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!!!

Hi Mel, the part I can't understand is why does his feet feel better [ although only temporary ] I know, but still he still feels relief after seeing the chiro/ neuro, just doesn't add up in my mind.

Brian:

I just showed Alan your posting. He said to tell you:

When Dr. Theirl uses a G5 machine on his back, he concentrates on the L5 and L4 and the Glutes and towards the hip. Dr. Theirl feels this is where Alan's problems seem to lie. A lot of muscles in the body do not get used. Alan says that Dr. Theirl told him that when he uses the G5 machine on Alan, it activates the underlying muscles that have never been used. It causes tremendous circulation of blood down to the feet. It takes ALL THE TINGLING AWAY AND ALL THE BURNING. So ten minutes of a G5 machine and you are in heaven. Alan says he has no pain the rest of the afternoon after leaving Dr. Theirl's office.

This may not work on anyone else because of the various types of neuropathy. Dr. Theirl feels it's his back. The back doctor says no.

So what can we do??

This is enough to drive one crazy.

lol

Melody

I know what I would do, without question go to Dr. Theirl, he has proven to be able to help Alan, were as the neurosurgeon sounds like he is a bit jealous that the neuro/chiropractor knows how to treat him.
I know there is a few neuro/chiroprators in my state, perhaps I should ring them up and tell them that there is no such thing. , some docs really make you laugh, reminds me of a professor of neurology that I saw when I first got PN, going by a nerve conduction test " I had no signs of peripheral neuropathy "
this is what he wrote back to my gp, the goose didn't even know how to test for small fibre neuropathy, once I got see a decent neuro he got real angry when he read this other neuro's report, and said who is the idiot that wrote this, I told him and he said " oh him " and just through the report accross his desk as you would with crap.
I have found that some doc's are really terrific and others think they are, say no more

--but there are neurological chiropractors, such as Dr. T. (They even have a professional association.) This may have been just a little professional nitpicking--people in the medical professions are very sensitive about titles, especially in the Internet age when many feel their status as purveyors of specialized, esoteric knowledge is eroding.

Now, as far as Alan goes, of course he's been through this for quite a while now, and of course to this point there's been no definitive "smoking gun"--unfortunately the case for many. The evidence as to the etiology of his neuropathy has been mostly circumstanital/anecdotal, simply because the medical technology/knowledge is as of yet insufficiently advanced in this area.

Still, I suspect there may be multiple factors contributing to his symptoms. He may have some sort of low level autoimmunity going on, that has not been documentable--though I'd love to see the results of one of Cornell Weill's ganglioside agglutinin tests on him (the only test of autoimmunity that ever came up even slightly positive on me--it's a gross test of autoantibody activity). The fact that he has psoraisis certainly leads to the suspicion that autoimmune factors may be a part of this--people seldom have just one autoimmune condition. (And Ashkenazic Jews are rather prone to autoimmune syndromes--just ask them. )

But, there may be other factors going on here that compound the symptoms--including compressive effects, possibly from the spine (MRI's are not always accurate at noticing minor impingment of nerve roots--none of his reports have ever mentioned foraminal narrowing, have they?). Small degenerations of the spine are common is all of us as we age, and are not always heavily symptomatic--hey, I'm full of disc bulges, oesteophytic complexes, etc., that occassionally increase my symptoms, especially in certain positions. Pressure may even be coming from lower down in his legs or feet. The ankle is a common area of nerve entrapement/compression, as is the knee--and this can even be caused by muscular overdevelopment in athletes (so called compartment syndrome). It may be that Dr. T's treaments help to releive such pressure for short periods of time and that's enough to mitigate the symptoms. (You may remember we discussed the double-crush hyporthesis--the idea that two "minor" compromised to a nerve along its length produces a symptomatic effects that is greater than the presumed sum of their parts. people with neuropathies form one cause are far more prone to even small compressive effects on their nerves than normals.)

It also occurred to me that Alan's symptoms may be contributed to by some degree of peripheral artery/capillary compromise (he does have a history of heart/circulation issues) so that his symptoms may fluctuate depending on how well his circulation is working to his legs/feet--and Dr. T's theory of loosening muscles to take some of the pressure off of those vessels could certainly fit in with that idea.

In any case, you can certainly pursue further opinions--and I know you'll always bring Alan's full medical history with you to any of those. It's entirely possible, though, that the "a-ha" moment will never occur. (It hasn't for me, though we have our suspicions.)

Mel,
If it were me, I'd get off the 'cause' kick. It does nothing more than cause (no pun intended) anxiety and stress, which is not good for PN- that's proven!
Do what makes you (Alan) feel better and live with it.
Get on with your lives and try to live as normal a life as possible.
Concentrate on the things you can try to do something about (healing the foot).
Believe me, once the 'acceptance' mode kicks in, you'll both be better off.
Never be complacent, always be aware of new and better ways to diagnose, but stop going ga-ga nutso about finding the cause. Your posts seem to be highly detailed, and anxiety ridden- whether its you or Alan. Let it lie.
Just MHO.

Melody so sorry about all the roller coaster information you are getting from your doctors, sounds like the doctors are not sure what is causing Alan's neuropathy. I know that we like to know what is causing it so that we can stop it from doing more damage, but for some reason many people just don't get the answers, but thumbs up for you and Alan for continuing to try.

Glad to hear that Alan does get some relief with the Chiro.even though it is temporary. Those temporary relief is what gives us hope and maybe some normal life can come back.

Trish

Bob:

You wrote:

"Your posts seem to be highly detailed, and anxiety ridden- whether its you or Alan."

Sorry if my posts are detailed. I thought that is the purpose of these threads, ...to share info and get some answers.

And it wasn't OUR IDEA to go to the back doctor. It was HIS NEUROLOGIST's idea. She made the appointment. Alan and I felt we had to go because his neuro said "I believe it's your back that is causing the neuropathy".

And I can assure you that neither of us is angst ridden. We go about our business each and every day and make each other laugh. You only have to read some of my posts to realize this.

And we attend the Neuropathy Support groups as often as we can. I bake muffins and everyone seems to enjoy them.

I am not the kind of person who goes around with a pessimistic kind of attitude (althought I certainly am entitled to do so due to the fact that we have a son who is no longer in our lives. That is enough to make anyone ANGST RIDDEN.

But I digress.

No more detailed reports, I can assure you of that.

Melody

Thanks Trish for your kind comments.

Each day I give Alan a full body massage. He says "all the blood seems to go into my feet and all the pain goes away".

Some days are better than others. The weather has an affect on his neuropathy also.

And this morning he went to bed at 7 a.m. and he was jumping around in the bed saying "oh my god, my neuropathy is killing me".

I just massaged him, he went off to sleep, I got up and went out for breakfast. He seems to sleep better during the early daytime (as to many others who have neuropathy)

It's not a one size fits all syndrome, is it?

I hope you are having a good day hon.

And thanks again.

Melody

Melody first hello. I am sorry about your husband and the continued struggles. You are an amazing wife. I am clueless but mean well ? is the metronics a pump or the spinal cord stimulator? I thought the pump sends medication through ones system and the scs is what changes the signals and sometimes causes tingling where the pain was. I was suggested though now it is on hold the scs so that is why and also know someone from here who just got one after the trial.
You are so right this is not one size fits all and part of the frustration is what works for one may not for another. Hope you are taking care.