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.

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 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

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!

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.

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.

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.)