Howdy gang, I'm just noticing this category for the first time.

I understand that chemotherapy-induced peripheral neuropathy (PN) isn't all that uncommon. However I've been diagnosed with what the neurologist calls Progressive Polyneuropathy (sensory only) and I only had surgery and radiation. This has been getting steadily worse for the last 18 months-2 years, beginning maybe 2 1/2 years after the end of rads. Initially, a year ago, he didn't find anything when he did the nerve conduction studies (NCS). Now, a month ago, he came up with a firm diagnosis. I also have Raynaud's Phenomenon, which is a kind of mysterious but not all that uncommon circulation issue. As far as western medicine goes at any event, the two aren't related.

Symptoms: numbness and tingling in both hands and numbness along the tops of my forearms which seems to be extending north. The tingling usually radiates up the arms and sometimes onto my back. Sometimes it's not too bad. But the numbness is constant and makes it very difficult to do small things - button buttons, turn pages, tie shoes, etc. etc. I make very certain I'm gripping things like glasses of water carefully so I don't drop them. And I do drop things if I'm not paying attention. There is no pain associated with it. I also note some of the same symptoms in my feet, but they're not as strong.

The neurologist says there's nothing he can give me since I'm not in pain. So I guess things like Gabapentin wouldn't do much for me. Since it's idiopathic he doesn't really have anything else to say about it.

Yesterday I went to an endocrinologist, and he thinks my thyroid functions look low and, after he gets blood work back, I'm assuming will likely up the Synthroid I take from its current 100 mcg. Beyond that I have no idea what he'll suggest. I also visited a rheumotologist, this for the Raynaud's, and he didn't have anything to offer on the PN.

Been doing acupuncture for the last couple of months on a what the hell basis. No change. Also am taking the various supplements that are recommended for nerve issues - there's a great neural issue web forum I discovered and the people there are very helpful, as everyone is here.

So: anybody identify with any of this? Any suggestions for what else I might consider? Oh, I did do some bio and neurofeedback over the summer, this for the Raynaud's, and didn't see any improvement.

Thanks, all.

I have neuropathy, there are 20 different types, most likely from chemo, CIPN, chemo induced peripheral neuropathy, but other factors are involved like underlying medical conditions making one susceptible sooner than later to neuropathy. Certain medications, like antibiotics can cause neuropathy, as well as surgery, radiation, being bed ridden, and don't know if the cause can ever really be determined. Mine was pretty bad causing paralysis of the leg, feet, toes, and took a long time to regain their use, and still have some paralysus to this date four years latet. I tried the various meds, Gabapentin, lyrica, which doesn't help much, the B vitamins, electrical stimulation to no avail. Did the tests only to show I have nerve disruption, so that was a waste. I just live with it now, 24/7, sometimes taking a pain pill to get to sleep. Certain weather like humidity, rain seems to aggravate it, and when I eat Chinese food or an occasional beer, it seems worse or is just a coincidence. I guess it's a hit or mis what therapies may work. Good luck.

Paul, thanks for your response and I'm sorry you're having to deal with this on top of all your other ailments. I do realize that PN can come from various sources. In addition to lots of B12 and some limited B6 I'm also taking L Carnitine and Alpha Lipoic Acid. Figure those can't hurt.

I'll let you know what the endocrine guy says after I get the blood results.

I took those too, vitamin C. See what works.

David, I had significant neuropathy problems. Numbness in big areas of the body until I had almost no feeling in half my torso and most of my lower body along with many months of tingling in the hands, feet, legs, face, neck.

I had lots of blood work and found almost no B-1 which can cause permanent nerve damage. I also used a blend of Chinese/Chiropractor. I call them neurological chiropractors and the technique they use is similar to acupressure only directed to specific nerve and muscle problems. I am still amazed they can isolate and eliminate almost any pain I have had this year. The technique is called Active Release Technique. You can google it and there is a find provider link.

Anyone with a lot of radiation can experience very random things that are often misdiagnosed primarily because no real studies have been done because of the random nature of late effects of radiation. I have had them chase my pituitary, thalamus, thyroid and even my testicles trying to chase hormone loop imbalances. If the nerve damage doesn't get you, the vascular restrictions and associated problems will.

Ed

Thanks, Ed. So sorry to read about everything you're going through. As with Paul, you surely don't deserve it.

It happens that the acupuncturist I've been going to (with no results so far I might add) is also a chiropractor and is on the list of those who practice the Active Release Technique here in LA. I'll ask her about it when I go in on Friday, and in fact she mentioned today that she was interested in trying some chiropractic on me then. I've always kind of resisted chiro for various reasons. But I'm willing to give it a shot. Unlike you I don't have any pain associated with my PN. We shall see!

I appreciate your taking the time to write.

Thank you David.

I am surprised she hasn't mentioned ART to you. I am curious if your scalenes are bound up too. That would explain the tingling and maybe numbness. I was diagnosed with polyneuropathies in 2009 or so.

I don't go to Chirpractors that like to adjust bones and joints. ART is based more on muscle work to free up joints. Different way to look at it.

Good luck and let us know how the treatment is on Friday. She should go right to the neck and feel problems.

Ed

Sorry to hear about your polyneuropathy problems. As Paul has mentioned Neuropathy is varied, mine is due to Protease Inhibitors (namely Reyataz/atazanavir). I mention this because I seem to remember some time ago about a treatment for neuropathy associated with HIV+. I couldn't take it for reasons I cannot recall at the moment. Perhaps a little investigation may shed some light. I do not think that it worked like lyrica or gabapentin. Just a shot in the dark. Perhaps it may have an active ingredient that may help you.( Long shot) And Hello Ed and Paul

Hi Shawn. Hope you enjoyed the holidays as best you can.

Hello Shawn!

Well, final verdict on about 3 months of once/twice a week acupuncture: zip, zero, zilch. Nice people who mean well but the end result has me feeling no differently from when I started.

Back to the drawing board

(and Ed, I'll look into the ART process after the holidays)

Sorry you didn't get good results. Don't get discouraged and please don't give up. I hope you achieve some success with ART. I have even learned how to treat specific neuropathies when working out based on the ART principles. Ironically I found a workout recovery product that has completely eliminated all the weakened muscle burn after workouts and almost all neuropathies. I even take half a dose when I'm not working out.

Feel free to message me if you need any help selecting a provider. There are little icons next to the provider that shows what certifications they have. Look specific for areas of concern in your body. I know hands, feet, etc., are shown. With complete certification I believe there are 700 specific treatments but I'm not sure which ones are specific to nerves vs muscles.

Also, City of Hope has been really going after STAR certification for aftercare which helps assemble a multidisciplinary team designed to specifically address after treatment issues. Your issues should fall under that.

Good luck David!

Ed

Thanks, Ed. I really appreciate your support and advice.