Neuropathy - Can It Improve And Other Questions

[Anoj]

Lately I have really been thinking about my neuropathy. I was diagnosed by a machine called a "pseudo scan." I have no idea what that is. The test was performed by my cardio, but he never followed up after telling me I had mild neuropathy.

Fast forward about a year and a half later, and I am definitely exhibiting more signs of neuropathy. I am still pooling when I stand, and in the mornings, when I take my first steps out of bed, my feet feel incredibly tingly. Sometimes when I'm falling asleep, I even feel I'm exhibiting some signs of restless leg! I don't know if that is related to neuropathy.

Anyway, I found a neurologist here in town who has some experience with POTS, so I decided to schedule appointment to discuss my neuropathy. I feel this is where I need to focus my attention right now.

The only things I've read about neuropathy and POTS as far as treatments go is IVIG. I want to know if IVIG is the only treatment for this? It seems like to get IVIG you have to live in a certain area or be willing to travel. I'm not ready to travel for treatment.

Are there any treatments for neuropathy that actually help repair the condition? One doctor wanted to put me on Neurontin, but I discovered that is for symptoms and doesn't repair the problem.

I was also scheduled to have some type of nerve test done, but someone here mentioned that it was the wrong test (large fiber, as opposed to small fiber). I don't know if there is anything for small fiber testing in my area.

I've also read about alpha lipoic acid and plan to take some, although I'm concerned about it interfering with my thyroid medicine because I read that it can mess that up. (I am in the process of increasing my Synthroid as we speak.)

What I really want to know is if there is any real treatment or HOPE for neuropathy getting better. I am starting to believe that my POTS will not get better unless the neuropathy is addressed.

Oh - another thing I am wondering about is vasoconstriction. I have read many places that smoking can contribute to neuropathy. I was a smoker before I got POTS, so I am suspicious. Apparently it is the constrictive action of nicotine that causes this. Also, a very important question - If constriction contributes to neuropathy, then SHOULD WE BE TAKING MIDODRINE? Midodrine helps me feel better, but I am concerned that I may be making my neuropathy worse!

I plan to ask the neurologist all of these questions. The guy works with fibro patients and has an independent practice, so he seems pretty open-minded (knock on wood).

Thanks in advance for your insight.

[Guest Alex]

Anoj,

first of all there are several types of neuropathy depending on the types of nerves involved. There are probably over 100 types of peripheral neuropathy: small fiber neuropathy, autonomic neuropathy, compressive neuropathy, drug induced neuropathy, diabetic neuropathy and so on and so forth. Neuropathy can affect sensation (sensory nerves), muscles (motor nerves) or the function of the internal organs (autonomic nerves). A person can have one or several of these going on at the same time.

What you read about IVIG as a treatment for POTS related neuropathy has to do with a condition called Autoimmune Autonomic Neuropathy (or Ganglionopathy). The way to diagnose that is a blood test looking for an autoantibody called ganglionic-acetylcholine autoantibody (Mayo performs this as part of their autoimmune dysautonomia panel).

The test that is used for diagnosing large fiber neuropathy is a nerve conduction study, and for small fiber neuropathy you can have a QSART (Quantitative Sudomotor Axon Reflex Test) or a skin biopsy.

I am not sure what type of neuropathy you're dealing with, but your dr prescribing neurontin makes me think it's the sensory type. Usually the approach with neuropathy is to find and treat the underlying cause and to control the symptoms.

Can't really answer the constriction-neuropathy question, but to the best of my knowledge midodrine does not cause or contribute to neuropathy. I don't exactly understand the connection you're trying to make here.

I hope this helps to some extent.

Alex

[looneymom]

Hi Anoj,

Neuropathy can be hard to diagnose. My son suffers with pain daily. The worst is the scalp and headache. He is very sensitive to touch. The cardiologist that treats my son thought it might be related to some of his medications that he had been on so long. So we have done some trial runs of taking him off these medications and discovered that the medications have nothing to do with this. Some autoimmune antibodies will cause neuropathy and metabolic disorders will cause neuropathy. Our cardiologist has started to explore these options because my son's POTS condition does not seem to be improving. Hopefully you have found a good neurologist to help you explore this area. Keep us posted on what you find out.

Rachel

[Anoj]

thanks, alex, that was all very, very helpful. i have read on numerous sites that smoking can cause neuropathy becs of the vasoconstriction action, so i made the connection between vasoconstriction and midodrine. i recall someone on the forum saying before that they were concerned and/or had stopped midodrine becs of neuropathy.

i have no idea what type of neuropathy i have. my endo prescribed neurontin as a stab in the dark. he had good intentions and was trying to help me, but it's not his area.

i'll let you know what the neuro says. appt. is in several weeks.