This will be long and a little sketchy but I know so many of you are following this thread.

Diagnosis: small fiber sensory neuropathy from Sjogrens Syndrome. Basically an autoimmune disease.

They would not recommend IVIG at this point. They believe the neuropathy is stable and might even start some healing because of the meds they have me on. (methotrexate and Humira) While I hated the mouth biopsy, it gave us the first evidence that possibly the disease is healing some. They told me that this biopsy was not as bad as the first biopsy. Dr. Mauermann (neuro) said that she believes that when the disease first attacked my body it started all of the neuropathy and the damage was done. Most of you will remember how rapidly it advanced. Then we started treating with methotrexate and finally the Humira and stopped the advance of the neuropathy. I am damaged, but hopefully not beyond repair to some extent. She is hopeful that I am starting to heal since the lip biopsy shows positive changes.

I am to return to see her in one year. And my own neuro here has the ammunition to start IVIG if she sees any futher deterioration. My little neuro is wonderful and she will now know what to do.

Dr.Mauerman also did several other things. She sent me to a GI specialist, Dr. Foxx-Orentstein. Also to the eye specialist, dermatology specialist, pain specialist, rheumatologists and I hope I didn't leave anything out.

Dr. Foxx-Orenstein ran lots of tests. She also sent me to a dietition. We discovered I was slowly starving to death. (have lost from 185 to 130 lbs without trying) The weight lost is steady and not being noticed by any of the other doctors here. Seems the mouth problems have caused me to not want to eat. And when I do eat, I don't eat much. So we learned how to supplement my diet and how to prepare things I can eat. She wants me to have 1500 calories a day just to maintain the weight I have. I probably have about 700-900 calories a day on good days.

Then the tests showed that I have a silent gastric ulcer. Have no pain with it (yet) and I am infected with H.pylori. So Dr. Foxx Orenstein is treating me for that.

She also determined that I have nerve loss in the bowel, intestines, and colon. They function very slowly. And I have a disease that causes the pelvic floor not to work right. Seems the pelvic floor muscles are locked in a spasm that is causing the colon not to empty. So I am to go back to Mayo for two weeks to have pelvic floor theraphy. This sounds horrible, but I was assured the therapists are very professional and well trained.

So the GI specialist has discovered several things that are causing me severe problems and has solutions for them. I will see her after the pelvic floor theraphy.

The pain specialist believes the pain while sitting is at least partly soft tissue damage and has sent us home with a prescription for physical theraphy to repair that damage. We are hopeful it will make me more comfortable.

The eye doctor was not able to give me any thing or do anything that will help the serious dry eye situation. But he says there is tremendous research being done in this field now. So maybe someday... But I did get a precious new pair of eyeglasses. The local eye doctor had little to offer in the safety eyeglasses with the side shields. I wear those because they help protect my eyes from wind, dust, etc. The ones I have now are heavy and clunky and hurt my nose and ears. The optical store at Mayo had lots and lots of the safety type glasses and we bought a pair of frames (that actually fit my small face) to have lens put in them here at home. And for any of you who need them, they make a great pair of moisture chamber eyeglasses. They custom make them and I'll be glad to answer questions on this subject if anyone is interested.

The rheumatologist is not changing anything but will be willing to start stronger meds if the Sjogrens changes. He thinks the damage is done and is stable too. So he is following this and supporting my local rheumatologist who is very willing to learn.

Don't think I've mentioned this to all of you. My fingernails are turning loose from the fingertips. They are red and sore and it hurts to type, and anything where I have to use them. The dermatologist was unable to tell me what is wrong with my fingertips and fingernails. He actually called in one of the senior dermatologists and one of the Fellows in Dermatology. They decided the damage may be sensory neuropathy complicated by poor and lacking diet. So maybe the nails will improve. Hope so, didn't realize how much you use these things.

I probably left out a lot, but got to stop, tired and lots to do. Ask any questions you need to. I'll try to answer.

Was the trip worth it?......Yes! There were a number of things found and started that may make my life more comfortable. And the neuro and rheumatologist here will now know for sure what is going on with my body.

I want to extend my thanks to Liza Jane for her invaluable help and wonderful chocolates!! We came back to the hotel after a day of horrible tiring tests and found a box sitting on the desk in our room. Georgeous, wonderful, rich, dark chocolate. We both opened it and immediately popped a piece into his mouth. Then my husband popped a piece into my mouth. He winked at me and it just brightened up that horrible day so much. I can't thank her enough. We also have enough chocolate to last me a long time.

Also want to extend my thanks to all of you who did so much research, those who sent me moral support and prayers. And to any one I left out in the above. Many, many thanks. Could not have done this without you.

Love,
Billye