I am a 46 year old female, who, with the exception of severe TMJ, is otherwise in excellent health. About 12 years ago, after 2 years of testing, and an initial diagnosis of MS (99% positive), which was later ruled out (80% negative) due to clear spinal tap, I was diagnosed w/ idiopathic peripheral neuropathy. For several years we tried antidepressants and nsaids, but to no avail, as the symptoms were not lessened or relieved in the slightest. Eventually, I simply gave up hope of relief. Other possibilities that were ruled out were Lyme’s, VDs, vitamin deficiencies, diabetes, carpel tunnel, and medication induced neuropathies. I will follow my questions with a list of symptoms… My questions being - Is it possible that I was misdiagnosed, either w/ ruling out the MS or by diagnosing PN? Is it possible I could have something else in addition to PN? I ask this because I continue to read about PN and although I have many of the same symptoms, I have more that are never mentioned in association with PN (at least not that I have found). Is it possible to have “nerve memory” (kind of like amputee’s experience)? What else could it be?
The following symptoms come in what I call “spells”, sometimes lasting days/weeks/months. I have experienced these “spells” for the past 14 years. It seems the spells are coming more often, lasting longer and are intensifying in recent years. I experience these all at once, or several at a time. At no time am I not in pain or discomfort. My best explanation for how it feels is that someone has a Voodoo Doll of me and is poking/proding/ripping/burning/tearing/smashing/smothering/shocking me at their leisure.
Some of my symptoms include (in no particular order):
Dizziness – doesn’t matter if sitting, standing or laying down the world spins
Light headed – again, doesn’t matter the position, feels as though the floor drops out from under me.
Skin sensitivity – ranging in pain levels from 1-10. When severe, extremely painful to have air blow on me, water mist touch me, or clothing touch me. Of course, anyone touching or rubbing me is unbearable. Another thing is that if water runs down my body, it will leave red welts. (Doesn’t matter what kind of water hard/soft/bottled/chlorinated or nonclorinated)
Skin rash- looks like a heat rash, doesn’t matter what I’m wearing or if it is hot/cold, can feel it coming on (prickly, burning, itchy feeling) & lasts a few days usually. Usually limited to chest torso & neck, but has covered entire body many times, including palms of hands, soles of feet & scalp.
Spotted vision – this has only happened a few times – the center of my vision was browned out (I have 20/20 vision)
Feeling of being “drunk” (I do not drink alcohol)
Impaired coordination (My kids and others have even asked if I was drunk)
Feeling of being drugged – can’t keep eyes open
Feeling of electric shock – goes through whole body & lasts for just a second or two, but pain is 10. Heart races after, and hard to breath.
Trouble breathing – as though air isn’t going into lungs. I do not have asthma or wheezing. Feels as though someone is sitting on my chest and my lungs can’t expand.
Urination problems – either can’t urinate, or think I’m done & I’m still going, or don’t feel I am going when I am.
Bowels- either extremely constipated (10 days I couldn’t go, even w/ laxatives) or extremely loose (14 days diarrhea) – doesn’t matter what I eat or drink.
Hearing – ringing in the ears, buzzing in the ears, low bass sound in my ears and plugged ears (like I’m under water)
Heart – races and pounds extremely hard – this just comes on even when lying down, sitting or standing.
Indigestion & heartburn – doesn’t matter what I eat or drink or if I don’t eat/drink. Ulcers were ruled out and Nexium or Tums doesn’t help.
Pain – ranging in levels from 1-10 this is difficult and almost impossible to explain, except as I said earlier about the Voodoo doll or my body has remembered any pain/feeling I’ve ever felt and is now re-experiencing it in unexpected places or ways. Pain can be in one area of my body or all over my body. The pain can be anything from pins & needles (which actually happens quite rarely), to feeling as though my bone marrow is on fire. It can feel as though someone has beaten me with a baseball bat (phantom bruising has occurred on occasion with this), or is putting a blow torch on me or that I’ve gotten a really bad sunburn (My skin has actually turned red and blistered with this feeling). A feeling that someone is ripping the muscles or tendons out of me. Or that I am being squished in a vise. I really could go on & on w/ the pain and types of pain, but I will finish w/ saying I can experience one or all of this at the same time and in conjunction w/ the other symptoms.
Numbness – can be like coming out of Novocain to completely without feeling. (Twice had absolutely no feeling in legs) Usually in lower legs/feet/toes and hands/fingers.
Coldness- if lying down and legs are lifted even an inch, feels as though my blood has turned to ice water.
Skin wrinkling – I don’t know what this is called, but it is like when you’ve been in the bath too long, except it happens any time of day/night when I haven’t been in or near water.
Anyways, this is by no means the complete list of my symptoms, but any help or advise you can offer (even a direction to look) would be greatly appreciated.