Experiencing/going through testing for long fiber neuropathy?

They didn't really give me any ideas. Someone said that claritin helps.

Hi @smithtn, I would like to add my welcome to Connect along with @marchelle and others. There is another discussion that has some references that might be helpful:
--- Small and Long Fiber Neuropathy – What's the difference?: https://connect.mayoclinic.org/discussion/small-and-long-fibre-neuropathy/.

There is no real cure for neuropathy but there are many different treatments for providing relief from the neuropathy symptoms. If you want to learn more about neuropathy, the following sites have a lot of good information.
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
--- Neuropathy Commons: https://neuropathycommons.org/.

You might also want to look through existing discussions in the Neuropathy Support Group to see if any might be helpful - https://connect.mayoclinic.org/group/neuropathy/

Do you mind sharing more about your symptoms and any treatments you've tried?

Treatment would be IVIG therapy or subcutaneous therapy. The doctors have to know the cause. If autoimmune then IVIG. If not autoimmune nothing can be done. Long fiber neuropathy does not regenerate. That’s what they teach you in anatomy and physiology in college. There is a lecture by Dr. Anna Oaklander that talks about neuropathy on YouTube. She is a research neurologist that started researching this back in 2016 maybe before that.

Thank you John for that information. I will certainly take advantage of it. A few of my symptoms of large fiber neuropathy at this time are balance issues( I cannot stand without holding on to something); if I stand in one place for too long my feet start to burn and it is hard to start walking on them; numbness in my feet and swelling if I do not wear support hose and my walking gate has changed. Of course there is that ever present fear of falling (mainly because I have and one time severely damaged my shoulder. I am beginning to experience funny sharp pains in my legs sporadically and wondering if it is when another nerve has shut down (will be seeing the doctor again this week for testing and will ask then). I am in the process of testing (extensive blood work and EMG and maybe more) and don't get results until end of November. Hoping by then there is an action plan to move forward. I will share this information. Am purchasing a carbon fiber rollator that weighs under 11 lbs so I can easily get it in and out of my car and continue an active life despite neuropathy.

Exercise is beneficial I have found. I have long fiber PN diagnosed as idiopathic. Although doctors don't know cause common sense tells me there is some cause. Except for this I would say my health is absolutely great at age 71. With daily exercise I have managed to stay very active in spite of "walking on rocks" sensation and stiffness and pressure in toes ankles and now up my shins. My balance while standing on one foot is only slightly off. There are things that help heal nerves even long fiber nerves. Keep moving all you can. Request physical therapy and continue it at home every day or even 2x a day I wish you the best!!

Thank you for your advise. I too feel I am in good health at 79 except for this diagnosis and am active. Hopefully at the end of November when all the tests are finished I will know the cause. Just from the blood draw they are checking for 13 different reasons. Will post my results after that appointment. Best of luck to you.

Did your symptoms come on abruptly or did they come very slowly? Mine came very slowly over a 10 yr period starting out with just a numb big toe for a year or 2 then bottom of feet feeling weird for about 2 years then top of foot then ankles etc. It seems it must be some type of missing nutrient the way it progressed but have not found a cause with numerous tests. Both legs are exactly the same so doctors say it is systemic rather than caused from my bk or other structural cause. All blood work is good except hyperthyroid which causes me no symptoms and normally only hypothyroid causes PN so does not seem to be linked. I sure hope you find a cause.

Two or so years, I felt down, in my butt, when take off the car done on the ground. After It kills me from my butt to next my back legs then took of my feeling on my right leg/foot. I now no-balance from my right leg._

Thankfully, they checked my right leg from my butt down to my feet. They found a

First, I have an accident and now have TBI. That accident hit my left side of my brain and moved to the right side with a lot probs. Nerve issue is there from my right bottom c lose to my butt. According, they can “fix” it… I’ll see soon when I go to another doctor that can move that nerve where it is.

My symptoms came on slowly. It started with the feeling there was a thread or string around my big toe. I had chemo about 15 years ago and somehow I got the impression that you either got neuropathy in your feet right away or it could start 10-15 years afterwards. My neurologist is not aware of this happening. He says my neuropathy is not from chemo or diabetes. I am a pre-diabetic. I am still in the testing stage --26 vials of blood sent off to have 13 tests performed by a couple well know medical facilities. Just completed today EMG testing for my upper body. Lower body was done a couple weeks ago. My legs are far worse than my arms. The end of November all the tests and blood work should be evaluated and at that appointment I hopefully will find out more, what I have, the known cause and what they can do about it to stop or slow down the progression. Will post a summary of that appt then.

Hope you find the cause. Best wishes.