Ideopathic Neuropathy - Doesn't all neuropathies have a cause?

@cax75 Idiopathic literally means "of unknown cause or origin". Of course, every disease or illness has a cause, but the real problem is that medicine and research are not advanced enough to determine the cause for every one of the thousands of conditions we know about. Then comes the realization that knowing the cause doesn't translate directly to knowing the treatment or the cure.

So what, as patients and practitioners do we do?
We look for known causes using our medical history, examination and testing. If the cause isn't identified, the condition is labeled "idiopathic ".
The practitioners use established protocols, based on best current knowledge and their experience, to try treatments, from most likely to more experimental ones, hoping one alleviates symptoms.
And all the while, in the background, medical research continues, looking for clues, causes and cures.
For example, I have had asthma for many years, most of that time it was poorly controlled because the side effects of the inhalers and nebulizer bothered me so much that I only used them when desperate. 3 years ago, a COPD drug was being tried for asthma, and that inhaler changed my life. They still can't cure asthma without a lung transplant, and they still don't know exactly what causes it, but I have my life back!

Have you found any treatment that helps your neuropathy?

@cax75 In 2021 I was diagnosed with small nerve fibers neuropathy, Ideopathic and non length dependent. I went to a lab and they took 20 tubes of blood that day and found nothing. They checked a lot of things. Heavy metals was one. They checked me for auto immune diseases. When I researched this I thought to myself if I had an autoimmune disease I would know it. But after reading I discovered you can have an auto immune disease and not know it. I woke up two days after retiring from nursing and I had full onset of pin pricks head to toe and in my eyes. Going off constantly. After a two month wait I got to see a neurologist and The first question I asked was how many of your patients in your entire career wake up with full onset pin pricks. His response was none it’s rare. No one in my family had anything like this. I had two Covid shots in Jan. Of 2021 and I was in the 6 week time frame for having a reaction. It will be years before they come up with answers to that. Did they ever do BLOOD WORK on you? I also had the skin biopsy and it showed the small nerve fiber. I take alpha lipoic acid and it has helped me a lot. I still get them wherever they decide to go off on me. But not like 24-7 constantly anymore. It is sometimes difficult to find answers how well I know. I wish you luck. @rnlorena

Thank you so much for replying to my post. Sounds like you have been through a lot with a little results from lipoic acid. I did have many blood tests as well and they considered Lyme disease for a while still inconclusive. Your pinpricks all the time must be impossible My problem is that my toes have a mind of their own and cause imbalance when I walk and pain after just a few minutes of standing or walking. I saw a video on YouTube concerning the difficulties of trying to find causes for peripheral neuropathy and therefore the idiopathic diagnosis. She said that there is no such thing as idiopathic. In Latin it means an idiot. She is in Boston and I am in Plymouth and I'm trying to get an appointment to see her. She developed a list of tests that doctors should use to try and rule out certain causes. This was 7 years ago and the list is being used today I believe. The doctor is Dr Oberlander. I will give you more information as I go back and find it and forward as I see her.
Thanks so much for sharing. I can wish you good luck and hope that the pinpricks are gone.

Hello cax,
as for the causes of neuropathy, about 30% of people with the condition have what's called Idiopathic Neuropathy which means a neuropathy without any medically identified causes. In addition, you can search everywhere on the internet and you will find out that the mentioned causes are purely theoretical which means a possibility. Even diabetes if well managed and controlled, will not lead to neuropathy since not all diabetics develop the condition. Neuropathy is nothing new and if all its causes are known by the medical field or body, why aren't there any cures. In fact, there are really no cures for neuropathy and there was an open discussion on that very subject. All treatments, therapies, and everything else used to deal with neuropathy in one way or the other, are aimed at slowing down its progression and helping people with it cope as best as they can. One person saw online that Johns Hopkins Hospital found a cure and I replied to the person that if you do a search with the words Johns Hopkins cure for neuropathy, you will find out that even Johns Hopkins says there is no cure for it.
Take care and best of luck,
gus

@cax75 @gus0557 Gus you are right, no cure. After being diagnosed in 2015 with PN, I spent about 5 years exploring many theories trying to find a cause. I figured from a logical point of view; find the cause and that would point towards a cure. I managed to get an appointment with Mayo in MN in early 2020 and spent 4 days in and of testing. They told me what I have but not sure why. This was a jaw dropper for me. Isn't it my back? How about the meds I take? No and no. So, I figured if they can't figure it out, nobody will. We live with the unknown cause, and I suppose you could guess at 100 different reasons we get PN. For me, I stopped looking in the rear-view mirror as to how did I get PN and concentrate more on the road ahead.
Ed

Hi Ed,
I've learned fast not to look backwards as looking backwards changes nothing. if you think about it, there are so many things that happen not only in the medical field but all around us that may or may not have a cause which we will never know no matter how hard we try.
In our case, even looking forward is of no use. Yesterday is history and tomorrow is an unknown future. All we really have is today and the moment we're in today. We have to acquire and learn how to cope not with neuropathy per say, but with our own respective symptoms of neuropathy as each one of us develops different symptoms depending on the makeup of our respective bodies. But the most difficult part is the psychological battle where one hopes one is surrounded by a loving and supporting group of family and friends. I am saying this as I am dealing with everything all alone.
I think we all should focus on today's coping with symptoms and leave yesterday and tomorrow alone.
Take care,
gus

@gus0557 - Gus, you made some very strong and valid points. I guess my looking back scenario was to stop looking for a cause and like you, I do what I can today, tomorrow could be different. PN impacts us differently, for me, numbness, poor balance and fortunately, no pain. However, the balance is 3 times worse as it was 5 years ago. I am fortunate to have several adult children all in their 40's and they help me when and where they can. But, in my case, there really isn't much they can do with everyday living. Like you, we are sort of on our own and need to adjust how we do things as PN progresses. My primary goal is to be safe, and I take many precautions. Best to you. Ed

I've been dealing with idiopathic poly neuropathy in my feet for 10 years now. I've had all the tests done several times over by multiple doctors, blood tests, EMG's, biopsies, everything, and the results were all the same.
No cause could be determined, lucky us. We're part of the 40% of patients that my GP told me never get a diagnosis for their neuropathy. He even jokingly said it's called "idiopathic" because they're idiots for not finding the cause of our condition.

@cax75. Actually the alpha lipoic acid works well. It took away the 24/7 pinpricks but I do still get them. They come and go as they please. As far as the Dr. could you have meant Dr Anne Louise Oaklander? She is at Mass General Brigham. Please look her up and read about her. She has a lot of stuff next to her name. I am thinking a couple of years ago I saw her giving a speech on the internet. We have to be our own advocates. I am a determined woman let me tell you. You know and I know it is sometimes difficult to get answers but we need to not let that stop us. I am not going to let that stop me. I wish you good luck in all your endeavors! Comeback and let us know how you are doing.

Hi Ed,
Thank you for your reply.
I am a little over a year with neuropathy since initial onset and with the tingling and numbness, I have crossed into the pain and loss of balance territories. The pain in the sole of my feet gets to the point where I cannot step on them. And I am not only dealing with my condition but with many other things including othere medical issues where I find myself now not even caring about whatever happens. Whatever is meant to happen shall happen. You can call me a fatalist. There is so much a person can handle on their own.
I wish you the best always and I thank GOD for putting this group on my path to have a sounding board at least.
Take care and thanks for being in touch.
Have a serene rest of your week