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Old 07-29-2008, 02:36 PM #1
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Default Based on all you've said--

--the doctors should be looking for an inflammatory autoimmune condition first, though it is quite possible for small-fiber neuropathy to result from impaired glucose tolerance that has not yet reached "frank" diabetes.

Sarcoid can certainly result in peripheral neuropathy in many cases, as can any of the autoimmune vascular or connective tissue disorders--not just rheumatoid arthritis, but lupus, polyarteritis nodosa, Sjogren's syndrome . . .have you been titred up for the more specific SS antibodies that are often involved with the latter?

Take a look at:

http://neuromuscular.wustl.edu/antibody/pnimax.html

http://neuromuscular.wustl.edu/antib...op.htm#sarcoid
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Old 07-29-2008, 06:04 PM #2
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Default hmm....

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Originally Posted by glenntaj View Post
--the doctors should be looking for an inflammatory autoimmune condition first, though it is quite possible for small-fiber neuropathy to result from impaired glucose tolerance that has not yet reached "frank" diabetes.

Sarcoid can certainly result in peripheral neuropathy in many cases, as can any of the autoimmune vascular or connective tissue disorders--not just rheumatoid arthritis, but lupus, polyarteritis nodosa, Sjogren's syndrome . . .have you been titred up for the more specific SS antibodies that are often involved with the latter?

Take a look at:
The whole small-fiber neuropathy to result from impaired glucose tolerance that has not yet reached "frank" diabetes is what they were thinking for a while now. However the Endocrinologist is begining to think otherwise, as the treatment (for diabetes) has done nothing for me, in fact I seem to be getting continuously worse.

I don't know if I have been "titred up for the more specific SS antibodies" but I think it is worth looking at, especially since the only thing so far that helped my feet greatly was the steroids. (A big clue to several doctors.... of what they don't say.)

Thank you so much for your help. I will be looking at the links again, when I have more time to read everything throughly.
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Old 07-29-2008, 06:18 PM #3
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Don't be afraid to move on to another Dr, if any of them stop looking for answers for you.
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Old 07-29-2008, 09:31 PM #4
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Default Also, this site

Liza Jane's testing site www.lizajane.org may give you some help too. But based on your symptoms, I have to agree with Glenntaj.

You have described some of the same things I have and similar results with anti-inflammatory medicine. I have Sjogren's Syndrome with neuropathic damage coming from it. It's also possible you have more than one problem. The pre-diabetes has caused one of our other members,... "Brian".... to suffer from neuropathy.

Good luck,
Billye
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Old 07-29-2008, 10:25 PM #5
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Yep, it sure did.... trouble is when the nerves are repairing or trying to regenerate at first it is nearly impossible to tell the differance between worsening or repairing, once i got my sugars levels right, i had a lot of flare ups and many months after i started to notice slightly less severity of symptoms and that went on for a long time.

Thiamine [B1] helped with my burning, i took 100 mg x 3 times daily which did help some, R lipioc acid also helps some with the burning but it can drive your sugar levels down so must be very carefull if taken oral diabetic meds like Metformin as well, Benfotamine [ a very powerfull B1] has helped others as well.

When i first got these problems. one doc give me anti inflamatory drugs [ 6 celebrex daily ], & they helped. so i am not surprised that the steriods helped you.

best of luck
Brian

Last edited by Brian; 07-30-2008 at 01:24 AM. Reason: spell
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Old 07-30-2008, 01:38 AM #6
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Default Get Checked For Celiac

Erythema Nodosum is also a sign of celiac disease. Celiac can also cause neuropathy, so you need to get worked up for celiac as well as some of these other disorders. Make sure you get a gastroenterologist that knows something about celiac. You will need a few blood tests (one for the gluten antibody) and a stomach biopsy to be certain. Based on the fact that you mention IBS, celiac is a good possibility. If I were you I would get tested for gluten antibodies--they can cause small fiber neuropathy.
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Old 07-31-2008, 08:08 AM #7
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Erythema Nodosum is also a sign of celiac disease. Celiac can also cause neuropathy, so you need to get worked up for celiac as well as some of these other disorders. Make sure you get a gastroenterologist that knows something about celiac. You will need a few blood tests (one for the gluten antibody) and a stomach biopsy to be certain. Based on the fact that you mention IBS, celiac is a good possibility. If I were you I would get tested for gluten antibodies--they can cause small fiber neuropathy.
Hmmm... I never knew that Erythema Nodosum is a sign of celiac disease. I do actually have a gastroenterologist, and he does know about celiac. (Or I think he should. He is chief of gastroenterology) He tested my blood for celiac, and it was negitive. (I def. havent had a stomach biopsy. (eeks.) I have no clue if I have been tested for gluten antibodies (Is this different from celiac testing?). I will have to check with my dr. (Is this something the Gastro would do?) Thank you so much for your help!
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Old 07-31-2008, 08:01 AM #8
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Originally Posted by Brian View Post
Yep, it sure did.... trouble is when the nerves are repairing or trying to regenerate at first it is nearly impossible to tell the differance between worsening or repairing, once i got my sugars levels right, i had a lot of flare ups and many months after i started to notice slightly less severity of symptoms and that went on for a long time.

Thiamine [B1] helped with my burning, i took 100 mg x 3 times daily which did help some, R lipioc acid also helps some with the burning but it can drive your sugar levels down so must be very carefull if taken oral diabetic meds like Metformin as well, Benfotamine [ a very powerfull B1] has helped others as well.

When i first got these problems. one doc give me anti inflamatory drugs [ 6 celebrex daily ], & they helped. so i am not surprised that the steriods helped you.

best of luck
Brian
Hi Brian,
Ok, the B1 is interesting. I have never heard of that! I might have to try it.
As for the celebrex, I did actually try it. (I was taking it for migraines at one point...) and it made my feet worse. Don't ask me why. Incredibly weird, but what can you do. It is also interesting that it took so long for your feet to "right" themselves. Can I ask if you were full-fledged diabetic.. and for how long before you started treatment? I am wondering if there is a connection.
Thanks!
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Old 07-31-2008, 08:10 PM #9
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Hi Brian,
Ok, the B1 is interesting. I have never heard of that! I might have to try it.
As for the celebrex, I did actually try it. (I was taking it for migraines at one point...) and it made my feet worse. Don't ask me why. Incredibly weird, but what can you do. It is also interesting that it took so long for your feet to "right" themselves. Can I ask if you were full-fledged diabetic.. and for how long before you started treatment? I am wondering if there is a connection.
Thanks!
Hi again, no i wasn't classed a full blown diabetic 2, i was prediabetic , sugar levels were not high enough to be classed as a diabetic 2 but were higher than a normal reading should be, this was diagnosed by a 3 hour glucose tolerance test....... prior to this, [one of the many doc's] sent me for a fasting glucose test and told me my sugars levels were normal, " no sign of diabetes whats so ever " luckily i found a doctor who give me the proper testing [ glucose tolerance test ] and a cause was found in my case anyway, yours may not have anything to do with your elavated blood sugars but it is a real possability, amongst many other possabilities.

oh yeah, as far as i know the best way to get rid of Prediabetes, is diet and exercise, get rid of the cause, the glucose lowering drugs won't and nerves don't heal quickly, it takes many months to years.

best of luck,
Brian

Last edited by Brian; 07-31-2008 at 08:32 PM.
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