most telling observation I’ve made (and which I self-administered since it can be bought over the counter here in my country) was when I started taking valacyclovir daily and found that my severe prostate tension was almost entirely eliminated.
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It's been over 2 years from infection for me and HSV1 is hardly on my mind anymore as it is active so infrequently, but this is what I remember of symptoms.

* Weird, irritated, burning skin that seems to move around my boxer shorts area.
* Feeling like someone had taken sandpaper to my skin and rubbed it off.
* Patchy redness that appears for no reason and then disappears just as quickly.
* Tiny, and I mean very tiny, like touching a ball point pen to your skin, single red fluid filled spot or two that last for a day and then fade and disappear without changing (that's what swabbed positive)
* Very sore lower back
* lost 10 lbs in less than a week at infection (part of if was probably stress)
* Sore neck
* White tongue
* Feeling like my genitals are constantly cold and wet.
* Low-level genital irritation.
* Itchy butt.
* Occasional peeling skin after redness
* Dull cramping feeling in my inner thighs.
* Sunburned feeling on my calf. Mostly on the right side.
* Numb toes. Mostly all on the right side.

Symptoms I never had:
* Flu-like symptoms
* Blisters
* Any sort of erectile dysfunction


None of those symptoms were present before HSV1 and all came immediately after HSV1 infection.   I see correlation when you look at forums for fibromyalgia, many sufferers of something else also mention having herpes with those symptoms. I probably had more symptoms, but it's been over 2 years.

Here's an interesting article for you.

http://chronicfatigue.about.com/b/2012/09/12/is-herpes-virus-connected-to-fibromyalgia.htm
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Thanks very much for this update Larry123456, you've encouraged my ongoing daily research to take an alternative route.  Instead of focusing on nerve damage, I've been looking more at fibromyalgia.  Since you mentioned the fibromyalgia link, I have been reading about that and it matches some of my symptoms, especially extreme tiredness, muscle weakness, especially in the legs and lower back.

May I ask what caused you to suspect a link with fibromyalgia?  I think you may be on the right track, since new evidence seems to show that fibromyalgia is treatable with valacyclovir and other herpes antivirals.  I read somewhere that there is a US doctor who has found patients with high herpes viral titers, tend to have increased fibromyalgia symptoms.  This concerns me, because during the year that I was being repeatedly exposed to HSV, I believe it has increased my viral count.

Is there also a link between fibromyalgia and CPPS/prostatitis, I wonder?

I think it's worth mentioning, from 2012 onwards I was treated for CPPS (Chronic Pelvic Pain Syndrome, also known as Prostatitis and Prostatodynia) by a urologist.  He immediately jumped onto the CPPS theory, despite my HSV antibody diagnosis and a previous doctor's claim in Thailand that herpes can cause nerve damage, and he began to carry out internal trigger-point therapy inside the pelvic floor.  He stated that nerve damage from herpes was "far fetched".  His treatment worked for a few days and the relief was tremendous.  However, after a short while, the benefit was lost.  He carried on with the regular treatment but it was in vain and became a waste of money.  However, I can see that possibly what happened is that he affected the fibromyalgia symptoms by pressing the pelvic floor muscle.  His theory was that the pelvic floor muscle was contracted, knotted and with trigger-points and as a result, was stretching the penile nerves, causing various pain and even inflammation on the skin.  In the end, his theory was incorrect, as my symptoms are mediated slightly by taking herpes antivirals.

Incidentally, I have more or less all of your symptoms, plus a whole lot more too (listed in my post of 1-Mar).  But whereas you mention that your symptoms have resolved, mine have been ongoing, and in fact even getting worse over time.  I'm happy for you though, that you've seen a full recovery from it.

In case it's of use to anyone, I have been exploring the possibility of having ozone treatment from a specialist; a technique called autohemotherapy.  It involves taking small amounts of blood, infusing it with ozone and returning it to the patient.  It is said to kill viruses and bacteria, including herpes.

Another alternative is the electrotherapy technique, put forward by the late Dr. Robert Beck (see www.youtube.com/watch?v=lDriQenJYhg) which sounds very promising too.  I feel that I need to get my viral count reduced, because the pain is just unbearable and I hardly ever get a good day now.  It would be good for those who have posted on this forum in the past, to give an update on their condition.
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My proposed link to fibromyalgia was accidental and anecdotal.  One of the symptoms I had with HSV1 was that it felt like the back of my right calf was constantly sunburned.  Since I had no diagnosis yet I began to search around for what could cause it.  I kept popping up on fibromyalgia forums and about 3-4 pages in to the discussion someone would mention herpes, and a whole lot of people would reply, "I never thought to link them, but I have that too".

It's not scientific by any means, but circumstantially it holds water.  And basically what I was saying is that fibromyalgia may be a symptom of herpes for some people, one in the same, not that the two are linked.
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1926652 tn?1392027883
Thanks for the reply.  It's good that you managed to recover from your HSV1.  It sounds like it was a one-off effect from your initial exposure, whereas mine seems to have degenerated progressively over time.  The most frustrating thing for me, is not finding medical practitioners who accept that HSV can cause my symptoms.  The worst example of this has been when seeing infectious disease specialists and urologists.  They both just regard it as a skin vesicle issue and nothing more.  The urologist in Singapore told me it was "guilt", as you mentioned in your earlier post.

I actually took downloaded copies of case reports, showing Elsberg Syndrome and Herpes Radiculopathy etc. to my urologist and he replied that they are just single cases and aren't to be relied on.  It's so frustrating that they won't educate themselves beyond their medical texts.

Presumably these case reports have been published by exceptional doctors in the past who have found patients' symptoms noteworthy and prepared the information for the benefit of others.  Why, I wonder, don't we find those doctors in general practice?  Whenever I visit them and want advice on what I can do to get over this, they just want to get rid of me.

This has left me no option but to self-treat myself.  I am getting my pain and several other symptoms under control, finally.  Valacyclovir is available here over-the-counter, so apart from the huge cost, that's no problem.  However, this only resolves pain and stomach tension for a short time.  The real benefit I'm finding, is from taking the following:

1. Tagamet - anti-acic medication which improves the immune system (off label).  This has a noticeable effect minutes after taking it.
2. L-Lysine, several grams per day.  This has more or less resolved my genital numbness.
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It's been 7 months since relations with female and still trying to diagnose possible same infection.  Symptoms:
First month:
   Severe lower back pain (not like usual citric )
   Pinching pain on/in tip of foreskin
   Sharp pain in left butt/hip bone that made me limp
   Left heel bone pain that made it difficult to stand
Second month:
   Small raise hard lump on pubic area near upper edge of hair line.  Would not go away two weeks later, applied vinegar and immediately opened into a sore. (Not HPV)
   Feeling of bug bites and needle stings on scrotum Third month:
    Difficult to sit.  A lot of butt bone pain
    Random penis pains
    Feeling of burning skin/stings on groin folds
    Back pain/herl pain gone.
    Irritated inner thigh
    Tip of penis swelling and pain
    Under arm aches/pains, not painful but sudden onset
Fourth month:
     Irritated inner thigh cont
     But bone pain cont
Fifth month:  
     But bone pain subsided mid month
     Started feeling calf aches like dehydrated
     Urethra started burning(again) with mild head irritation
     No more under arm aches.
Sixth month:
     Continue with mild urethra/head discomfort
     Pain and discomforts on base of scrotum folds(very    
     noticeable) lasted all month.
     Calf ache continues
Seventh month:
      Groin fold pain/discomfort subside but occasionally
       returns
       Scrotum bites/stings/pinching returns (mild)
       Urethra and head discomfort persists.


  There has been tree Dermatologist, one urologist and three blood/urine analysis.  HSV 1 pos 2.96 LGG at fifth month but had a cold sore on lip during blood sample collection.  
   The most frustrating thing is having to wait for diagnosis by swab during the outbreak that never comes.  Had the small pimples here and there and on backside but dermos tell me it's foliclelitis.  

  at this point SHOULD I ASSUME I AM HSV1 gen Pos?
    
    
    
    
    
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I'm sorry to read your list of symptoms Serg, as they are almost identical to my own, and I know what my own suffering has been like for the past several years.  They have caused much dismay.

However, in many of the medical articles I have seen, which explain postherpetic neuralgia, it suggests that at the onset of viral symptoms, one should take the acyclovir-based drugs as soon as possible.  This, according to research, is crucial to limiting the subsequent neuralgia that happens after viral activity.

I never did this because in the early days, I had no lesions to indicate herpes activation and went for several years before finally putting all the facts together to arrive at the conclusion.  I was IgG positive after testing and then more recently found that it was specifically HSV1 (>3.5).  I confirmed by HSV condition by self-treating with valacyclovir.  I found that it reduced all of my symptoms, albeit briefly, and still continues to do so.

If it provides you with hope (and I certainly want to give you hope, rather than bad news), I have also read that in time, the postherpetic neuralgia reduces and disappears.  In my case it has not done so, but I think my case is quite extreme.  I have found that each time I suffered viral activity, subsequent nerve damage took place.  If you can take acyclovir, or better still, the pro-drug valacyclovir, whenever you think you are about to see viral activity, then I think you should be able to overcome it in time.

I have just undergone four weeks of ozone therapy by blood autohemotherapy, together with daily injection of ozone gas into the dorsal ganglia region (where herpes resides), both in order to attempt to kill off the virus.  It is too soon to say if it is working, but during my first few days' treatment, it helped an awful lot.  After the first few days, some of my pain returned.  I need to wait to see, and if necessary, continue treatment.

I wish you the best of luck.  I have accumulated dozens of medical articles and scientific studies that confirm herpes simplex does not always remain dormant and in fact continually changes the nerve sensations.  Therefore please contact me if I can be of help!
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Any update to condition post ozone? Thank you..
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Thanks for the words of encouragement lovemistake.  Best of luck with your procedure and Please keep us posted with your status.
A bit of good news with my symptoms is that most of the lower body aches have subsided.  No more heel/back pain for now.  The pains in the folds of groin area have subsided but still there if I think about it.  Had biopsy done on a patch of raised skin (bump) on thigh.  Dermatology results are eczema/dermatitis.  Not what I was expecting at all.  My biggest fear was HPV.  
A bit of bad news.  
   Received urine/blood labs from urologist.  
       Holicobacter pylori positive
       Chlamidia pneumonia >18.5 level
       Loosing large amounts of hair on scalp.  Not sure if its stress related or thyroid issues due to aching throught.
       Still getting folliclelitis on inner thigh.  Baby powder helping some.
      Not sure what to treat first anymore.  Don't want to take valtrex while taking antibiotics for pneumonia.  Also,  don't want to go to Dr with hair issue, he already thinks I should be on psychotic medication.
      I have been following another thread that is extremely related but they have taken discussion to a higher level.  Great read for all of us.  
      I am extremely concerned with a comment by a member by the name of Dammed02032012. He states that he transmitted the virus to his kids even after making an effort to keep his distance.  Hope he replies to my question.  

http://www.herpes-coldsores.com/messageforum/threads/for-everyone-who-has-had-negative-hsv-blood-test-results-but-positive-swabs.55689/page-28


  Still waiting for something to swab.  I will keep posting.
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Just got thyroid test results,  all THS levels normal.  I guess hair loss is due to stress from what I'm told.  The fact that scalp tingles all over I'd making me think its fungal and I may be chasing a fungal infection like JSULL.  I will keep you posted.
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Hi,

I Have also had this type of burning sensation for about 3 years... it was really bad back in 2011, and between 2012-2013 the discomfort was very mild, however, just recently the discomfort came back....I went to the doctor today, and this time I told my doctor this discomfort  is not normal, and I asked many, many questions.... I did let him know I do get a lot of in-grown hairs and I do shave the area ( I have been since I was a teenager) any who, as soon as he looked at my genital area, my doctor said I have a mild case of folliculitis and prescribed me some antibiotic and a cream to apply if I get outbreaks... I hope this helps me because it ***** having the burning sensation... But between 2011 and now all I have done is keep the area cool, dry, wear loose clothing.... well I shall let you all know if the meds work...
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Hi..how are you now..just curious as i have somewhat similar issue, but i think it is more managable and possibly going into remission
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guys what I believe you are all experiencing is Piriformis syndrome.  I have been dealing with it on and off for the last 5 years.  The piriformis is a small muscle in the Glute that once irritated and inflamed causes all kinds of problems with the nerves in the area.  All I can say is that you need to stretch the area with a physical therapist or on your own, Pilates, Yoga etc.  It is a tough thing to diagnose and get rid of. TD
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Is it possible that this is not sexually related at all. I have the exact same symptoms as everyone in this thread and at the time it started I had just finished going through a divorce and had not been sexually active for year's. I've now been suffering with these symptoms for over 3 years now and like everyone else have been through multiple test for sts's and you name it. I have been put on all different kinds of medications with little or no relief whatsoever. I do remember having some abdominal pain prior to having this pain in my groin and thighs and my ball sack sticking to my legs etc and the burning sensation everywhere.  I remember also in the beginning feeling relief in my abdomen like something burst open and the pressure released. Then it almost felt as though really warm water was flowing through my lower abdomen and around my scrotum and even down my thighs like I was peeing my pants but it was beneath my skin. Ever since then it has been like it was acid that flowed through there and it is now eating away at my insides. I'm dying in pain and the doctors have no clue what it could be but I'm almost positive that it isn't sexually related at all. In my case anyway. So if you guys can think of any other symptoms that you may have been having prior to the start of it that might help. I think it was just coincidence that you were having Sex at that time.
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This forum has a variety of similar symptoms but based on what I've read through this forum it appears that this is a SEXUALLY TRANSMITTED FUNGAL infection of some sort with me! Don't listen to HSV explanations if your symptoms are like mine. I believe this to be true because I got minor relief to this with Nystatin and Triamcinolone Acetone cream (used for fungal infections on the skin).
Clammy, itchy, burning groin and balls like nano worms live on the surface is due to contact, in my case, with vaginal fluids! My girlfriend and I were active for years with no issues. We broke up and we hooked up, with a condom, about two years later and I almost immediately had the symptoms that do not go away! The worst thing is I gave this to another sexual partner that really did not deserve this.
Also, the minor relief I received to the Nystatin and Triamcinolone Acetone cream was due to constant re-infection from the partner who I gave it to. Now I'm really about making sure she and I get better together. This is like a super fungal infection that is still very low on the radar where a diagnosis is concerned. Especially if doctors aren't even looking for it. I will try Diflucan next and see what happens. If anyone else has any suggestions or treatments that actually worked, please advise. :/
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I have been dealing with this type of issue or similar that comes and goes for nearly 15 years now. I have been told it is CPPS. Chronic Pelvic Pain Syndrome. Here is an article. My main concern is the part where it may be a warning of future prostate cancer. Please get annual psa tests if you experience symptoms outlined.

http://emedicine.medscape.com/article/437745-overview#aw2aab6b2b2aa
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That sounds terrible.  I'm really sorry you are going though all of that discomfort.  I can't speak for the pain your thighs, buttocks etc., but when I have had itchy, irritated skin on my penis the only thing that has worked for me is a penis health creme.  It might work for you too.  Check it out.  Good luck with everything man.  
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Hi taimaishusz, I have to thank you for your post! About 6 months ago the skin on my penis started to become sticky and my penis was sticking to my scrotum. This was quite uncomfortable for me. I'm 59 and I thought it might be one of those things I just have to put up with as I get older. I started searching for answers on the net, and found your post.
Well, I started taking 1000 IU of vitamin d3 daily along with a multivitamin.
After just 24 hours there was an improvement, with less sticking. And now after just 3 days the problem has completely gone! The sticky skin has returned to normal with no more sticking even if I press my penis against my scrotum. What an amazing result! Thank you so so much for your post! You have been a great help. I wonder, could this sticky skin problem be an early warning sign of vitamin d deficiency?
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Hi, everyone. I've been reading all the posts on here and I want to share my experience in the hope that it helps someone if not all of you. I've noticed that everyone on here has very similar symptoms and I can honestly say that I've "been there, done that". My problem began in May of 1998 after I went horseback riding and yeah coincidentally I had had sex with a girl shortly before that which did indeed turn out to be a coincidence. I woke the next morning to a dull burning pain in my groin which in a short period of time turned into a painful, burning crushing pain that involved my entire left leg, entire middle pelvic region, and started to travel into my right leg also. My bladder burned like crazy if the smallest amount of urine collected and I had strange stabbing pain in my penis. I thought I was going insane. I had the clammy,sticky skin in my groin area also. After dealing with doctor after doctor and being told that it was in my head, I finally got so tired that I attempted suicide . Obviously, I am still here and that's why I want to share my story, because I don't want you guys to get to that point. If you have had the standard tests and they are all negative, then I would suggest that you stop worrying about STDs because that only makes your anxiety worse. For those that have been going from doctor to doctor with no luck, I would suggest finding a pain clinic and start there because from what it sounds like you may have RSD which is Reflex Sympathetic Dystropy. That's what it turned out that I have. When I went horseback riding, I managed to somehow smash the pudendal nerve and that set this all in motion. Once you damage a nerve, it's never the same. RSD is debated among doctors with some believing strongly in it and others denying it's real...let me tell you...it's very real. The slightest injury from getting a splinter in your finger down to the worst accident can set it off, and once it happens, a pain clinic is your best friend. I had to have three extensive nerve blocks to get my under control. After the blocks, the burning went away, all the weird symptoms went away. You have these strange symptoms because basically what happens is the nerve signals go crazy and you begin to feel odd sensations in any area that the nerve may transverse. You may feel burning, itching, stabbing or crushing sensations, but they all are aggravating. Here is an article about RSD that I hope will help someone   http://www.webmd.com/brain/reflex-sympathetic-dystrophy-syndrome. I think this may help some people understand what is going on with them and head them in the right direction to feeling better. ..Here's to feeling better...Sincerely, Steve J.
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Mine started after a car accident after a torn knee meniscus.
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Your symptoms correlate exactly with mine, i've scheduled in appointment with a large clinic in my area of the States, but from what i've read i have very dim expectations.  However, i think we can rule out, based on the specificity of symptoms and their explicit correlation, a diagnosis that chalks this up to a psychosomatic problem of conversion or mental provenance.  I think what we Can agree on is this:

1) its sexually transmitted
2) anti-biotics provide no relief (therefore, it may not be bacterial in nature, though this is not presumed)
3) anti-fungals also seem to have pretty marginal successs based on the anecdotes in this and other forums.
4) if its herpetic it is an entirely novel or undiagnosible strain.
5) It is potentially viral
6) it may to some degree be related to HPV
7) the follicitis in the inner thigh and sciatic region may have something to do with it (and therefore the postules/ blemishes are not folllicitis).  
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I too am with thing now, very early in it apparently. Your post helps me tremendously , Thank you
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Well, I'm here too now, very scared..I guess at about 8 weeks in to this. I have passed it to my wife. Does anyone know the effects longer term on a female, or how they would present symptom? She has warmth at her solar plexus , the size of a hand print, her groin is burning and she says one of her ovaries hurts. I myself happen to be immunosuppressed , so I'm not sure how my body will handle this. My white blood cell count went up, was given augmentin for 2 weeks, the internal warmth seemed to not get worse...but that is all physically, wbc count did lower, but it is rising again. Are any of you still watching this feed?
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what do you mean youre immunosuppressed...are you a solid organ transplant recipient?..and has to take immunosuppressive drug regularly for that?
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guys try Oxycodone 10/325 it will help you a lot i know a friend who's having the same exact problem in the pelvic area.
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I share similar symptoms, especially the clammy groin bit. I'll add I must have infected my eye during that fateful first week because it feels like it has a sore. I suspected Herpes as well because there's a "ocular" strain I've read about.

This test has been out for over a year:

https://www.hhmi.org/news/your-viral-infection-history-single-drop-blood

Has anyone here, or, is there someone out there willing to add to the conversation been to a medical office where this test is administered?

And if so, did the results suggest anything out of the ordinary? You know, not necessarily an STD, but contagious or transmittable?

Seems like "scientists" don't exist in the medical field anymore, they all just want to treat you with the latest and greatest drugs and tell you it's all in your head.

Very frustrating..
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Hi

I have had these issues for over 3 months now. I was originally diagnosed with HSV1 back in July 2015. My outbreak seemed to be pretty tame compared to others. It quickly cleared up within the standard 10 day time frame. Since then I've had no further outbreaks and hasn't affected me at all thankfully. Around July/ August I had sex with a new girl.. After a day or so I began to feel a constant burning sensation at the tip of my penis. Followed by discharge and numbness. I have been cleared of all UTI's, water infections, bacteria infections and the standard STI's. I was prescribed medication for all of these but no help whatsoever! I also was put on an intense dose of the antiviral tablets. Since then I have began to research myself as to what it could be.. Postherpetic neuralgia seems to be the one that I am suffering from.. It's a deep burning sensation that never goes unless I'm in a hot bath. I seem to be getting a lot of thigh irritation like a deep itch and can definitely notice a change in my waterworks with finding it difficult to pass urine and have a weak flow. I have the feeling of needing to go to the toilet a lot! I am currently being treated for prostatitis with doxazosin however after a few days of relief it has come back.  Plus I didn't even have my prostate checked.. I am terrified this is going to be my life now.. I am currently away from England so medical expenses are mounting up and I can't enjoy any part of my life anymore! The stigma surrounded by an issue such as this is horrible. I am going to see another private urologist tomorrow and am praying for some other answer than postherpetic neuralgia but even when mentioning it doctors always quickly dismiss it as they seem to know very little. Has anyone had any similar cases and had answers? I can't seem to find people who have this and have suffered with discharge as well as the coldness and the burning sensation. Surely neuralgia cannot cause a physical symptom such as discharge? Please help this feels like a bad dream!



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This post is not an answer to a particular post or question. It’s a summary of my own experience and treatments for chronic itching and burning sensations, in case the information might be useful.

I had severe chronic itching and burning sensations in my groin and upper inner thigh areas, which built up over roughly 18 months. Medical specialists indicated that it was an unusual form of neuropathy (versus a skin problem or infection). Methods used some months ago to mitigate symptoms, and which incrementally helped, included different clothing, menthol powder, gabapentin, and an “over the counter” (OTC) transcutaneous electrical nerve stimulation (TENS) device. (If you ever intend to try a TENS device, follow the safety precautions and instructions that come with it.) Began taking vitamin B-12 and vitamin B complex roughly seven months ago (as sublingual liquids), and had multiple acupuncture treatments. I am diabetic, which may or may not be relevant.

More recently (a few months ago) a doctor had various lab tests done on my blood. He recommended and prescribed intravenous (IV) infusions of magnesium chloride (along with some vitamins), IV infusions of alpha lipoic acid, some other supplemental vitamins, and referred me to a nutritionist to improve my diet. I recorded and graphed symptom levels day by day over time in order to hopefully identify beneficial treatments and events.

For me, it appears that the (multiple) magnesium chloride infusions have been very beneficial. Starting about three weeks after the first magnesium chloride infusion, the symptoms have been slowly and semi-steadily decreasing to much lower levels as of now (roughly three months after first magnesium chloride infusion). The infusions are spaced at least one week apart. Before the start of the infusions, the level of “magnesium RBC” in my blood was within a “reference range”, although it was towards the low end of the range. It’s possible that some or all of the other things recently recommended, prescribed, and tried are also helping, although I don’t see other obvious “causes and effects” besides the apparent very significant beneficial effect of the magnesium chloride infusions.

I plan to ask if OTC pills containing magnesium might be a long term solution to my problem, given that pills would be more convenient and less expensive than infusions.

Best wishes and good luck to all.
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This post is a short addition to the post done on March 5, 2017 (directly above). Regarding taking magnesium compounds as medication, it is apparently rare but possible to get too much magnesium, especially for people with certain risk factors. Consult with your doctor before taking magnesium compounds to be safe. Further information can be easily found by web searching key word phrases "magnesium overdose" and/or "magnesium overdose symptoms."

Best regards to all!
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Hello again,

This post is an update to two earlier posts directly above.

A few weeks ago I became aware (from the Internet) of medical conditions called Mast Cell Activation Syndrome (MCAS) and Mastocytosis.  The medical community only become aware of MCAS within about the last ten years, and is still early on the "learning curve" about it.  The incidence of MCAS diagnosed within the general population may become quite significant as more research is done, and more doctors and medical people become familiar with it.  Mastocytosis has been known about for a longer time and apparently is very rare.

I believe it's possible that I may have MCAS.  I put together a list of current and past symptoms that are consistent with this syndrome.  Items one and two on my symptom list are chronic itching and chronic fatigue.

If I have MCAS, I'm lucky; in that many people that  have MCAS have more and different symptoms that are much more severe than mine.  It would also mean that the root cause(s) of the symptoms are of an immune system nature rather than neurological.  The immune system and autoimmune processes can affect multiple body systems, including the nervous system.

Here is a web link about Mastocytosis and MCAS.
https://tmsforacure.org/overview/

Another web link (paper) that might be of interest is:
"Pharmacological treatment options for mast cell activation disease"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/

Some people (perhaps including me, it's too early to tell) can get significant relief from MCAS symptoms with widely available and inexpensive medications; whether they have been "officially" diagnosed with MCAS or not.

One last web link (below) is a listing of mast cell disease treatment and research centers.
https://tmsforacure.org/mast-cell-disease-treatment-research-centers/

Last week I saw an allergy/immunology specialist for the first time.  We agreed that for me, getting an official MCAS diagnosis won't be necessary if the simple medications he prescribed and recommended for me "work."  So far (knock on wood) I believe that they are helping significantly.

If these simple medications work for me, it is because they are addressing the root cause of my symptoms (inhibiting inappropriate and/or excessive release of "mediator" compounds from mast cells).

Best wishes
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