I would like to ask a very funny question...

How come that people here in this forum know so much about neuropathy - can tell about the couses, what kind of tests we have to do and even what supplenents are better to take and in what condition.
And - our doctors that learn so many years and specialize in this field - don't have any answer.
I know that this is a kind of no answer question - but I have to ask it.

there are so many diseases and medications (after all they are medicine drs) and there is no one thing that works for everyone all the time and there is no cure so who knows us better than us

i don't have pn amit...

but the members here do. they live it. they know more and research more then any dr does. they share their experiences and knowledge.

they are awesome.

When I was 30. (32 yrs ago) I didn't know what it was. I assumed it was from standing all day long in my job.

When I finally had some extensive thyroid tests including a scan 15 yrs later...and given thyroid hormone treatment, and my feet woke up and the terrible pain finally subsided ..bingo.
I had my answer. (I also had severe carpal tunnel especially during my pregnancy).

When I started my investigations into alternative supplement use for preventive medicine over 10 yrs ago, I found the TONS of information on PubMed. One only has to look there and be motivated to do so. I have training in chemistry, biology, biochemistry, drugs, pathology, etc and can read and understand most of what I find.

I started on the internet in 1998 and found another health board where Rose was posting. She taught me about B12. While learning THAT, I discovered the biochemistry of methylation, and expanded to other systems.
Then I met jcc and learned about gluten intolerance, and malabsorption. Then Glenn joined us, and he has a mind for the tests. He was very aggressive himself for getting all the tests needed, so he helps here with that aspect. He is also a very good communicator! Liza Jane made the spread sheets for recording those tests logically so doctors could easily use them.

Each time one does a keyword search on the net, things come up. It is sort of like going down a branch of a tree and visiting many leaves.

The way science works today is so specialized, we lose sight of the whole. I found interesting researchers in my searches which gave me hope. Since I have extensive experience with drugs and patients (I see everything) I put 2 and 2 together.
25 years ago it was rare to see PN in younger people. Only the very old had it. Now we see that changing considerably.

Today the new trends are for mitochondrial support. This is for aging, and also to understand damage from drugs, toxins and vaccines. Dr. Bruce Ames has done enormous work in this area.
You can Google him.

So my perspective is two fold.... my professional work, and my personal suffering.

Many people on this forum have been here (we moved from another place a while back) as a group for a long time. We learn from each other, and collectively appear to be "experts"

The reason doctors don't "know"? Well it is complex and they have to know so much, one cannot expect them to follow all the research on everything! (besides the drug industry has taught doctors to only use their drugs---to make $$. There is no incentive to heal people, just keep them drugged and feeling no pain). Not all can be healed. Severe damage from poor cardiovascular issues, dead neurons, amyoidosis, and genetic failures over time, take a serious toll. Those patients need drugs to remain comfortable. But not ALL PNs are that extreme. The peripheral nervous system is capable of regenerating, and doctors patients see ARE taught this. They just don't know how to enable that healing, YET.

because mine was progressing steadily and occuring at the same time as developing asthma and chronic respiratory infections, i felt very motivated to learn what i could since i had no idea where the whole thing was heading. I had never heard of peripheral neuropathy. I knew i had it from reading on the net and visiting the " other" site before i was diagnosed by a doctor. To be fair to the doctor, he did diagnose me quickly but then told me i needed to go to get a nerve biopsy which would have been a big mistake. Anyway i think motivation promoted by you being the one who ails goes a long way in education of a disease or condition.

Are you saying there is no cure for PN? If you believe this, you are out of date. Many people with PN get better. Better enough to no longer need heavy duty medications.

Only certain ones, may be unresponsive.

The peripheral nerves are capable of regenerating. (unless they are dead). Dead nerves do not hurt, so if you have pain, you can potentially improve. If you have poor blood flow to the feet due to blocked blood vessels, your prospects are also low.

You have only to open your mind.

Research, research, research!!! I learned from Braintalk in the beginning, then Neurotalk...all these great people here. I went to the doctor knowing I had PN and asked to be tested.

I finally found a very good doctor, the path to him has been an uphill climb. Many disappointments along the way. Even now, I still leave feeling let down often times.

I guess I didn't answer your question...oops!!!

The hard way? It's a matter of self-defence, from ignorant doctors, bad testing, outdated knowledges in the professional fields and all that.
Neurologists and all docs for that matter have to keep up with hundreds or thousands of medical issues! Neuros alone have well over a couple of hundred conditions connected to neuropathies alone!
Good, that is, really GOOD docs actually like the fact that you are more aware of what you have and what all has to be done about it than most.
But...a word of caution? Most of what we all cite here are MEDICAL Papers, news and the like so say you've learned from this medical paper or that medical web site about X, Y or Z... Why? Because we here don't practice medicine. We simply share what we've learned with you. If you just say: 'I got it from a web site', you could be written off as a looney or worse. Last thing in the world we all want!
Self defence, self preservation or whatever... we share and do what we can to understand what all is happening to us and to get by. No one should have to reinvent the wheel in this day and age. People here are super kind and patient as a rule also on how to find things.
I hope this helps you to learn as much as you can handle and then learn even more about it all! Keep at it and you will for sure. 's - j

Seems to me that peripheral neuropathy, meaning malfunction of the peripheral nerves, has a number of underlying causes. In some cases the cause is fairly easily identifiable eg diabetes, in other cases it is very difficult to find, so the medics call it idiopathic or cryptogenic. In some cases it progresses, in others it is stable or slowly regresses depending on the cause.

It doesn't seem surprising that treating the condition is difficult and that the success of different medications varies a lot from individual to individual. But this doesn't condone the lack of research, quite the opposite.

--on this board and others, a number of times; peripheral neuropathy is the most common condition nobody knows about, and the like.

Part of this may be that neuropathy is considered to be secondary to other conditions that get more publicity and research. There is neuropathy secondary to diabetes, resulting from toxic exposures (especially chemotherapeutic), caused by autoimmune issues, and so on. The doctors who specialize in these conditions, such as endocrincologists, oncologists, and rheumatologists, are sometimes aware of neuropathy, but are not well-enough versed in the area, or feel uncomfortable enough with the "additional" complications. So often the condition, even if recognized in the back of a doctor's mind, goes unremarked upon, and untreated.

Then, too, as dahlek implies, your average neurologist feels much more grounded in conditions for which there are more specific findings than there are for neuropathy, such as stroke, myasthenia gravis, MS . . .there are not that many neuropathy specialists out there, and such docs may be next to impossible to find if you don't live in an urban area with teaching/research hospitals.

Plus, many of the people with the condition have the "no-see-um" kind--primarily sensory, involving numbness, balance issues, pain, tingling, and the like--but they LOOK more or less OK, and so there are credibility issues. (I've found the people with motor involvement, who have obvious troubles moving, or use canes or wheelchairs, have less of a credibility problem.

Neverthless, I've argued in the past that the Neuropathy Association, and others, could do a lot better job hitting the media about the condition. Ironically, people began to find out about the condition a little more recently, but only because the new drug Lyrica was the result of a heavy marketing campaign for a number of conditions, including neuropathy (remember the ads with little needles shown in a foot, asking if your feet feel like this?). It's sad when drug marketing, with all the sleaziness that can entail, is what people with a condition have to point to "prove" they actually have something going on.

I've also spoken about how a famous spokeperson with the disease could do wonders, as Michael J. Fox has done for Parkinson's, and Montel Williams/Annette Funicello/Teri Garr have done for MS. We've had our famous sufferers--Johnny Cash (autonomic), Mary Tyler Moore (diabetic), Andy Griffith (Guillain Barre), but most have been reluctant to talk about it, or talk more about the "originiating" condition (such as Ms. Moore for diabetes). We do have Sister Dolores Hart, but she's hardly a household name. And, despite the regard we hold them in, neither are Rose or Mrs. D or Wings. A number of us have been the subject of articles or interviews, including myself, but these tend to appear in specialty journals such as Neurology--it's not like being on the cover of Time.

Then again, though, we have to keep fighting. Sometinmes, for whatever reasons, these things reach a critical mass, and suddenly get a lot more attention. It happened for celiac, it may be happening for Lyme disease. So we have to keep speaking, writing, and demanding recognition.