Hi All:

One of the bigger points that the doctor said was that she explained the different way we perceive pain. She used this example:

"Let's say you are having a conversation with your friend and your face is in the direction of your friend and you are having an intense conversation with your friend. And all of a sudden, your right hand wanders and touches something hot. Your brain does not pause and say "oh I feel something burning, let me take away my hand". Your take away your hand instinctively. She explained that the brain does multi-tasking in this perspective.

She did go into the central nervous system, and she spoke of small fiber neuropathies (she never mentioned large fibers). She explained that the number one cause that most doctors immediately think of is Diabetes. Then she said "but we now know that there are many many causes of neuropathies. There are auto immune markers in certain people". She began talking in MEDICALESE and I looked around and many people, well, they didn't get it. I didn't get a lot either, but I managed to comprehend more than I ever could thanks to my coming on these boards.

Oh, one more important thing. I brought up the topic that many doctors do not take people with neuropathy seriously. They say to them "it's all in your heads, deal with it". She said "unfortunately doctors are not trained in neuropathy". And I said "why on earth not?" And she said "well, many doctors never come across a case. Some doctors say they never heard of neuropathy, they say "what is neuropathy?"

That's when I said "that's baloney, because diabetes has been around for centuries and we ALL know that neuropathy is a side effect of uncontrolled blood sugar, so how can doctors not be aware of the seriousness of neuropathy pain??"

Then after a while, after everyone had asked their questions, (remember we are being videotaped), I politely asked the following question:

"If a new patient came to you and said he was diagnosed for 15 years with Idiopathic Peripheral Polyneuropathy, and oh, by the way, his mother died from Guillian Barre Syndrome", would you just say "Oh, it's not connected"???

She looked at me and said "well, obviously, I am specializing in the field of Peripheral Neuropathy, so I don't pooh pooh anything. I would look into that, of course I would". I then said "well, for 15 or so years, my husband went to countless doctors, neurologists and this kind of specialist and that kind of specialist, and absolutely everyone of them, as soon as I said "his mother had Guillian Barre Syndrome, do you think there might be a connection?". Absolutely every one of them said "No, there's no connection"

This doctor then said "well, I can't speak for what other doctors have told you, but I would definitely have looked into the connection. I then told her "finally someone ordered a spinal tap and they found protein and he is now on IVIG." She then went on to explain that for some people IVIG works miracles and for others, it does nothing. For some people Plasmapheresis works wonders (Doug had undergone plasmpheresis 6 years ago, until his insurance cut him off). They even put a port in him at the time.

Then she said "there are medicines that will work on some people but the side effects are horrible, we are trying to do more research into neuropathy but doctors really don't know that much about it. It's an ongoing learning process. One of the people at the table said "we have to be our own advocate, doctors need our input, they just don't get it".

Oh, I told many people at the table about these forums. I had mentioned them the previous time I was there. I don't know if they visit, or lurk or whatever. But some of these people have pain and many just have numbness.

Oh, and this is important. We spoke about CIDP and GBS. The doctor said "we usually don't say CIDP anymore, we say AIDP. Then she explained it's now being referred to as Acquired inflammatory demylinating polyneuropathy.

She further said "when you get it immediately and it hits you and then it goes away, it's Guillian Barre. When you get it and it's prolonged for year, we call it CIDP, (NOW AIDP).

Then I said to her "I'm going to tell you what I'm taking and you will probably laugh at me (I was about to mention the Methyl B-12), and she said "I would never laugh at anything, I am always open to various ways people get help with their PN)> I explained about my taking Methyl B-12 and what it did for my burning. I said "it didn't help my husband, but it saved my life". This was exactly what she said "I would only make sure that you are not taking all this in a B-complex, like for example are you taking many b-complexes in one day"?? I assured her that no, just the Methyl B-12. She said "oh, that's good, but be wary of B-6, too much is toxic (everybody was writing all this down). She said "we have found out that B-6 can make neuropathy worse". So be careful what supplements you are taking. Don't take more than 50 mcgs of B-6 a day. She said "the other B vitamins are just fine" (Hey, finally found a doctor who didn't put down most of the B-vitamins.)

Wow, I learned lots of stuff at this meeting.

Oh, some of the people there said they had charlie horses and toe spasms all the time. These were the people with the CIDP. Alan does not get this.

These people said there is supposed to be a prescription quinine pill but that they can't get it any more but it helps with cramping.

The doctor said "just drink tonic water".

So I hope I have covered most everything I can remember.

You're lucky I remember anything any more. I'm almost 60. Oh my god!!! lol
And yes, Bob, and Liza Jane, you must come, if you can, to the November 15th meeting. I'll be sure and make sure of the date and post it on these boards.

Oh, another point the doctor brought up was depression and anxiety. She said "this is a vicious circle. I don't mean to pooh pooh your depression, your anxiety or your pain, but pain is made much worse by anxiety and depression, and if a patient came into my office and that patient had neuropathy and that patient told me she wasn't depressed, well, I would think there was something wrong with that patient, Of course you are depressed, you have pain, and pain makes the neuropathy worse. So it's a circle". "That's why I believe in bio-feedback and meditation, you all should try it for 30 minutes each morning, get yourself a mantra, it could be anything, let's say if you are catholic, it could be a religious saying, just keep saying it over and over, until you change your brain patterns".

This is exactly what she said. God, my brain puzzles must be working overtime, I'm remembering all this stuff. lol

melody