I was hopeful that I would get a little more input. Anyone ?
Thanks

I'm pretty much like Wide-O and can't help much. My neuropathy is small fiber so my nerve conduction study was normal. What a smug face the dr had when he said it was not neuropathy. He would have been much more helpful if he had told me of small fiber then. I had to figre it out for myself. I would love to take my biopsy report and stick it in his face....I have 0 a and c fibers in my feet. I've had to be my own advocate and after seeing a foot dr for only 2 visits I asked for a skin punch biopsy and he was like sure....lol

So your diagnosis is large fiber neuropathy ? And you are trying to figure out what caused it ?

Sorry if I sound stupid...I've been up most of the night

The disabling part just started for me about a month after my chemo ended in March of this year so I only have about 6 months experience with this stuff.

Hope u get some good info from the good people on this site. I'll be keeping up with your posts and have u in my thoughts.

Take care of yourself.

Debi

I didn't reply at first because you said it didn't run in your family, my experience is with hereditary neuropathy, but since you are looking for more comments, I will contribute my experience.
Hereditary neuropathies can appear as spontaneous mutations, also some people develop symptoms only when much older, which may lead them to believe it is something else, so it can be in your family without being identified. . You can develop quite serious symptoms with CMT at any age. I was clumsy and uncoordinated as a child, with restless legs, numbness set in in my 30's, pain increasing severe through my 40's. my neurologist thought I was too young for the severity of symptoms I had and sent me to Johns Hopkins for a second opinion, EMG/ NCS showed severe large fiber with muscle deterioration, skin biopsy devoid of nerve fibers at ankle, reduced above knee, and deteriorating at upper thigh. That was several years ago and I was sent away for pain management as it will progress and there is no treatment. The neurologists were done with me.
I do have bilateral severe carpal tunnel, and my hands are numb for several hours when I wake up, I cannot hold a needle or pen until around ten. The burning comes and goes for me now, but I am on Gabapentin and MS Contin, so my pain is greatly reduced from where it was. My upper thighs are where the burning is most noticeable, but my legs are almost completely numb to that point.

It does sound as if you have some autonomic issues, but hereditary neuropathy while primarily sensory/motor can involve almost anything as it progresses.

Please do not allow anyone to convince you that this is all in your head, or spiritual. Do you recall Jesus ever telling someone he healed that it was all in their head? Honestly I do not know where these people come from. PN is a very idiosyncratic disease and the reason you are not getting more answers is probably because we all have slightly different symptoms, but you certainly do have company here.
Unfortunately, while there can be improvement with some cases making lifestyle changes and using supplements, it is not often a curable disease, unless you have a specific cause- toxicity, nerve entrapment, etc.

I seem to recall you took Cipro alot?

If so you may have fluoroquinolone toxicity. This is DNA damage.
So using some acetyl carnitine (up to 2 grams a day) may help.

Magnesium too, as it helps the mitochondria. Any form other than OXIDE type.

The CMT issue can be triggered in people we know now from one study of a man who was triggered by Levaquin. His CMT was asymptomatic before the drug was given. CMT websites have drugs lists to avoid... so they know that drugs can make CMT worse.

Quinolone damage may respond to glutathione treatments, and magnesium. Dr. Jay Cohen MD has mentioned that on his website.
Glutathione can be stimulated with the supplement NAC (n-acetyl cysteine). There are liposomal forms of glutathione now available...very expensive but if you are suffering, you could try one of those. That is the only type that is absorbed from oral use.

Susanne- thanks for sharing your story. It sound familiar. Its not often I hear of other pn'ers with burning in the thighs like me. Or muscle weakness, severe bi lateral carpel tunnel, etc. I'm leaning towards cmt lately. As a child I got frostbite super duper fast, and in my teens had a numb patch on my upper back and weird sensations in my thighs when I'd exercise-itchy and tingly.

Mrs d-yes, I have taken cipro a couple of times for bad uti's. Also been on macro bid about a dozen.
These familiar supplements sound worth an honest try. I took a bottle of L Carnitine and stopped because of the expense. How is toxin induced pn diagnosed?

Also, since my nerve conduction study showed abnormalities, does this mean it is large fibre? That's how they diagnosed carpel tunnel. I also have no ankle reflex and high arches.

I could be one of the lucky ones with large, small, and autonomic involvement. It sure feels that way. There's no symptom I don't have. Although the only numbness I have is in my hands in the morning if I don't wear my braces.
I'd hate to think that doctors are disregarding my complaints because of my age.

I'll keep watching the forums and try to use the info at my big appointment with the best neuro in Ottawa in December.

I'm wondering what the best way to get the point across to my pain doctor is that the pain is unbearable and really can be everywhere. He tells me to do Tai chi and reluctantly puts me on a low dose painkiller.

I found a great support group on Facebook, if anyone is interested. Its called " support for neuropathy "

Peace and kindness

Do a little Internet research on talking to doctors about pain. I got badly burned on here trying to patiently explain to someone that they needed not to come off as a drug seeking maniac, which was how they came across on the forum, so I will not give advice personally, but doctors basically need to be convinced that your quality of life is affected. If you can take a family member to back this point of view up, that is better. Doctors are in a tough spot, they are not supposed to allow pain to be undertreated as it leads to more pain and debility,sometimes even heart failure or suicide, on the other hand they are strongly discouraged from prescribing effective medications. It is a delicate balance and we have to be very careful, making it difficult to have a meaningful doctor patient relationship.

I also used cipro and Tricor ( for high trycgycerides) and noticed a worsening of symptoms after each. The cipro was for a foot infection which had progressed to an emergency before I even noticed it. My balance did improve somewhat when I got off the Tricor.

I have had very high arches and absent reflexes since childhood. My eldest son, who also has CMT, has these symptoms as well. He has weak ankles and walks on the insides of his feet. I tend to walk on the outsides. You have enough symptoms to suspect CMT and an abnormal EMG is one of the tests for large fiber neuropathy. As the large fibers weaken the muscles die back which is where the progression comes in. My arms and legs are much weaker and I am unable to move my toes or the front of my feet at all. Trying results in muscle spasms.

If they determine that it is CMT it gives you some closure, but rules out pursuing treatment, so presents a dilemma. Good luck with your appointment, you are doing the right thing by learning all that you can first. I hope you have a compassionate and open minded doctor who knows how to listen.