Hope you are able to get a good night's rest and will be able to tell us a lot about what you found out afterwards...

You certainly are a brave soul, Billye. I don't think I could have done that not being able to sit or lie down like that... And I imagine the schedule you had to keep to see docs and have all of that testing done was NOT easy...

Glad you are home,
Cathie

Just another thats glad to see you got home safely, i hope that you can have a good rest, now that your " home sweet home " at last
take care,
Brian

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

WOW! I'm so happy you were able to get so many specific things out of this grueling trip. Whew! I was really feeling guilty for having pushed so hard for this seeing how much it was wiping you out. I can let that go now.

I'm happy to hear you sound so much more hopeful.

You sound positive, and the test results are positive. This then is a goal, you can work for. (and PT will be WORK! believe ME).

Let me know what therapy you get. I had both IFc and ultrasound, and they worked well for me. After 3 sessions I had significant reduction in pain.

Also I hope you consider Whey Protein shakes..Like the ones Alan is now
using. They are easy to drink, you can put your nutrients into them..Like flax oil, fresh fruit and whip it up and no chewing necessary. This will give you
amino acids (no digestion needed) and fats, and potassium from the fruit.
People will often DRINK when they won't eat (appetite wise) and this is an easy way to get nutrition.

It is really critical that you found that H. pylori. Given you use that Indocin!
What a risk that was! Whew...gives me the goosebumps!

So I am very pleased for you..that there is light coming at the end of a long long tunnel!

Good goin', girl!

WOW!!WOW! NOW?

Yep it all adds up to one SUPER SILVERLADY!

All of that PLUS hints of PROGRESS! Who could ask for anything more?

BTW...pardon my asking, but: How long did the chocolates last? A week, a day, or about 30 minutes?

I am no longer perched on the edge of my chair in all the heaps of 'What If's'!

May pain-free moments become minutes, then hours and days! - j

Billye . . . Wow! . . I have no doubt that all the prep work really paid off and was absolutely vital in getting such detailed findings and recommendations. And to think how much easier it will be to get other things from your local docs. As your clinical picture improves, you will both tolerate and benefit from things that are not in the picture just yet.

I know that others will be inspired by your experience. But the real keys were doing all the right groundwork, not only collecting all the info and so forth, but in using the right support, including this board. Having LJ on your case didn't hurt either - I am very touched when I think about all she did.

If you ever want to use speech recognition to make it easier on the computer, I would be glad to help. I would imagine you are a little overwhelmed right now - so no need to respond. If the time is ever right, just let me know.

rfinney

and some pretty flowers. Hope you rest up!!!

This is just wonderful news to hear... I will write more via email.
Cathie

You are all such wonderful people.

Mrs. D. I had forgotten about the Whey Protein Shakes. Great idea! I was doing this for awhile when this first started and then I stopped for some reason. I'll start it again. I know there is a thread with Melody's recipe for Alan's shake. I remember it sounded good, so I'll search it out.

Dahlek, chocolates just never last long enough. Seriously, it will take a while to eat THIS supply of chocolate. She outdid herself.

Finney, thanks for your offer of the speech recognition computer help. I will remember that and will be sure to call on you if this gets worse. But...I am mentally convinced it will improve as I try to improve my diet and vitamin supply. All the same, I'm glad to know it is available.

Melody, I needed that hug BAD. And the flowers are beautiful. Thanks so much.

Hi Cathie, I will await your email. Talk to you later.

Love,
Billye