Originally Posted by LizaJane (Post 336092)

Hi Mac,

While it is true that early diabetes can cause neuropathy, I would think that at age 21 that's pretty unusual. It seems more likely to be autoimmune in some way. I know you've had a zillion tests, but what I'd suggest is calling your doctors to ask them to fax your results, or just go and pick them up.

Then download the spreadsheets on .... for diagnosing sensory neuropathy and see whether you've had these tests. You'll need to download the page with the autoimmune tests.

Many doctors do not know how to correctly look for hypthyroidism, how to evaluate a B12, or how to do an indepth search for an etiology. Most people here who have brought the lists to their doctors have had good reactions from them.

Have you had a brain MRI for MS? Or visual evoked potentials? Having had optic neuritis, these might be good to have. Did you say you had erythema nodosum? Conditions that are associated with erythema nodosum include medications (sulfa-related drugs, birth control pills, estrogens), strep throat, Cat scratch disease, fungal diseases, infectious mononucleosis, sarcoidosis, Behcet's disease, inflammatory bowel diseases, and pregnancy.

Your parotids are seemingly inflamed. This means you've had inflammation of the optic nerve, inflammation of the skin, inflammation of your parotid glands. Given these three autoimmune conditions, looking for rheumatological causes is most urgent. Please look at the page on lizajane.org and print it out. Ask your doctor if you've had all those tests, or just get the results and fill out the chart yourself, then ask for the rest.

The website is

If you stick with the labsheets, this is what they might look like over time (This is mine, 3 pages)


Don't give up looking for an answer, but try to take a bit more control by knowing EXACTLY what the results are.

(I had blood taken a few weeks ago for serum cortisol. When I called for the results, the nurse said, it's .6, normal. That didn't sound right to me, but she insisted. I asked her the normal range; she said she didn't know, but Quest said it was normal. It is far from normal, but the person at quest probably misread the . in the .6. If I hadn't gotten my own copy, we would have missed that my pituitary is suppressed, yet again.)

Originally Posted by diagnonsense (Post 336315)

Ok.. I don't want to be rude.. I just want to give you a new perspective on diabetes that you may not have already known.

Being 21, you probably think you are too old for type 1 and you may not fit the risks for type 2.

You are NOT too old for type 1. You are only 21 years old, and juvenile is an older term that really isn't used much anymore.

ALSO.. they probably gave you ORAL medications for the diabetes.
Did you know that type 1 diabetes does NOT respond to oral medications?
You must have insulin.
That would explain why it did nothing for your neuropathies.

Right now you have very poorly controlled diabetes if you are taking a medication not designed to control your type.
I wish you would do some research on diabetes mellitus... and not poo-poo it away.

One last thing.. Elevated blood sugars ARE diabetes. *what is your perception of diabetes?* Your words were I don't have diabetes, I JUST have elevated blood sugars.
It could have been as a result of one of your medications, but if you continue to have those, and are not on those meds anymore.. then I am going to have to think that your neuropathies are diabetes related, and your doctors are treating it incorrectly.


Now, I really didn't want to sound overly harsh, but, if you do have diabetes, you do need to get it under control.
For yourself.

Originally Posted by Macophile (Post 336012)

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!

Originally Posted by Brian (Post 336451)

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 " :rolleyes: 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 :)

Originally Posted by Ides (Post 336568)

Are you positive that your bowel issues are IBS? The reason I ask is that erythema nodosum and peripheral neuropathy both occur in Crohn's Disease. Crohn's is autoimmune and has many extraintestinal manifestations. Many people with CD get uveitis/iritis. I have peripheral neuropathy from CD. I have also had erythema nodosum and iritis several times.

Perhaps the GI could order a Prometheus Serology 7 test if your insurance will cover it. It is somewhat pricey if you have to pay for it on your own.

BTW, have you had a colonoscopy to rule out inflammatory bowel disease? A diagnosis of IBS is one of ruling out all other possibilities, not just relying on symtpoms. If your IBS diagnosis was made without doing a colonoscopy, then that diagnosis is suspect in my book.