Alan Is Seeing Pn Specialists!!!
 

Hi All.

Done deal.

Today we made the appointment for November 20. I spoke to the people at the Peripheral Neuropathy At Methodist.

There will be two doctors seeing Alan. They specialize in Peripheral Neuropath. I was told to bring all his films, blood work (thankfully, I've documented everything).

The will, obviously, do more tests, a new emg, WHATEVER?

So we shall see where this road leads.

Just wanted to update you.

bye for now.

If you don't have the films in hand...
 

Expect or plan to take a Patience Pill till you get them! But, they save soo much time and extra testing in the end!

Good luck and heaps of hope? Hugs etc - j

I already have the films
 

I got them last week before we went to the Neurosurgeon so there's nothing except when he goes for a blood test tomorrow morning, I'll get a copy of the results, and then we'll have absolutely all latest blood work, (unless they want to test for something unusual).

I don't doubt that they'll want to do another emg or nerve conduction or whatever. Also, I hope they give him a test to see how the circulation is in his legs. It's a PN department so they should really be thorough, right?

If not, well they'll just have to deal with ME!!!!

will update.

bye for now.
melody

charts
 

Melody,

If you haven't used the lizajane charts before, this is the time. If you go to the doctor's office prepared with a clear outline, and time line, it will be immeasurably helpful.

http://www.lizajane.org


I know it can be a lot of work to start using them, but once you start, they direct themselves. Again, we've yet to have had a negative response from a doctor.

However, I do know that you have ample to do, what with massaging Alan's legs (does he ever loan you out?), making him his favorite patatas, and spending your tiny amount of leisure time at those X-rated clubs at Second Life! :)

You know I have a vested interested in how things go for you there, as Methodist is very close to my home. I also hear they have a back pain service, and I think that's where I belong at this point.

Good luck!

Hi Liza jane:

I printed out the medications page. That one I can fill out.
But I have all the reports and all his blood tests and to be honest, I know they will be ordering new tests. And he goes for new blood work tomorrow.

When he gets that blood test back, I will definitely try and fill in the stuff on your blood test page.

But I don't think I can do the stuff you guys do with the charts. Don't think my brain can function that well. I took one look at the charts and said "oh my, these guys do these things??" I can only imagine Alan taking a look at them. He can barely use the remote for the cable tv.

But thankfully, I have all films, all reports (his last compete work up was 3 years ago) so I know they'll order all brand new things.

Alan said this to me before "melody, I know exactly what's wrong with me" (he does this at least 3 time a day after goes on the internet).

so I said to myself "oh lord, what's he got now"? This time he goes "peripheral vascular disease". I walked over to him and said "you know, you just might have something there" I've been checking in that area and a lot of his symptoms make sense.

But we can speculate all we want, we just have to wait until November 20 and the first appointment.

I can't thank you guys enough.

I am curious about something though. Alan was diagnosed with Idiopathic PN, like many of you. Isn't it a given that SOMETHING has to be causing this PN? It just doesn't appear from no where right?

Does it every really happen that somebody has Idiopathic PN and they never ever find out why, even after loads of tests?????

Mel

I read a study on what happens to people with idiopathic pn over time, and whether a cause is usually found. I can't find the article now, but the conclusion was that in this group there was no need to repeat investigations over time, even, say, every 5 years. That if no cause was found initially, no cause will ever be found.

On the other hand, the course of these neuropathies is pretty "benign". They are almost all axonal, length-related, and not small-fiber. They produce pretty exclusively sensory problems, and no motor problems. Over the years, no one dies from it, though, if they become inactive, they get complications from inactivity.

I, for one, would be interested in seeing something which clearly explains to me the difference between length-dependent axonal neuropathies and small-fiber. Lots of people on the board talk about having small fiber neuruopathy, and I'm not sure what causes that, as opposed to what I have, the axonal type. I do know that axonal neuropathies are usually what you get when nerves are "poisoned", as it takes a lot of energy to bring nutrients all the way down the long axons to the tips. But small fiber--I don't get at all.

Glenn????? I know you must be listening!

There's a study
 

that shows a huge number of people originally diagnosed with idiopathic PN actually do find a cause if they check into a neuromuscular specialty center. So that's good news.

Hey, LJ, small fiber is pretty much by definition axonal. There's no myelin on those fibers to lose, and the only other option is really neuronal death, but re-branching in skin grafts suggests a lot of SFPNers still have live neurons. The small fibers have different structures, so they can be differentially hosed by autoimmune responses that leave large fibers alone. But they are also, well, small--very delicate, which makes them a lot more prone to hurt from certain conditions.

Mel, one thing to realize about those charts. Doctors can't see your results all in one place, not even on their PCs; I've watched them page from screen to screen, or have to click on things to get numbers. The beauty of those charts is that they put everything together at a glance, so a doc can see trends, pick up on things they overlooked or (often) spot tests that are completely missing.

I just wanted to wish Alan good luck for the appointment, i hope they can find the culprit.

charts
 

Melody--If you want, I'll put the data on the charts for you. All I need is for you to fax them to me. If you want me to do this, please pm me and I'll send you the info.

Steve: small fiber neuropathy may be axonal, but all axonal neuropathies are not small fiber. For instance, I have length dependent axonal neuropathy, and I'm told that that is primarily large fiber. Since large fibers are position sense and vibration, it would explain why I am more bothered by vibrating sensations than pain, per se. But I don't understand what causes length-dependent axonal neuropathy vs axonal small fiber.

Well, Steve beat me to part of the explanation.
 

Both you and Steve are correct, Liza Jane--there are predominantly small-fiber neuropathies, and these are by definiton axonal, and there are axonal neuropathies that affect primarily the larger myelinated fibers. There are also people with mixed types, as demonstrable on EMG/NCV and skin biopsy.

The distinctions may lie primarily in the causes--discovered and suspected. Many researchers feel, for example, that many of the "idiopathic" small-fiber neuropathies--those not caused by impaired glucose tolerance prior to diabetes or some other cause many non-specialists don't know to look for, like celiac/gluten sensitivity or unusual vasculitic conditions (I wonder about Alan as regards the latter)--may in the end be due to autoimmune mechanisms yet to be discovered. If one subscribes to the autoimmune molecular mimicry hypothesis, in which the body fights off a pathogen, but that pathogen has a structure similar enough to some structure of individual nerve for the attack to continue on those nerves, whether small axons, large axons, or both are attacked depend on the pathogen and one's own individual biochemical nerve structure. In fact, Dr. Latov and crew believe that it may get VERY specific. There are subtle differences in biochemical structure among types of an individual's small fiber nerves, for example--the C-axons, the A-alpha axons, the A-delta axons--and this may lead to a preferential attack on one group or other, with corresponding symptom differences (pain vs. numbness vs. temperature disruption). Add to that Dr. Moghekar's contention that one can also get preferential attacks on fibers at the dorsal root ganglia that are autoimmune in nature, leading to NON-length dependent conditions more accurately termed neuronopathies (they've always suspected this with me--it tends to produce body-wide, rather than progressive length dependent die back), and one can see how complicated this gets.

Dr. Latov believes that autoantibodies that attack certain parts of small-fiber axons will eventually be identified, just as a number of autoantibodies of larger nerve and of myelin (anti-MAG, anti-GM, anti-GQ, etc.) have been "discovered" over the last two decades.

And, of course, neuropathies that involve circulatory compromise, such as are found in diabetes and in many vasculitic autoimmune conditions, from lupus to Wegener's, can have preferential affects on small-fibers, large fibers, or both. In my own building here in Queens, a good friend has Bechet's disease, and the neuropathy secondary to that is mostly large fiber axonal as revealed by nerve studies and biopsy (he also goes to Cornell-Weill), and another neighbor with lupus seems to have primarily small-fiber problems. It may just be due to the individual's own circulatory tendencies in these situations.

And I haven't even gotten into the neuropathies due to certain exotic toxins, such as ciguatera poisoning, or infectious diseases such as HIV, which seems to take up residence much more often in the smaller fibers.

It just goes to show how complicated neuropathy diagnosis can be when there's no obvious "smoking gun".

(I haven't written that long a post in a LONG time.)

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,

Glenn, I don't want to ...
 

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!!!

Thank you, thank you--
 

--tributes line forms to the right. :D

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.)

Glenn, before I'd been 'gifted' w/PN...
 

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.

Joe, here is one--
 

--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

Thanks, Glenn
 

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.