Quote:
Originally Posted by LizaJane
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.)
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I'm glad you caught the quest people's mistake!
Ok, Here is my thinking about having Diabetic Neuropathy.
- I am 21, which is young.
- I don't even have Diabetes, I just have elevated blood sugar.
- And being on the Drugs to correct the blood sugar did not seem to help my feet, in fact, they continued to worsen.
I agree that it is more likely auto immune based on the fact that I keep coming down with different auto immune problems. One right after the other.
As for getting all the blood tests it would take a ton of work. As I am seeing 7+ doctors at the moment and all have done blood tests on me. And it would cost $$. They charge by the page in some of the places I go.
I have downloaded the neuropathy spreadsheet and will bring it with me the next time I go to my neuro. But which one has the autoimmune tests?
And as for looking for rheumatological causes I am currently seeing a rheumatologist who is currently testing me for sarcoidosis. (I have the CT tomorrow, which means I can't take the blood sugar drugs for 48 hrs. after that. So my sugar charts will look like my sugar went wacko, but as it dosen't seem to be helping much to have it being low, I hope it won't matter.)