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!

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 www.lizajane.org 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 http://www.lizajane.org

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

http://www.lizajane.org/Users/lizajane/Lizajane's labs.xls

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.)

I'm glad you caught the quest people's mistake!

Ok, Here is my thinking about having Diabetic Neuropathy.

1. I am 21, which is young.
2. I don't even have Diabetes, I just have elevated blood sugar.
3. 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.)

Hi, Macophile, and welcome. I'm not sure if I just missed it or if you confirmed that you never had an MRI of the brain. Please let us know. I hope that's NOT the case but if it is, I am stunned!

Hey Macophile,

Was reading your thread and have a question for you. Can you please elaborate on your irregular periods. How are they irregular?

Ok, Lets see. When I started they didn't occur but every 6 months or so. Then I had some that lasted for around 4 months (without stopping... it was small amounts everyday, but still. and there would be like 1-3 months in between series...) Then I had one that lasted 3 days But I was bleeding so much I went to the ER. (They sent me home, but told me to come back if it didn't stop) then I had another one that was lasting for a while so I went to my regular Dr....and she put me on low dose birth control pills to regulate them.

Ok here's an off the track thought.

Has anyone mentioned Polycystic Ovary Syndrome.

It can mess with your hormones and once hormones are outta whack well its hard to get them back. And hormones are like a three legged stool with Adrenal, Thyroid and Sex HOrmones and they are all intereconnected and the stool gets lopsided and falls down then they are not in balance.

But PCOS is also connected to insulin resistance and sugar problems that as we know are connected to neuropathy.

And while I doubt this has a connection to you since you are now on birth control pills and likely not having bleeding problems, have yu had your iron and ferritn checked? Low iron and ferritin can also be connected to neuropathy. And low iron affects thyroid synthesis and an out of whack thyroid can also minic neuropathy problems.

LIke I said though since you are on Birth contro pills its unlikley that you are low in iron unless you have trouble absorbing it which can be connected to gastro issues. Howver the low dose pills would tend to make the insulsin and sugar problems worse.

Sorry thats all the throughts I have.

I hope you get to the bottom of it.

They have indeed mentioned PCOS. I have had many tests for it, but apparently I do not meet enough of the qualifications to be diagnosed with it.

That is interesting about the iron. I will have to double check, but I am pretty sure they have tested that numerous times, and my levels are normal. If I find they havent, I will make sure they will. Thank you so much for your thoughts.

Oh, heavens. I didn't mean for it to sound that way. I have, by this time, had no less than 4 MRI's of my Brain. (The last one took place 2 days ago.) And I am scheduled to have one every year for the next 10 years.
(And thanks for the welcome, and the mistake catch!)