Hi, I am wondering since you have a positive ANA you gastrointestinal problems may be Crohn's disease. Crohn's is an autoimmune disease. I am wondering why you had thyroid surgery. Why was there no need for thyroid medication. If it has been a year since the blood work request that the doctor repeat them all. See what your A1C comes back as. Diabetes is a cause of neuropathy. Also, if your ferritin remains low it could be the cause of the feeling cold all the time. Low iron can cause that. Without going into detail low iron can also cause low levels of O2 in the blood which can cause lightheadedness. As for medications, I think is going to depend on how the tests come back. I take Cymbalta and have gotten some very good results with that. Good Luck and Welcome to the site!

Thank you, hopeful! Yes, I guess Crohn's is a possibility. I don't have any stomach pain though... just the seemingly random bouts of diarrhea. And every time I've been tested for inflammatory markers they have been very low - I think they'd be high if I had a Crohn's flare up? I don't know a lot about it, except that my neighbour has it along with colitis and is in a lot of pain.

I detailed my thyroid history in my response to Mrs.D (above). It is possible that my thyroid is playing a role.

I have had testing for diabetes - a 3-hour glucose tolerance test. I passed so the doctor said I don't have diabetes. However I still have a high A1c. My dad is diabetic so I decided to test my own BG for a couple weeks to see what was going on. I have normal fasting levels, but I do rise up very high after meals (above 200 sometimes which is not supposed to ever happen in non-diabetics). I wonder if it's possible for someone with impaired glucose tolerance to develop neuropathy before actually developing diabetes.

Yes, I should ask about the ferritin. I'm told I'm not anemic because my hemoglobin is fine, yet the ferritin remains low (around 20) despite a year of supplementation. I'll ask my doctor.

Glad to hear that Cymbalta works for you!

Yes, impaired glucose tolerance precedes diabetes, and that is when PN can start:

http://neurotalk.psychcentral.com/thread158275.html

Carcinoid is a slow growing tumor of the GI tract. It periodically secretes high levels of serotonin, which can affect mood, and motility --most commonly causes diarrhea.

http://www.carcinoid.org/

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001387/

Doctors don't think of it right away... so it is up to patients to
ask for testing for it for any complex hard to diagnose symptoms, some of which you have. Not everyone has every symptom and that makes it more difficult.

A high A1C with normal fasting, suggests, high carb large meals.
So cutting back on sugars and starches and eating smaller portions may help that at this point. The A1C typically suggests high spikes after eating, which level out later, and may become actual low blood sugars. This swinging is what leads to the PN symptoms.

You might look at the gluten free diet just in case...the diarrhea is due to that. Going GF for 3 months and feeling better may be your answer. Some testing is not really accurate for some people.

Thank you again! I will read more about carcinoid and see if it looks like something I should suggest to my doctor.

I was considering going gluten free for a few months to see if it would make a difference. I will also be seeing a gastroenterologist in a couple months so I can ask about testing for celiac disease. I know some people without celiac disease feel better off gluten too.

I've heard that fasting blood glucose is the last to go up when you have IGT and are developing diabetes. Yes, I could certainly look at reducing carbs/sugar. My portion sizes are good, I think. I don't have a big appetite and I'm very thin so cutting down calories and portion size probably isn't necessary. But changing what I eat is certainly worthwhile. I have a relatively good diet (vegetarian plus fish, so I eat lots of veggies and fruit, nuts and seeds, beans and legumes, tofu, whole grains, fish, and some dairy) but I do often end up eating poorly if I'm out of the house and need to grab something quickly - then it's usually white flour and sugar in the form of a muffin or scone or something.

Since you mentioned "intense dryness of the sinuses", I'm curious if you have dry eyes or mouth? Sjogren's is an autoimmune disease that is not only common to include neuropathy, but 40% of patients have negative blood work. Have they run SSA & SSB for Sjogren's? If you have dry eyes or mouth, I would request they run these labs. If they are negative, then you might request a lip biopsy.

Also, did they diagnose neuropathy just from temperature & tuning fork? Did they do a skin biopsy for small fiber neuropathy? If not, it might be worth asking for.

BTW, iron deficiency anemia is also common with autoimmune disease. There are options to increase ferritin if supplements are not working. One is Ferrlecit (iron) by IV...if your doctor thinks it's bad enough. Do you know your ferritin level?

Thank you for your thoughts. I don't have dryness anywhere other than my nose. Occasionally my eyes too, but I just attribute that to wearing contact lenses - I've had that for years. I was tested for the Sjogren's antibodies and was negative (twice) though many of symptoms fit and I know it's possible to be seronegative.

Yes, he did diagnose neuropathy just from the temperature and tuning fork. I will ask the new neurologist if he thinks a biopsy would be advisable.

My ferritin is always about 20. I think I've seen it in the 18-22 range whenever it's been tested. The neurologist said it's not horribly low, but low enough to cause some symptoms and it would be a good idea to try to increase it. He said he likes to see a minimum of 45 and would rather it be over 65.

whitechinacat, Maybe you will not see this, but that sounds scary. I hope you get something figured out soon. Maybe this is some kind of food sensitivity. I know I keep mentioning this book, but it is a good one--Foods That Fight Pain has some great info on foods that trigger various ailments such as migraines, joint pain, digestive problems, & fibromyalgia. For example he lists the common triggers for migraine, in order of importance: dairy products, chocolate, eggs, citrus fruits, meat, wheat (bread, pasta, etc.), nuts, tomatoes, onions, corn, apples, bananas.
Ron

Well, the new neurologist had a cancellation today so I got to see him right away.

It was a good appointment. I am used to walking away from appointments with my family doctor or rheumatologist feeling that I've learned nothing and have no plan for moving forward. It's frustrating to say the least. The neurologist listened to my history and did a neuro exam. The only abnormality there is that my knee reflexes are quite uneven, but he said he wasn't sure why. He said that my story is quite complex and he can't think of any particular neurological disease that would account for my symptoms, but he is willing to investigate and try to help me feel better. That's a wonderful thing to hear! He admitted that it would be sort of a fishing expedition, but he was willing to cast a wide net and see what he could find.

I am having my MRI of brain and spine repeated (it's been a year) to see if there have been any changes. Depending what it looks like he may also redo the NCV/EMG at a later point. He also wants me to do a sleep study and to wear a holter monitor (because of the palpitations/fainting).

I am going to try Lyrica as well starting at 75 mg at bedtime and then 75mg twice a day. I am quite interested to see if it will make a difference.

I'm just relieved to have some direction here.

Hi My name is Danielle and i know it was last year that you wrote this blog but i was wondering if you can help me. My daughter who is 14years old has been experiencing the same symptoms that you describe. Unfortunately it has got so bad she now has a feeding tube and often needs to use a wheel chair to move around. She also has a nodule on right side of thyroid too that has not as yet been removed.
Reading your post i am wondering if you have any more answers to your condition or if you have found out anything that may help with your symptoms. My daughter is using a drug called mestinon which is the only thing that has given a bit of relief. I would really appreciate it if you could email me and give me an update on your progress.
I hope you are doing well and look forward to hearing from you.
Danielle

Danielle, whitechinacat hasnt been here since may of 2012. try sending her a message, maybe she will get notification if her email is the same.