Hi Bob, i use to like a drink or 3 too , but my neuro was also adamant that mine was caused by prediabetes, he said i did not have alcoholic neuropathy, its just the beer is full of sugar which was defiantly not helping my blood sugars, he told me that i would not stay prediabetic for to long if i didn't change my life style, diabetes 2 was on its way , that was enough for me.
all the best,
Brian

Booze also depletes lotsa vitamins, esp B12.
I think that it was a result of that, not the booze proper, similar to you.
But my neuro is an old geezer and kinda set in his ways.
(but I think he's great, anyway)
I'll have to go around him to get add'l testing.
But my PCP & I work well together.

alcohol and some drugs affect the aldehyde dehydrogenase metabolic
system. Thiamine in particular is used to get rid of aldehydes that build up
and hurt the nerves. So Thiamine and/or benfotiamine are useful for this.
Other things would be vinegar, Flagyl, disulfiram, etc.
Alcohol dehydrogenases also are affected:
http://en.wikipedia.org/wiki/Aldehyde_dehydrogenase
http://en.wikipedia.org/wiki/Alcohol_dehydrogenase

from http://www.ceri.com/alcohol.htm

I don't want to hijack Billye's thread, but i was definitely deficient in the B vitamins, always really tired and had a swollen tonque for ages before supplementing with multi B & b12..... b1 did help the burning & the lipoic acid i have recently added, got rid of the occasional slight burning i had left these days.
Thanks for those url's MrsD.

I haven't posted much, grappling with pain issues and med intolerances, sorry, I do try to read as much as I can. Waiting for my orthotics which will be ready in 2-3 weeks....which hopefully will get me up and moving a bit more...now that the weather is becoming somewhat less cold.

Anyway, interestingly, despite all the yea's and nays, my medical records that I requested and finally got, DO list Sjogren's by lip biopsy....but, I am not treated for it, because, of no inflammatory markers of any kind anywhere....except one sky high ANA elisa, that got blown off.

I managed to bite my lip in my sleep last night....(bite splint goes back in tonight) but I bit myself where my lip biopsy was, and it is still numb there so it doesn't hurt....but wow, the bite woke me up, it was so hard! Good thing I bit myself not some one else. (All this upset is over meds for pain and what and what does not work....I hope this new idea works, as I am still finding places where I missed the target with my last projectile puke...apparently, I grind my teeth when in pain, or just for recreation.)

Well regardless, I can't get to Hopkins, as my insurance would not pay...heck it won't pay for lyrica....it has paid for a lot of other things tho, so I am not complaining....I am not sure at this point how much of anything else I would tolerate anyway.....A whole lot of me is on slides, and I have had enough autonomic testing to know I would not have made the cut for NASA....shoot, bought all those Depends for nothing. (Let's see who gets this joke!) No new career for Cy....and no ride on the Vomit Comet. (That is fine, I don't need a ride into space for that experience....I do quite well up chucking on terra firma.

I got the Depends statement! all the braincells aren't dead.

I think seronegative Sjogrens is a very real issue. There are posts all over the place in the Sjogren's forum about the diagnosis of this. And nerve damage from it is very real. I am slowly worsening. I fight just like you do...must be something in the DNA for us both. My husband calls it stubborness. Sjogren's is progressive, remember. It is imperative to slow it down. There is no way that I know of to stop it, but you can slow it.

Billye

Heh, heh....you won't go senile if you get that one!!

We don't have Lyme here either....LOL....of course, I have that on my list too, and it says 'physician diagnosed, EM rash'.

My doc is European, so he was liberal and did treat me with IVIG, and steroids....however, neither of those seemed to slow whatever I have down...well maybe it did....but, for now, no treatment.

I am a bit, not horribly, but a bit concerned about the cardiac changes. I will see what happens with my next echocardiogram. I can't help but believe it is all related....how many unrelated things can one person have...especially some of the rarer things....'Oh this is a rare but normal finding' OK, this is why I have 7 of them?

BTW, my son had positive blood cultures....the infection got into his blood...don't worry, he is OK, he has been and is still being treated...and new cultures were drawn....and the exact source of the problem remains a mystery. (I knew he was really sick and I am still miffed at the ENT resident who would not give him that second course of IV antibiotics). Regardless, he is on the mend.

First of all I agree totally with you Billye,and that's why I glad some
of this group can go..

C I understood both of your posts,I din't know that about you son,
glad you didn't bite your husband or the yellow dog..

The info is intriguing, and I believe I would make a most interesting patient for Johns Hopkins, but no way Jose would my insurance cover it. As it is, I'm gonna be paying Mayo for the next two years for my visits last December and January, so I can't go back east on my own dime, cuz I got no dimes left.

Wonder how many patients this guy's getting who have stroke like symptoms and/or brain lesions? Surely I can't be the only one with seronegative Sjogrens with such odd symptoms.

At the moment, my neuropathy symptoms seem to have stabilized again. The slightest bit of overuse will set things off, and my feet develop burning sensations on whatever part of them is touching a solid object, but the ankle weakness completely stopped.

I think the Imuran must be doing me some good. It's hard to tell sometimes with these meds because they don't really cure anything, but most of my Sjogren's symptoms are either the same or somewhat improved compared to when I started the med, which is much preferred to the gradual decline I was experiencing.

Too brain fogged to remember what else I was gonna say. Am having problems with a flooding basement, so will check in again when I can.

fanfaire

Just discovered this site and have sent an e-mail to this doctor. I am a 51 year old white male, so I don't fit into the "normal" profile for most autoimmune diseases. Have been working with a Neuro for possible MS, but blood work came back with anti-La/SSB and low levels of ANA. He thinks it is Sjogren's or Lupus. Had first appt. with the Mayo on Friday and toward the end we ask what he is thinking and he asks if we have heard of ALS. He also says he is not taking MS off the list.

I have 8-12 lesions in the frontal subcortical lobe that are either ischemic or demyelating. Neuropsych says significant cognitive decline due to MS or lupus. CSF says elevated proteins and glucose. I cannot walk heel to toe or even stand with my feet together. Pretty bad ataxia. Some tingling in the arms, especially at night.

Two years ago I had my gallbladder out. No gallstones, just wasn't working. I had unsteadiness and tingling in my arms at that time, but it was dismissed. During that work-up it was determined that I have an enlarged spleen.

I do not have the dry eyes or mouth, exept in the morning, so I'm not sure if I fit in with this Sjogren's Syndrome. But, reading on the internet it seems like some people have CNS sypmtoms prior to the dryness.

It seems like all of this started since about 4 years ago when I got West Nile Virus. Not sure, but it seems that way.

Has anyone had experience with the Mayo and do you think they are aware of the unusual presentations of this disease?