Nerve Pain And Numbness-Need Help

[friday7]

HI. I have had different kinds of nerve pain in the past few years. I'm trying to better understand exactly what kind of illness POTS is . I mean I know about Dysautonomia and that has to do with the autonomic nervous system. But I"m not sure really what it means. If I have POTS do I then have Dysautonomia?

I went to a Neurologist before I was diagnosed with POTS. And he took some basic tests and then said I was cleared as far as Neurology . In other words there was nothing wrong with me that had to do with Neurology. I mentioned POTS but he never heard of it. He then sent me to a Cardiologist because of the Taccycardia..He didn't help either. I finally went to a CFS specialist who Diagnosed me with POTS but I can't really see him because he doesn't accept my insurance, and I can not afford his fees. I saw him the first year I was daignosed and we tried several meds, but my it was hard to pay the fee. Now my father has passed and my Mom and I are just trying to pay the rent and eat. We have no money for this doctor anymore.

So, I just see a regular GP.

Now I know there are certain disorders that are neurological. Like MS, Parkinson's,Epilepsy, and I know there are certain conditions like diabetes that have Neurological symptoms, such as Neuropathy. I'm trying to figure out how POTS fits in here. Is it a neurological disorder, or is it like diabetes , where it has symptoms that are neurological?

The thing Is I have had nerve pain and numbness for a few years now and I have never gotten any help with them because as far as the doctor's I've seen are concerned I don't have anything that qualifies me to see a neurologist. And the Neurologists I've seen don't recognize POTS as causing these symptoms.

Like I have some burning pain occasionally. It feels exactly how my father, who was diabetic, described Neuropathy. (I've been checked for diabetes and I'm hypoglycemic but not diabetic)

I dont' get this pain often, Thank goodness, but it happens. Sometimes it feels like a burning hot needle just stabbed me in the foot and then it goes numb. Luckily it doesn't happen often but I do get numb toes off and on. And sometimes my legs get numb. And it is largely ignored by my doctors. As far as I've read about POTS, it is not uncommon to get neurological, nerve pain or numbness. Is this correct?

Another and more troublesome nerve pain I have trouble with is vaginal and clitoral pain and numbness. This is very upsetting because I've been to the Gyno and as we've looked for Endometriosis. Didn't have it. I had a polyp, that was suspected and causing this pain but I had it removed and I still have the pain.

I had my ovaries removed but that was three years ago. The only thing he can't come up with is that I"m still getting used to being in Menopause. I understand that since my Menopause was caused surgically, that it would be sudden and might be severe. But it has been over three years and I feel my body I already went through that . I went through being on HRT and then not needing it anymore because all of the hot flashes mood swings etc were gone about a year ago.

I also dont feel like that's the cause of the pain because I started having the numbness a few years prior to the operation. It's just gotten worse over the years and now it also includes pain.

It just seems from what I read like it's nerve pain. And since I have POTS this seems to make sense. But I dont' know how to get help with this.

The doctors I see will say yes, I understand you have this thing called POTS but since I'm only going to treat what I know, I'm not going to recognize you have anything wrong neurologically.

So I don't know where to turn.

I guess I would like to know if others have experienced nerve pain. Especially, vaginal or clitoral,...but any nerve pain, and how have you been treated for this and by whom (what kind of doctor)?

Also I am trying to understand, Dysautonomia, what is it exactly? If we have POTS does that make us have Dysautonomia and is it that normally treated by Neurologist?

Sorry if this sounds dumb but I have vague ideas about this and I'm just trying to just more clear on it.

[Birdlady]

Have you ever had your B12 levels and a urinary MMA (Methylmalonic acid) checked? It could be a b12 deficiency. I have to take daily subcutaneous injections of B12 (2500mcg) or the numbness and tingling will return within a week or 2. What you described is exactly what I get too. It's almost like a sunburn, tingling and stabbing feeling on the skin. My left leg starts to go numb and falls asleep very easily too. The B12 injections take all of that away though so I've stayed on them regardless of what my serum levels look like. If you already supplement with B12, then you have to get your urine methylmalonic acid levels checked as serum levels will be falsely elevated and look normal. B12 serum levels under 400 is too low.

[friday7]

Have you ever had your B12 levels and a urinary MMA (Methylmalonic acid) checked? It could be a b12 deficiency. I have to take daily subcutaneous injections of B12 (2500mcg) or the numbness and tingling will return within a week or 2. What you described is exactly what I get too. It's almost like a sunburn, tingling and stabbing feeling on the skin. My left leg starts to go numb and falls asleep very easily too. The B12 injections take all of that away though so I've stayed on them regardless of what my serum levels look like. If you already supplement with B12, then you have to get your urine methylmalonic acid levels checked as serum levels will be falsely elevated and look normal. B12 serum levels under 400 is too low.

I don't think I ever had my B12 levels checked. And I know I never had Urinary MMA checked.

I also get a feeling like bugs crawling on the skin. But I think that's restless leg syndrome. I usually get that when I'm trying to sleep and it helps to take Magnesium. But this other pain and numbness doesn't respond to taking the Mag, so I figure it's something else.I'll see about getting my B12 levels and Urinary MMA checked . Thanks:)

[marshallgurl]

I have suffered from the burning sunburn like pain in my legs for years now, at least I know i'm not the only one. And Friday7, I know exactly how you feel about not knowing where to turn. I see a Cardiologist for my Tachycardia but there doesn't seem to be anyone else who has any clue what POTS or Dysautonomia is, and that makes it very difficult to deal with the issues that we have when there is no one to go to for them. I have finally had enough of being run around in circles from one doctor to the next, so now I'm going through the list of providers on the Dinet site to find someone to go to that isn't too far from where I live.

I wish you the best and hope that you find some answers to your questions, since I didn't manage to answer any of them in my response.

[Sallysblooms]

I have no idea why most doctors are clueless about POTS and supplements. Nueropathy is very often the reason the muscles do not squeeze the blood vessels correctly. I have read a lot and even bought a textbook about the autonomic nervous system. Guess many doc forgot to read it...

My doctor told me about lipoid acid. I take Lipoic Supreme. It is given to diabetics for nerve problems. You can learn about it. Maybe you can find a doctor that is knowledgable about supplements.

I had lots of problems with my feet and started taking the dose my doctor told me to take. All is fine now, I started early. I wish all doctors knew easy things to help but most do not. Very odd to me.

[Chaos]

It's my understanding that Dysautonomia is an "umbrella" term that covers several different types. POTS is one of the sub-types under the general term of Dysautonomia. (NMH, PAF, etc would be other types under the same umbrella).

Seems like a lot of us here have a similar pile of symptoms that include hypoglycemia and numbness and tingling. Sure seems like it's all linked together somehow. Wish we could figure out how.