Peripheral Nerve Hyperexcitability (PNH) Community
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Allover pain burning pins/needles stinging breaking out tinnitus skin sensitivity

I've got the gambit it appears.  It started over 8 months ago.  The first thing I noticed was itching in my “private area”.  Upon inspection I saw some wart looking sores and what looked like paper cuts.  In a few days time the itching progressed into major rectal itching and some sores at anal crack area.  Then in a few more days, less than a week, it felt like my pubic hair, I know this sounds weird, but it had a life of its own.  It felt like it was moving, like something was crawling through it.  I then began feeling major burning in my “private area”, as if I had a major yeast infection.  When I went to use the bath room it felt like I was wiping with icy hot.  When I would sit, the back of my legs, private area, rectal area would burn and itch like crazy.  I thought I was going insane.  The sensation moved down my leg to my knee caps, then into my feet.  I also experienced pins and needles feeling and I have had several times where it honestly feels as though a knife is on the inside of my skin and is piercing me to get out.  The stinging, burning and pins and needles moved down to my feet and I started having sensations, like tingling, but in a creepy way, going up my back.  Then it radiated out to my arms, mostly the back of my upper arms and the top of my lower part of my arms.  I have had times when what ever this is has moved into my fingers, and there was a few days I could not bend one of my index fingers, it felt like wires were in my finger and they had no give, it was so painful.  I have had all of this radiate up to my face, and into my head.  I have always had mild tinnitus, but know it is severe ringing, very high pitch in my ears and I will also experience times when it seems like my hearing is going out, but it comes back.  I know this all sounds so bizarre, you can not imagine what it is like living with this.  I was crying daily for several months and I have become severely depressed.  This also has affected my eyes and I get very weird pains in my head, I can not explain what they feel like, more like pressure.  I am having an extremely difficult time finding a Dr. who cares about what is going on with me and willing to listen and offer testing and/ or options.  
The sores in the private and anal area only happened back in December, they have not appeared since.  I also experienced warts breaking out on my hands, especially fingers, and every time this happened there was stinging and pain, which alerted me to the wart (these were finally identified by a natropath, all other Drs I saw and showed them the raised blister looking growths, all very small, did not know what they were.)  I had a few that were bright red, but went away.  I have 5 that still remain and have been there for over 6 months.  I also experience what looks like paper cuts, which appear out of no where on my fingers. Along with all of this I had an episode in the very beginning where my mouth broke out on the inside with canker sores and blood blisters.  These went away after about a month, but I occasionally get what looks like a white head right on my lip.  I am 52 years old and never experienced any of this before last December.
I have been STD tested several times.  Last time for all STD's was in June of 2012.  All are negative and ones which have ranges all come back extremely low.  My gynecologist says this is not an STD, and no reason to test anymore, I am not sexually active at all.  I saw an allergist who said this was cat dander and dust mites, simply because these were the only tests, other than some food tests which came back high.  I do not believe dust mites/cat dander is my problem.  I found out I have two compressed disks in my back, I went to physical therapy and the therapist says this is not related to my back.  I have had several blood tests done, all come back fine, other than my immunoglobulin IGE was 400 and is now it is 425, but I have seen on the internet people who have this in the high thousand range.  My ANA test was at 40, I do not know what this means, I am told this is elevated too.  I found out I have been exposed to Epstein Barr, and also that most of the world has been exposed at some time and this is not my problem.  Before all this happened I had pneumonia several months before, had my appendix removed and then had my first bought with kidney stones.  Then a month after the kidney stones, which was October 2011, all of this happened.  Some of this has “died” down a little, but it is not gone and I will have days that it comes on like gang busters.  One Dr said he thinks I have Lyme disease, but the test came back negative.  According to him I have to pay for a “special” test which is over $200, but I am not sure I should spend the money if the general blood test did not show anything. One natropath I saw said I should go on a low oxalate diet.  So I researched this and found something called Vulvar Pain Syndrome.  It was the first thing I read that listed all most all of my symptoms, but I have no idea if this is what I have and if so, can it become systemic, meaning, can it cause my tinnitus problem and the pain all through out my body.  Could I have more than one thing going on?  I am following the low oxalate diet, but it is very difficult, as most foods contain oxalates, and I am allergic to milk, which has no oxalates and is a main staple for the diet.  I have worked with metal all of my life making jewelry, but no Dr seems to know of a really good blood tests to see if this is metal/chemical toxicity.  I had a urine test done, where I took some chelation type pills before hand, collected my urine for several hours and mailed in a sample.  This test seemed very basic, just a handful of heavy metals were tested, and only three came back very slightly in the medium category.  I did do a hair analysis for one Dr.  and it showed very high, 10 times the norm, or vanadium in the hair analysis, but all the Drs say that since this is a trace mineral and not considered a heavy metal than it doesn't matter, but I think this does matter.  What if what I am suffering from, or at least part of it, is vanadium poisoning?    I am told I have a neuropathy issue, but what the heck is this.  I really need help.  Please, please, any advise??  Where I live, there are not many specialist and I have been told my two gynecologists that I need to go to another area to find better Dr.  Pleas, anything you think I should be tested for, becaue I am getting very feerful and I am a single mom raising three children, who see me falling apart.  Thank you very much..
2 Responses
Avatar universal
Have you found the cause of your symtpoms? I too experience a lot of what you've described but mine presented systemically as opposed to starting in one area and spreading. I've been tested for almost everything it seems. My eyes ears and throat even have burning stinging sensations and am highly sensitive to heat and the sun. Also have rashes but my sed rate is normal and all lupus tests normal. I'd truly appreciate it if you've found anything or what worked for you!
Avatar universal

Any remedy in sight. I am also experiencing these strange symptoms and more. Tinnitus is mindblowing experience.
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