Okay, here's the absolute latest news on Alan's Peripheral Neuropathy. (This is long, and I apologize) but I have to give all the info that we found out yesterday. (and from what I've been reading on these forums, Alan has a LOT OF COMPANY IN THIS DEPARTMENT!!!

THEY STILL HAVE NO IDEA!!!

Ou journey has been for 18 years, going from one doctor to another, having one test after another (ruling out diabetes, heavy metals, ANYTHING THAT MIGHT CAUSE HIS NEUROPATHY).

He HAD had a spinal tap whcih had revealed a bit of protein in his spinal fluid. His neurologist thought he might have CIDP so she started him on IVIG 2 years or so ago.

A few months ago, she came to the conclusion that he does NOT have CIDP and she is scaling down the IVIG. Just to see how he reacts. She feels his improvement is neglible. His pain is still there. He has no motor neuropathy by the way.

So during his last visit to his neurologist she said "I THINK YOUR NEUROPATHY IS DEFINITELY COMING FROM YOUR BACK".

We had also thought this was true because every time he comes out of Dr. Theirl's office (his chiro/neurologist), he feels like a million dollars and he has no pain in his feet (althought it's temporary).

So she told Alan to see the neurosurgeon again. This was yesterday.

We arrived with all his previous reports and the neurosurgeon had the films of his absolute LATEST MRI that he took in late December.

So Alan has SEVERAL MRI's of his back on file.

So we were in the waiting room for over 2 hours and reading all the lumbar and cervical pamphlets and reading all the literature which showed various views of people's vertebrae and spine.

So during this time, Alan is going "Look at this spine, look at that spine, all these degenerative discs and bulges, I'LL BET THAT'S WHY I HAVE NEUROPATHY, maybe he can do some minimally invasive procedure and my feet will stop burning". (Oh, this is the 4th doctor we have been to regarding backs and spines, etc.)

So we walk into his office, he comes in, (Alan had originally met him when he had his first round of IVIG in the hospital 2 years ago). The guy said "Didn't I meet you already?" and Alan explained about the IVIG, and the doctor said "So your neurologist thinks your neuropathy is from your spine, right?"

Alan says: "Well, yeah, it makes perfect sense. There has to be SOMETHING wrong with my back and some thing is going down my legs into my feet that is causing the burning between the toes, etc. etc."

The guy shook his head sadly and said "I can categorically tell you 100% that I disagree with your neurologist. This is NOT FROM YOUR BACK"

We both looked at him and said "What???" Alan then pointed to his films and said 'Look at these bulges and discs, and look at this and look at that""This is bad, that is bad". and the doctor said::

"Someone has been in my waiting room reading my pamphlets!, now haven't you??". We all burst out laughing at that time, because the guy is a doll and took all the time in the world wiith us to explain exactly what is going on with Alan's back and why it's not the cause of his neuropathy.

He also examined Alan, had him walk, had him balance, had him stand on his toes, and heels, ALL THE STUFF DOCTORS MAKE YOU DO.

He then asked Alan the magic question.. He said 'Alan, when you walk 5 or so blocks, do you then have to sit down and rest?" and Alan replied "why no, if it wasn't for my foot ulcer, I could walk forever".

Alan has no back pain at all by the way, never has, never grabbed his back and said "Oh my aching back". NEVER!!!

The doctor then said "I want you to go and google Peripheral Neuropathy Symptoms, and then read them, and then google Spinal Stenosis Symtpoms and read them"

Alan's symptoms completely negate his back being the cause of his neuropathy. He said other stuff but I can't remember a lot of it. But he did address each and every question we had and explained that in his professional opinion, his neuropathy is not from his back. Also, in one of his MRI reports it says: "no evidence of Spinal Stenosis"

I then said "So we are back to Idiopathic, right"? I also said "Listen, SOMETHING is causing his neuropathy, you don't just get neuropathy from NOTHING".

He said "You are absolutely correct, but there are over 2000 (he said he was using that number as an example), but let's just use the number 2000"). There are over 2000 causes of a person getting neuropathy and we can't ever find the exact cause".

I said "He's had every test in the book, isn't there a scan or something that you can put him in a machine (I mean this is 2009, not 1909), and can't you put him in some kind of machine that will scan his whole body and then the technician can say "AHA, there it is, there's why Alan has neuropathy". He said sadly, "I'm sorry but there is no machine that does this presently".

He then said "sometimes people have biopsies and I said "Oh, Sural nerve?" and he looked at me and said "Exactly, but why would we do that, 90% of the time, it doesn't tell us anything, because we already know that Alan has peripheral neuropathy".

Then I said "What about the Medroniic pumps". He took us over to a table that had 3 types of implantable pumps, and described them. I said "and you do a trial for one week and then you see if it works, right". He said "Exactly, I see you've been down this road before".

I said 'how exactly does it alleviate pain?" He said 'the wire sends electronic signals down the legs (it causes slight tingling) and SOMETIMES it relieves the pain in the feet" But there is no guanantee.

He also said "Sometimes, in some cases, it CAN CAUSE PARALYSIS.

That's all Alan had to hear.

He told Alan, "you know what the best exercise for you is?" WALKING. Alan said: "yeah, I know but I have a recurring foot ulcer so walking is out"

He then said "Can you swim"? Alan said : "Of course, and my gym has a pool". The doctor said "but you can't go into a pool if you have an open ulcer or any sores on your body because there is bacteria in the pool, and you can get a nasty case of cellulitis or vasculitis (I might have gotten this information wrong but I'm just including the jist of what he said) "

Alan has psoriasis, and his foot ulcer, while it's healed, well, he's not going into any pool because of the way his psoriasis looks.

So we then asked him the BIG QUESTION.

What do you think about HANGS UP, (The thing that you buy, and you lay down on it, and you gently swing it so you are almost upside down and your body stretches and the vetebrae goes back into allignment". He said "there's nothing wrong with that, you can try that".

SO HE DIDN'T SHOOT THAT DOWN. Alan is thinking very hard about this.

The doctor talked about how good swimming and exercise is, BUT NOT WEIGHTLIFTING because it can put pressure on the back and Alan is 62 years old and he has the back of a 62 year old man with bulging discs (but they are not that bad).

So today, I am taking out the Health Rider from the closet, putting it in the living rom and if that doesn't stretch his back (believe me using a Health Rider cn stretch ANYONE'S back), well, we'll just wait and see.

I believe this is the LAST back guy Alan is going to see. It's been 18 years. He's a lot better off than he was 7 years ago when he was almost suicidal from the neuropathy pain and then he found Dr. Theirl.

Oh, when I mentioned that he was a chiropractic neurologist, this doctor said 'There is no such thing as a chiropractic neurologist". I guess in the medical community, doctors don't recognize chiro/neurologists.

The doctor also said "Alan definitely does not have any motor neuropathy going on"

He also said "Do you know what we think of the word Idiopathic? Idiots and pathetic.

He said "Of course there IS reason why Alan has neuropathy, but you probably won't ever find out why".

He was very nice, very informative, very friendly, and ANSWERED ALL OF OUR QUESTIONS.

He showed Alan all the films of his spinal column and explained why, in his professional opinion, his neuropathy does not come from anything to do with his back.

So I just wanted to update you all.

Now I'm getting my Health Rider out of storage.

Take care,

Melody

P.S. Alan did say to me on the train going home "I wonder if I might try the Peripheral Neuropathy Center at Cornell".

Oh Well, I guess it couldn't hurt!!!