But it was a Goodie!
Since I have "axonal sensory polyneuropathy of length-dependant nature" and my Skin Punch (Dr Griffin - Johns Hopkins) came up with small fiber neuropathy that is still producing growth (albeit slower than the PN destruction and progression)- this post was 'up my alley' & peaked my interest.
Thank you, Glenn.
Your interest, and wealth of knowledge - once again - has
me in awe & wonder.

Thanks to all of you for your very helpful input. Don't know what I would have done without you guys for the past few years. I do know I make some of you laugh so that's my way of saying Thanks.

I am reading all your posts about axonal and small fibers and I'm imaging Alan sitting at the computer saying "what on earth are these people talking about".

this is the kind of guy Alan is. If he presses the wrong button on the remote, and the tv screen goes blue, Alan will start screaming "Melody, the cable's out, do something".

So what do I always do??? I simply walk over to him, grab the remote, press one button. and VOILA!!!, there's his picture. Then he will say "my god, what would I do without you".

INDEED!!!!!

Once he dropped the Direct tv remote. The whole thing came apart, the insides, the sensor pad, EVERYTHING!!! I put it back together in 5 minutes. then wrapped it in scotch tape so he couldn't break it again.

He stared at me .....EXTREMELY IMPRESSED!!!

Glad I'm good for something.....

lol,

I guess, inflate your ego, but that was TOTALLY concise!

Just a couple of hours ago, I was 'cruising' the NIH clinical trials for 'neuroathy'...There were LOTS-tho mostly about chemo-neuropathies, diabetic and HIV. Many were in relation to new drugs and amino-acids and various protiens resulting in certain amino and other component actions/reactions. Compared to a year ago, when there were 50-75 trials, there were MORE. PN in and of itself, may be a step-child or a parasite interms of research, but, IF we get any results I will take advantage of that status!

Steve: Do you think you can find that research/report again? I hope it's not one I've seen before?

Lastly MELODY: Only you and Alan have to decide what 'feels right' about all that's been going on and anything in the future. You both know too many here who have slogged thru the quicksand of diagnosis? If your doc doesn't pull the 'trust me, ONLY' routine and there's a give and take of communications, well maybe count blessings and go on to the varied approaches to pain relief....that's what it really IS all about, isn't it?

Hugs and fuzzies! - j

Oh absolutely (about the pain relief). But my husband is very very stubbon on one thing. He won't take a pain pill ever again (by that I mean vicodin, fentanyl patch). He might take a tylenol (but that doesn't do anything for the buzzing stabbing and pins and needles) and those are his main symptoms.

I did speak to him about trying Lyrica. I told him that many of you guys on the boards have tried it and sometimes it works. I told him that when you guys might have had a bad side effect from neurontin, that it didn't stop you from at least giving lyrica a whirl. So he will at least consider it.

Now he did try requip. While it did quiet the pins and needles it didn't make him drowsy enough for sleep, so he went back to the xanax (and of course my massaging his calves (oddly enough I didn't have to last night). He must hve been so tired, he just took a xanax and had a good sleep.

He won't consider the opiates any more (of course, if god forbid something happens and he has no choice, well, he'll have no choice) but if he has a choice, he won't go there anymore because of what he had to go through to get off the fenanyl. He had to detox for 5 days and it was a nightmare but he got through it. Or should I say "we got through it, with lots of chicken soup and me leaving him alone in the bedroom so he could "withdraw".

He had gone to a detox program in the hospital (approved by his insurance). They gave him a drug test (but the results didn't come in till the next morning). He even had to explain to the lady doing the test that he was wearing a fentany patch because she didn't know what fentanyl was (go figure!!!!!!).

So he had one night of withdrawl (with all the other people de-toxing from booze and cigarettes and drugs). The next day, the supevisor came over to Alan and said "we did not detect drugs in your system so you can't stay here". Alan showed them the patch he pulled off the previous day and said "what the hell do you think this is"????.

It seems there is a separate test given for fentanyl (at least that is what they told him). So he came home after one day and de-toxed on his home at home. He says he never wants to go through that again.

So we do massages and he goes to the gym. Works for him (at least for now.)

love you guys!!!

--tributes line forms to the right.

Seriously, I have recently been giving the subject a lot more thought myself, due to the muscle tear in my right shoulder area (which is still being most recalcitrant--I seem to slightly re-injure it on a regular basis just trying to move in my usual way). The most frightening symptom of this has been the tingly/slightly novacained, occassionally virbational feeling in the webbing of my right hand between thumb and forefinger, extending into the palm below the webbing, up the inside of the right thumb and forefinger, and extending across the back of the forefinger/middle finger knuckles and down the back of the palm, with the "abnormal" sensations petering out by the wrist. The distribution is pretty obviously medial nerve, and the symptoms compressional (they did happen right after the tear). The question is, where is the medial distribution being impinged--given the extent of my tear: trapezius and rhomboid muscles--and muscle pain referred down my right arm, there could be a radiculopathy (nerve root compression near the spine), compression at the brachial plexus/thoracic outlet, or even in the upper arm, or at more than one place.

The thing is, these symptoms have been SO very different from my "normal" neuropathy symptoms it's pretty obvious that it's a quite different process, at least in me.

I am actually going to get functional--standing/weight-bearing--MRI's of the cervical and thoracic spine next week to check for gross spinal/nerve root abnormalities, and Dr. Chin at Cornell Weill is having me come in for an EMG/NCV of both arms after that if we don't find an obvious problem on the MRI's. (He supervises part of the clinical practicum in nerve conduction studies there, and he was laughing at the thought of throwing me at some of his students. I promised him I'd be gentle.)

I'd gotten involved A Good Deal w/a Horse. My Horse -one w/lots of large and small fibre muscle and tendon injuries. I learned more there than I could ever learn about PEOPLE on the web. I also had great vets and vet techs who put it in the ENGLISH language. Frankly, large animal muscles are on a well, bigger scale than people, but what the large animal folks were doing was being downgraded to small animals - pets...cats, dogs, whatevers.

With animals, and I suspect your shoulder, well, It's like my wrist after PN onset - a series of small fiber tears at probably critical junctions. Not carpal- been there.. It is just damage - gotta work around it, but well, properly, any gentle, lo impact ways to build/re-build the strength lost. With out the accumulation of extra scar-tissue. Believe me finding the right therapists is an ART/skill/Luck of the draw! Me? I got lucky? But, damage done, is that, damage done - my one wrist from the post onset attempts at functioning in life is damaged to the point it is about 1/3rd less in muscle mass or tone than the other. I keep doing the x-ercises and hoping, but, well, like PN am not expecting miracles? Muscle damage/dies? Nerve damage/Dies? Do these guys know? Nope. Ask a vet about a competitive animal - you mite get a lot. This is life as we know it? Well, we roll along, w/what we have.

As for Spine/Thoracic aspects -well I, for one won't even THINK in that quarter. After all - you are too nice a person! Ain't allowed!

Mel: Well, you know where you gotta go to do whatever's you need. I just cross my fingers [toes don't work!] that it all works RIGHT?! - j

Hi Liza Jane, if you ever come accross that article about what happens to ideopathic pn cases long term, I would be very interested in reading it. I am also in the same boat. Thanks.

--I had in my archives:

http://archneur.ama-assn.org/cgi/con...tract/56/5/540

It is a little bit older, but it's probably been cited more than any other study, in that it indicates the unlikelihood of losing ambulation.

Here's another paper on the subject, concentrating on elderly patients:

http://www.jabfm.org/cgi/content/full/17/5/309


I'll look for some others.

Thanks Glenn! I like the conclusions in the first study much better than the second...ha ha

for posting the link. Can you put them in the stickies? I was thinking, the article in the family medicine journal on the algorithm for diagnosing pn might also belong there. Another class.