Message from Lailavia.

This post originally appeared in Autoimmune disorders

http://neurotalk.psychcentral.com/sh...ad.php?t=22222

then in spinal disorders

http://neurotalk.psychcentral.com/sh...ad.php?t=22224

but lailavia asked that it also appear here, because the neurologist mentioned PN.

Advice happily accepted.

Hi Supernova:

You are going through hell with all your symptoms, pain, etc. I bet you are as confused as hell, and now you might even have PN. Oh brother.

I can only tell you what helped my husband Alan. Five years ago he was in so much pain due to his PN that they put him on the Fentanyl Pain Patch. He actually went up to 125 of the patch, and many cancer sufferers go to 100. Just imagine, He was on 125 of the fentanyl. My girlfriend Elaine, who has stage 3 lung cancer is on a 25 patch. Just goes to show you how horrible some PN pain can be, right?

Well, one day, a few years ago, I was looking at these forums and I happened upon a doctor called a chiropractic/neurologist. There are not that many world wide. It's a special field. It's chiropractic and the doctor take 3 years of neurology. So he knows all about nerves and things that a neuro would know, but he also knows THE WHOLE BODY. And how it should be funcitoning.

Well, you should see my husband today. He went in there weighing 275 lbs, all stiff like a board, (he never exercised), he couldn't bend in any direction, his PN was horrible. The first exam is over 3 hours. The guys runs every test in the book on you. Then Alan went (at first) 3 times a week. His doctor used a device known as a G5 machine. Alan says if he could buy one tomorrow and have it in the house, he would, that's how good it makes him feel.

Alan then went from 3 times a week, to once a week, and over the years, he goes maybe once every 2 months. He owes this particular doctor his life. That's how we look at it.

Oh, and soon after he went to the chiropractic/neurologist, he was able to wean himself off the fentanyl patch. You have to do it in stages BUT HE DID IT. Now I'm not sure where you live, but just google chiropractic/neurologist in your area and hopefully you can find one. I don't know if he/she will accept your insurance. But let me tell you one thing, this is the best thing that Alan could have ever done.

He is presently taking IVIG therapy. But he doesn't use any pain meds.

And the best thing is that after going to the chiropractic/neurologist, he lost 75 lbs, and joined a gym. Excercise really helps (that is if you are able to do this). But first you have to find the right doctor.

Now since everybody you have seen is not doing you any good whatsoever, you really have nothing to lose. Why not give it a try. If they can help you, isn't it worth looking into??

Let us know how you do, okay?

Melody

Thanks for the reply, Supernova actually put that post there for me, Lailavia, after I had a big rant/vent in the autoimmune fourm. I am just tired of playing ring around the rosy with docs.

My big question now is , can PN (hich I have PN like sx in my feet, tinglies, cant stand shoes, feelings of warmth, pain, etc) spread up into your body to cause fatigue/weakness in arms, it could be in my legs...just harder to tell cause I always have had pain in legs from my fibro, and now have disc disease and thigh pain. My new spine/pain doc gave me the advice today ( I went for my first epidural shot) that it seems muscular and I should consult with my rheumy re: muscle biopsy. I am just jumping form one dx to the next. I recently had the emg,ncs on my arms which were fine, and doppler studies on main arteries,,,,he was sooooooooo nice to me! Some docs are real and nice. My hands are getting tired from this typing . Tested for Myasthenis gravis, just about tested for all of it...This neuro did test me. But isn't there still muscle biopsy and spinal tap> oh crap I feel like a medical freak/mystery.

Thanks for the helpful info Melody I need all the help I can get! Glad you can still dance!

--with so many nerve symptoms is that they may have many different causes.

For instance, sensory and motor symptoms may stem from problems with the brain, the spinal cord, or the peripheral nerves, and the symptoms may be exactly the same. And--the number of conditions that cause nerve damage that feels similar are legion.

This is why the testing for such symptoms is often a long, expensive process of elimination.

This is part of the reason I highly recommend the spreadsheets at www.lizajane.org to list and track tests. The charts are about as comprehensive as is possible regarding tests for neural symptoms, and many of the tests can shed light on a large range of other possible conditions (hormonal disregulation, metabolic disorder, circulatory problem--in short, anything that might affect nerves) as well.

Hi Lailavia,
The best doc for the job is a neuro that specializes in Neuropathy, as previously explained there are many reasons why the nerves get damaged and having the best working for you will give you the best chance of finding the cause because they will do all the tests that are necessary to hopefully find a reason why this is happening to you.
Perhaps if you mention what area you live in, someone here might be able to recommend a neuropathy specialist close to your neck of the woods.
good luck
Brian

Very good comment Brian:

Lailavia: The only good doctor is a doctor who, besides listening to you and paying attention to your symptoms, works WITH you, respect you, and doesn't brush you off because he can no longer help you. And if a doctor can no longer help you, I think he should recommend someone who can help you.

There are plenty of good doctors out there. Plenty. The thing is to locate them, get an appointment, and do what he says to do. If he says to lose weight, then we lose weight, if he says to exercise, (that it will be beneficial), then we don't say, with a groan "oh, I'm too old to exercise". If Alan said that, believe me, he wouldnt' be where he is today, 75 lbs lighter and development some muscles. If Alan had not gotten that foot ulcer, he'd still be at the gym 3 times a week working out like Rocky Balboa. So he got sidetracked. Now that he has the shoe, once the ulcer heals, you'd better believe that he'll do all he can do to fight this neuropathy.

In his words "when I exercise, go to the gym 3 times a week, I have no pain".

I find that absolutely remarkable coming from a man who used to weight 275 lbs and wore a fentanyl patch. And of course I know that many people with various degrees and various kinds of neuropathies cannot go to the gym. Each person is different with their various diagnoses. Sometimes, the only thing a person can do is find the right med that works for them.

But Alan was a very lucky man. He found Dr. Theirl and he LISTENED. He listened to Dr. Theirl talk about the whole body, the way it works, the nerves, the muscles, how important exercise is. So when Alan used to have a bad day (with his ulcer), we would lie on the bed and just do simple stretching exercise. I mean, any form of movement is good for him.

He is (as a norm), a couch potato. He can't go for walks because he has to keep the pressure off of his foot. I wonder though, now that he has the oft loading shoe, can he go for simple walks, like 5 blocks or so??? He forgot to ask his podiatrist. It's much easier to sit in a chair and watch tv, then it is to get on a bike and pedal away. I understand this. It's all in the motivation.

As he puts it, "when you have a stress test, and you are told you have a blockage, and you have an angiogram, and then you have angioplasty, and you have to take plavix, aspirin and metoprolol for the rest of your life, and the doctor says "no salt, exercise", well that did it for Alan. He listened, he did what he was told was necessary, and guess what??? It actually helped his neuropathy!! I wouldn't have believed that this is the same man who laid on the bed 4 years ago screaming in such pain that I had to slap another fentanyl pain patch on him (he already was on a 50 and we had a box of 25's in the house). I didn't know what to do. I took another patch, (didn't give a second thought because he was screaming his head off, because I had inadvertently put capsaicin creme on his toes and he had a scratch and we didn't know it). Well, forget about it!!! He went nuts. It was 2 a.m. and he was screaming, and there I was with cold packs and cold towels, washing off the capsaicin and nothing worked. All I could think of was getting another patch. I did and in 2 seconds he just said 'Whoa". I will never forget that night. A stupid 25 patch, added to the 50, and his pain went from a 10 to a 0. I was never so frightened. Then we found out that if you have a scratch (and his feet are numb, so he didn't know he had a scratch), that the capsaicin is hot pepper stuff, and it burned him. It really really burned him. We never went near that stuff again. And from that night on, he wore socks to bed so his nails on one foot wouldn't scratch the other foot.

He then went to blue stuff and it worked for a while (funny though, I have a cousin with severe neuropathy from a spinal tumor, and she put blue stuff and it burned her like crazy. She won't go near it. How the hell can blue stuff burn you?? Never understood that. She also tried Bio-freeze and it burned her too. Wow, all the various ways neuropathy reacts to the cremes

Anyway, sorry for the long post

The best of luck in finding the right doctor!!!

Melody

I guess I'm in such a fog, but my main question is...can neuropathy be felt as only pain and fatigue, weakness,, with out the tinglies, numbess, etc? I have the sort of numby tingly stuff in feet....but my arms just plain fatige and weakness.....wondering if I should try straight for a specialist or see Dr. W. my current neuro one more time...I don't like the hospitals he works at, I may switch to next county to go to the one I like. Same distance. I live in the Dc metro area near Annapolis.....if anyone knows anyone. I have to go look at my "referral" book anyway. I am just confused if I should see neuro or rheumy or both. To tell truth this rheumy has done all the basic rheumy type bloodwork so I think he will just say its fibro....but its way different and intense...he did refer me to a physiatrist for my leg, I chose the spine specialist cause seemed safer...getting a needle poked in there I wanted to be safe....this doc was an anesthesiologist. Yet the other one seemed good from his online description. OH I pray I get the SSDI so I can keep going to these docs. My grandpa did have ALS but non of my sx point that way thank God,. any way I am rambling I need to do some imp paperwork. Bye and thanks for now. That chart is a good idea. I have folders galore....I like to be organized...

There are neuorpathies primarily of the larger sensory nerves that handle vibration, mechanical touch, and body postion that cause lack of sensation and balance disturbances, in addition to sensory disruption that might be felt as tingles or erroenous sensations. And--there are neuropathies that are primarily motor in nature, with few or even no sensory symptoms, that may well be felt as movement disruptions or fatigue, as the body has to work much harder to move properly as muscle becomes de-enervated.

See:

http://www.neuro.wustl.edu/neuromusc...nimax.html#lmn

http://www.neuro.wustl.edu/neuromusc...imdem.html#mmn

http://www.neuro.wustl.edu/neuromusc...mdem.html#cidp

I did make one more appt. with my current neuro, I will not flip out in his office I promise, but I will have some info and if he doesn't want to help its moving on time. Thank you very much.

Laila

Make sure you come back and let us know the outcome anyway, good luck and just think what that doc would do if the shoe was on the other foot