[MelodyL]

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.

[dahlek]

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

[MelodyL]

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

[LizaJane]

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!

[MelodyL]

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

[LizaJane]

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!