Do I need to deep dive diagnosis?
I like information. Sometimes that is good. Sometimes that just becomes a gathering process.
I have had the Electrical diagnostic test. I was told idiopathic peripheral neuropathy
I read on here— there is not a definitive cure. Many have small successes doing a myriad of different things to lower symptoms.
So is there any reason to go to a bigger and better neurologist ? I did see a young inexperienced neurologist. The dr that did the electric test. Walked in walked out. Sent results.
From what I gather -and what I have read is
the results are the same after many drs and other tests.
Some pain meds.— A few ALA maybe B-12 Magnesium for some. From the doc not much else.
Do I need a biopsy? Or other tests to confirm what I have been told?
Am I over simplifying this ?
Would it make any difference in my outcome - or am I just gathering information?
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@mrmacabre Not true. In many instances nerves can regenerate. Do better research.
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1 Reaction@proteusx That's not what the 3 neurologists that I saw told me.
Yes, they often say that categorically, but what is else is new? They are misinformed. Standard of care for most forms of neuropathy is either entirely lacking or highly deficient. Neurologists typically do nothing more than dispense pain killing drugs that have zero impact on the underlying causes of PN and come with serious long term side effects. I can cite scores of papers demonstrating nerve regeneration but you need to do your own research, as do the neurologists you make reference to.
@proteusx Either way, it's not going to help me in any way even if I did believe what you've stated here. I've been living in constant chronic pain for over a decade now from neuropathy and osteoarthritis. In that time my levels of pain haven't decreased, they've only become more severe, to the point that I have a hard time just walking, at the ripe old age of 67.
I've had every test that can be done to try to determine the cause of my neuropathy more than once, after seeing 3 neurologists over the course of 7 or 8 years. And all that I got was the standard "idiopathic" diagnosis.
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1 ReactionSorry to hear it. It is a terrible disease with woefully little progress being made. Some have reported success with Qutenza, the high dose, specially-formulated capsaicin drug, approved by the FDA for diabetic PN. It can be used off-label for various other forms of PN. It was approved for neuropathic pain, but post-approval data indicate that it can also regenerate some nerves, addressing the underlying problem. It is actually more tolerable than the lower-dose over-the-counter capsaicin preparations owing to its unique formulation. It has to be used over a period of a year (four applications three months apart) to be effective. Scrambler therapy, used and studied at some major medical centers here and abroad, has also brought pain relief to many . Also attracting attention are magnetic "Axon" therapy used at VA hospitals and elsewhere and carboxytherapies that have recently demonstrated efficacy in chemo-induced peripheral neuropathy and some other forms of PN. A topical form of pirenzepine may be approved in Europe in the next two or three years, and it also shows some nerve regeneration in addition to pain amelioration. Just a few possibilities. There are others that have some real data behind them, as well.
@mrmacabre. I am not a doctor but I can speak to personal nerve regeneration. I had surgery on my tongue many years ago. So many nerves there and my tongue tingled for years afterward. I can tell you that no longer happens so I believe my nerves did in fact regenerate. It took many years however and if you are older like myself living with PN I don't think I will be alive by the time they might.
@mrmacabre
Very similar situation to yours.
However, I am 78 was actively playing pickleball with just Neuropathy in my feet. Then something g reacted one day in my legs, where I could no longer stand on the court .
Then it seemed my Osteoarthritis kicked in , and now dealing with both pains.
I tried both Gabepetin, and Lyrica or Pregabalin, but don’t believe I was on either long enough. I have restarted from the beginning with Gabepetin , and will stay on it two months. If I can contain the Osteoarthritis discomfort, I’m intention is to return to pickleball solely for the movement and exercise. I will update as I proceed. Using Topical Voltaren currently with a knee band for my one knee.
Best Regards, Gene
@proteusx Apparently you have not taken Anatomy and Physiology in college. Yes, there are a ton of articles out there about nerve regeneration and it is speculation because currently nerves do not regenerate once they have died off. How long have you had neuropathy? For me since 2002 when I got mrsa bacterial spinal meningitis mine has moved into the axons and anywhere there are nerves it moves. Cardiac autonomic neuropathy -aka CAN fun unmanageable blood pressure and arrhythmias, dysregulation of your body temperature, and you gotta look love the bladder problems or when you no longer feel your arms and legs. How many times have you ended up in the emergency room cutting yourself while trying to cook and get stitches because you didn’t feel the knife cutting you? I sure home you are not a medical doctor as long as some of us have worked in the medical field there is not one instance of nerve regeneration in the US. In Panama and Switzerland they are using the umbilical cord and stem cells for regeneration. You have to know how many subjects and their success rate. How many got the placebo and how many received the stem cells. Which these two countries have not released. Switzerland does not do stem cell therapy in Switzerland they send you to another county. Most people don’t have 50,000 dollars to spend. True stem cell therapy is not authorized in the US. Telling people there is a cure is wrong. I have seen two research neurologist Dr Oaklander (Boston- mother was a research neurologist for neuropathy and so is her daughter) and another one. I have been told there is no cure.
Mine is all autoimmune related.
Small fiber neuropathy with biopsy. Severe axonal sensorimotor peripheral polyneuropathy, CAN, dysautonomia and CIDP diagnosed last year.
Autoimmune- mixed connective tissue disease, lupus, Hashimotos and Sjogrens.
You can’t heal neuropathy until you find a cure for the autoimmune diseases causing the neuropathy. You talk about others doing their research you need to do your research.
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1 Reaction@artemis1886 your comment is so incoherent and full of misinformation I wouldn't know where to begin to correct you, and, in any event, you apparently do not want to be "confused" by facts. Good luck to you, nonetheless. And, by the way, yes I did take all of the pre-med courses, including those you referenced along with a whole lot of others in medicine.
https://www.foundationforpn.org/stem-cell-treatments-a-real-hope-or-false-promise/
@johnbishop - proteus’s is claiming nerve regeneration
What am I missing? There is speculation but once a nerve is dead it is dead.
There currently is no cure. There is nothing confusing about that. If you took anatomy and physiology in college nerves do not regenerate. They teach you that in college one a nerve is dead how do you regenerate it?
You can’t. You can t bring something to life that is dead.
When heart tissue dies you can’t regenerate it. You can have a heart transplant.
For those of us that have cardiac autonomic neuropathy Aka - can that can’t control our blood pressure and our heart jumps from bradycardia to tachycardia and we pass out my electrophysiologist laughed when he read your post. There is no way to regenerate heart muscle. Neuropathy causes muscle atrophy. So when you get cardiac autonomic neuropathy you are given eight years left to live based on how it progresses. Tell me, cardiologist and electrophysiologist how you are going to regenerate all the hearts out there with neuropathy? How are you going to regenerate all the nerves in people who no longer feel their arms and legs? Wait what about the people that can no longer walk.
My neuropathy is caused by autoimmune not diabetes or being over weight, So tell me since you are telling people there is a cure how do you cure autoimmune diseases that cause neuropathy L
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