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Neuropathy or Something else?

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.
Blurred vision
Spotted vision – this has only happened a few times – the center of my vision was browned out (I have 20/20 vision)
Light sensitivity
Feeling of being “drunk” (I do not drink alcohol)
Slurred speech
Impaired thinking
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.
Thank you.

4 Responses
Avatar universal

I know you've studied your possible conditions, but I think if you would read the descriptions, symptoms, causes and treatments at the above link to the Mayo Clinic website, you will find that you really do sound like you have peripheral neuropathy.  The thing of it is, though, is your doc said it was idiopathic, of unknown origin.  He did check for diabetes, but there are other possible causes on that website, that if one or two of them sort of rings a bell for you OR has not been tested, then you can go to a physician who specializes in a particular cause that might fit you, and let him try to see if you've got some particular disease that is doing this to you.  I also think you should be re-tested for diabetes, especially if your blisters tend to be in pressure places like the feet.  Also, the medications your doc tried are not the only ones that could bring you relief.  I have back trouble and I take several medicines to keep my discomfort under control, which Lyrica (pregabalin) is really good for pain and is also one of the drugs given to peripheral neuropathy people.  It has to be increased pretty dramatically the first month or two, which any doc who prescribes it should know this, until you reach a plateau of comfort.

I happen to have peripheral neuropathy from some chemo I'm on now, and wow, it is one tough situation to be in.  I am like a 100-year-old person, even with drugs, altho they make the situation tolerable.  Back of my hands and my feet are red, hand skin is wrinkled, both are swollen, painful, and some fingers and toes are numb, and it works up my arms and legs, even my elbows hurt to put pressure on them, and like you, I cannot stand rough materials on my skin, I turn pajamas inside out because of seams, and if I had to live like this all the time, I'd have a nervous breakdown.  

Since I know what is doing this, I can make it through.  But you do not know what is causing yours, which it IS possible that you won't match up to any cause despite further investigations, and that is a sad state of affairs for you.  But as I said, there's plenty more medicines to give to make this more bearable.  Also, I hope you can find at least an online peripheral neuropathy support group that suits you best, I visit one for the cancer I'm dealing with.
Avatar universal
Thank you for taking the time to respond. I have continued to check for diabetes, and while I am thankful the results are still negative, it would be nice to have an answer other than "idiopathic". I've also tried every pain med known to man, or it feels that way, and unfortunately, none has offered any type of relief. Some have even gone so far as to basically knock me unconscious... and while in that state I didn't consciously feel pain, my husband said I was still crying out or moaning, so apparently I was still experiencing pain even though I didn't realize it. And being unconscious is certainly not a way to live life. I do try to keep in a positive frame of mind by reminding myself that feeling pain means I'm alive ... and that sure beats the alternative. When I can barely walk, I remind myself that no matter how painful, awkward, or funny looking my walk is... at least I can. I also have found self-hypnosis, visualization and relaxation to be of the greatest help, at least when it comes to getting some sleep. Anyway, thank you again for taking the time to respond. I wish you well.
Avatar universal
Hi there. You have multiple neurological symptoms which need to be investigated for multiple sclerosis. MS is a chronic demyelinating disorder where the disease phase is characterized by active phase and remissions. It has multiple symptoms and signs and is a diagnosis of exclusion. The symptoms of multiple sclerosis are loss of balance, muscle spasms, numbness in any area, problems with walking and coordination, tremors in one or more arms and legs. Bowel and bladder symptoms include frequency of micturition, urine leakage, eye symptoms like double vision uncontrollable rapid eye movements, facial pain, painful muscle spasms, tingling, burning in arms or legs, depression, dizziness, hearing loss, fatigue etc. The treatment is essentially limited to symptomatic therapy so the course of action would not change much whether MS has been diagnosed or not. Apart from clinical neurological examination, MRI shows MS as paler areas of demyelination, two different episodes of demyelination separated by one month in at least two different brain locations. Spinal tap is done and CSF electrophoresis reveals oligoclonal bands suggestive of immune activity, which is suggestive but not diagnostic of MS. Demyelinating neurons, transmit nerve signals slower than non-demyelinated ones and can be detected with EP tests. These are visual evoked potentials, brain stem auditory evoked response, and somatosensory evoked potential. Slower nerve responses in any one of these is not confirmatory of MS but can be used to complement diagnosis along with a neurological examination, medical history and an MRI in addition, a spinal tap. Therefore, it would be prudent to consult your neurologist with these concerns. Hope this helps. Take care.
Avatar universal
Thank you for your response. As I said in my original post, I was initially diagnosed positive with MS, but because of a clear LP, the neurologist changed the diagnosis to Idiopathic Peripheral Neuropathy. To be clear, are you saying that a clear LP does not preclude a person from a diagnosis of MS? Is it possible to have BOTH MS and PN at the same time, or could the MS cause PN? If I were to go through a list of symptoms for both MS and PN I could check "yes" to every symptom, and while many symptoms overlap, many are isolated to one or the other, which is why I, and apparently my previous neurologist, are so confused. I realize that neither is curable, it would just be nice to know what I have so when I am having a "bad spell" and have to make excuses, I can with some certainty say it is because of having ______.
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