Re: Nerve pain - pelvic spasms

[Guest guest]

J,

I remember you and I am still saying the same thing.

Gluten Sensitivity if it is about anything, is about

neuromuscular disorders. It is also about not being

able to digest certain starches--sometimes beyond even

the glutenous ones (plus other things you mentioned).

This autoimmune disease is not an allergy. The blood

tests used by the mainstream docs are not adequate or

accurate and the only place to get a really accurate

test is at a lab called Enterolab and you can do it by

mail.

The following link is just a short abstract about the

subject of neuromuscular connections to the gluten

disease.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2169858

All the best,

Arline

--- JSyun4505@... wrote:

>

> Hi Everyone.....

>

> I've been off the board for quite some time, not

> because I found a solution,

> but because I simply gave up for awhile. I was

> living in NY and seeing Dr.

> Ledger when I last wrote, who did genetic testing

> and told me I had both gene

> polymorphisms. He suggested a list of

> anti-inflammatory solutions - none of

> which were right for me and after trying all kinds

> of steroid treatments (all

> of which caused more pain), I needed to take a

> break.

>

> Since then I've moved back to Michigan and today I

> saw the doctor I started

> with ten years ago - Dr. Sobel. Dr. Sobel was quite

> upset that I was put

> through all these tests and painful treatments in

> NY -- he felt that it was fine

> to do research with such things - but not to

> subject patients to them -

> particularly since there are no solutions. All it

> does is scare the patient -

> which, of course, it did. When I told him the

> drugs that were suggested, he said

> he was very glad I turned them all down - because

> there are risks

> involved.......

>

> But beyond all that, this is what he thinks now. He

> said I have no signs of

> vaginitis at all - that I've never shown any signs

> and he did an exam today

> that went beyond your regular vaginal and pelvic

> exam. As he poked around, he

> touched a spot on my lower back that almost made me

> jump off the table. He

> immediately said that's your sacral nerve. Others

> have touched there before

> (including a neurologist) and been baffled by my

> reaction. After more poking

> around - including a pelvic exam - he said what I

> have is neuro-muscular. That I

> have acute nerve pain and pelvic spasms. I'm sure

> I've read about this before

> here - but now I really need to understand it. Is

> this the whole " pelvic

> floor " thing others have mentioned here? He

> mentioned physical therapy and the

> whole dialator thing has me a little freaked out -

> given the pain I have with

> intercourse.

>

> He is referring me to someone to be evaluated and

> after he gets her report,

> he's going to decide if I need some sort of drug to

> calm the nerve pain. I

> asked him what kind and he said he wanted to think

> about it and look at what

> else I'd tried. Are those the antidepressants I've

> read about? I don't do well

> on any sort of antidepressants.

>

> He also said, for any of you that are in Michigan,

> that this is Hope

> Haefner's specialty. Have any of you been treated

> for this with her? I know she's

> got a 6 month waiting list.

>

> Any guidance you can give me is so appreciated. I

> don't know why it took 10

> years to get to this (or even if it's the right

> diagnosis), but I don't think

> I have much choice, other than to be evaluated.

>

> BTW, I still react (itching, vaginal swelling) to

> any starchy carbs. I don't

> know how they can be related. Any one have a clue or

> could it be that I've

> got two things going on?

>

> J

>

>

>

>

>

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