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.)

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.

Ok, Look, I am not "poo-poo"ing anything. I Have been worked up for both types of diabetes by an Endocrinologist, and he says I do not fully meet the criteria for Diabetes type 2. Type 1 I def. do not have. It is because my Dr. told me I cannot be classified as a diabetic that I am saying I am NOT diabetic. This I think is reasonable. I am not just walking away either. I am being closely monitored by him.
And am closely monitored by other doctors for my other problems.

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

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.

Hi. Welcome to the boards though I am sorry you are having such a horrible time. I am not going to go through my story but I am a "weird" case too. I am older then you but when this happened to me 28. Anyhow been to many docs and many top hospitals with little answers. I forgot what kind of testing such as mri or emg/nc but if you have not I would push getting those. Also just because you seem to young to have an issue doesn't mean it can't happen. I am not trying to scare you but I know for myself things that have happened mostly to older people have happened to me. It may be very rare but still something I think docs need to look into though many don't. Also are you bringing your mom or dad to any apts? I think it can help cause I sometimes see a difference in how I have been treated. Nothing like an angry parent to get things done. Hang in there and if you need anything or just want an email buddy feel free. I know how scary and lonely this is.

Hi Brian,
Thanks for answering me. I did have a 4 hr. glucose tolerance test that said I was "barely in the range" of pre-diabetes. I then did a 2 Hr. glucose tolerance test a year or so later that said I was completely normal. And I agree, it might be the cause, or part of the cause, but because of all the other unexplained stuff, I want to push for other things too.

As for exercise, it is hard as the foot problems keeps me from moving around much, but I try to do as much as I can. As for diet, I have always eaten well, which is something that annoys me. It doesn't seem fair that I have this problem when the people who Chug nothing but soda and eat tons of sugar/candy are perfectly fine. (I know it's possible, but it's just a gripe of mine. Sorry. )

I have to admit I have not had a colonoscopy to rule out inflammatory bowel disease. My dr. did use the process of elimination but did not take that final step.

I am pretty sure I had the urine test for Crohn's. (negitive) The doc's looked at that, as I have the erythema nodosum and peripheral neuropathy, as well as other auto-immune problems... they also said I had the right body shape...

To my knowledge there is no urine test for Crohn's disease. If that were so, then things like the capsule endoscopy [camera pill] to examine the small bowel would never had to be invented. If you have been having on and off gut issues for some time, you owe it to yourself to get a colonoscopy to check for inflammatory bowel disease. I let them tell me for 25 years that I had IBS. I was so sick of complaining about my bowel issues to the docs I stopped complaining. Then when all then other issues popped up, neuropathy, severe arthritis, EN, avascular necrosis of the hips - all caused by untreated Crohn's - my gut issues could no longer be ignored. I wish I had been more insistent.