What to do in the meantime about wasting muscles and nerve pain?
 

I'm still undiagnosed for all practical purposes, so maybe I don't have PN but something else, maybe TOS.

Anyway: before my appointment with the neurologists at the university hospital here, which is due in 10 days, I wonder what I can do about my symptoms.

Those are: severe muscle wasting in both hands up to the elbows, cannot lift both thumbs, and pain, sometimes from stretching nerves (how to describe it? The nerves are just stretching and my fingers are moving involuntarily, or maybe nerves + tendons are doing it? Anyway, it's painful and scary. Those are not fasciculations, it's just something flexing and expanding under my skin. Not all the time, gratefully, but often enough to be scary. And another kind of pain, I believe muscle pain.

I take B12 methyl form, B1 300 mg, B complex and magnesium 120 mg (L-aspartate hydrochloride).

How to stop my hands from wasting? I believe I should be in a hospital now, it was just difficult to get that appointment.

With just ten days until appt, try not to do anything that would muddy the water(so to speak). That would mean new meds, chiropractic, accupuncture,etc. All I have as a suggestion is to drink lots of water. At one point, that helped me as I never had hydrated to the extent that is recommended. As for excercise, 10 days will not worth hurting yourself trying to build muscles that are not going to respond. I had large muscle wasting in the legs and buttocks. The wasting continued until it stopped and then slowly, repeat slowly began to reverse. You will have to be the judge of how much and what kind of excercise you need to do in the meantime. Stopping the wasting may be a function of things other than excersise. I hope that your appt can find an underlying condition and speed you toward treatment. I remember the need for speed as you see yourself growing worse and the worry that your world is crumbling. You are on the right track with the supplements and please continue to study about mitochondrial health as many people become aware that recovery may be in their own hands. Good luck Ken in Texas.

Thanks. What did you do for the muscle wasting to stop? The only thing I will do now is to see a hand specialist, but I would like to hear from you how your muscle wasting stopped. And how it reversed. It sounds like a miracle, and I may be in need of a miracle. As for the mitochondrial side of things, I've read here people take something for it (CoQ10, acetyl L carnitine), have you taken any of these?

18 months later does not sound so miraculous to me.I read on this forum and are still taking about 7 or 8 supplements. Including those you mentioned plus,B-12 injections and oral Foltanks that has methyl-b-12 and Folic acid included. Magnesium, Benfolamine,vitamin D-3,Vitamin B-1, and Fish oil. I have recently dropped the Bentfolamine as I was afraid of duplication after starting the Foltanks. I went to a Chiropractor who convinced me about the practice of excercising to tolerance.If your blood has the right (stuff) and you call on that unreponsive muscle, it will try to fire the nerve. This will speed the rewiring or repair that brings strength. I have been to two Neurologists and was told to go home and lose weight. Even the Mayo clinic says that if you have an underlying or pre-existing condition to treat that and that is the best you can do for yourself. I had Diabetes and then had a car-wreck. So, prepare yourself for a long road of discovery and try not to despair. I was in such a panic early-on that I tried all that I could try. Since, I have a journal and write down symptoms before trying new things. This way I discovered that Gabapentine was not helping me. I don't know your symptoms except for the wasting, I had wasting plus the burning zapping,sensitive skin,etc. So to restate, don,t do anything that will confuse you or the Neurologist for 8 or 9 days. Write down questions that you absolutely want answers to because getting a Neuro that will take the time to tell you anything is rare. Wish you luck and answeres, Ken in Texas.

Trying to understand this Ken.
Is it the despair and not being able to REALLY help most neurological patients?
Is it the bookworm, brainy person that becomes the Neurologist?
Is it just that it is all about the money, tests, and getting folks in and out?

Please advise.

Anyone to chime in?

I can only guess but I don't believe they(Neuro) despair and keep their mouth shut. Yes they may breathe different air than the rest of us(brainy) and yes the waiting lists are long and time is money. I think that "What we have here is a failure to communicate". For example at my last GP visit he handed me papers that usually have side effects of drugs,etc. I usually don't pay much attention.(My fault0 bUT IN THE PAPERS WERE SCATTERED REFERENCES TO PERONEAL,mULTIFOCAL pOLYNEUROPATHY. sOMEONE HAS BEEN TALKING TO SOMEONE. And it has not been me. I am trying to remember these words while fighting w/ the caps lock so this may or not be my diagnosis. But other than taking Draconian measures(hiring muscle) I feel that everyone is talking behind my back and I want in on the conversation. As another poster stated," So What?" Lets suppose you get lucky and have a good long revealing talk w/ the person who knows. Your treatment will only vary from mine according to what your blood tests dictate. If I am off track somebody set me straight. Stem Cell research, P-10 Knockdown, all are still in rats and mice. I may be feeling left out but I continue to feel better,better balance, am able to get up from toilet,(wooo-hooo). The shower may hurt but not so afraid of falling as before. Baba, I am not lumping all Neuro's into a bunch, just mine. Plus I will get my explanation, oh yes, I see my GP in three months. I wish you luck, Ken in Texas. P.S. 24hrs now without Hydrocodone 10-325, can you TELL!!!! but"that" they say is another story.

Thanks Ken!
 

I have sensorimotor polyneuropathy. What used to be symptoms primarily in my left foot/lower leg is now in the other foot/leg and I am seeing mild wasting in the pad of my left palm. Left forearm is also smaller. I have burning/achey pain here. No one has any idea. Idiopathic is a term they easily throw around, but there has to be a root cause. One neuro says it's got to be autoimmune, because of my strong family history. But my blood work doesn't support it. The rheumatologist I saw was pretty thorough with the tests.

I'm happy to hear you've made progress. That is my plan...change my diet, take supplements, do PT & light exercise. I've got 20 or 30 lbs to lose. I just don't see that the doctors can help me, I feel so dejected when I leave those appointments. Money out the window and no further plan except go on pain meds. Which I am still holding off on, being stubborn.

Something helped me a bit. Maybe those supplements, or maybe antibiotics I took for chest infection, they would have helped if there was an inflammation. I'm also eating abnormal amounts of cashews and dried prunes, in case I need more copper.. Anyway, the pain and the strange sensations have almost completely went away.

There is a goodly amount of magnesium in those nuts and prunes, BTW.;)

Good news mrsD! Because I don't know how my stomach will "thank" me for all those supplements :(