replied in private email about the scheduling issue.

About 3 weeks left before we leave for Mayo. I've bought winter fuzzies to take with me, new winter boots (found some that fit), and started training the dog sitter. She came the first day and was introduced to the pups on neutral territory (the living room) she started talking to them and after they seemed willing to approach her, she offered them a treat apiece. Wonder of Wonders, they did not eat her!!! They barked a little then followed my husband back into their part of the house. It went so much better than I expected. Now we will see what happens when she walks with him back to their part of the house. I've decided not to say anything. She is very good with animals and not afraid of them, so I think it will work out.

I think all the details are worked out.I've given Liza Jane my iteniary and my cell phone no. so you can all keep up with me. I will have a laptop with me so I will be able to check in and let you all know what is going on and ask questions if I need to.

I called Mayo this week and spoke to the appointment desk in neurology. They told me that the doctor's secretary was handling this case. And transferred me to her. She said he had me scheduled for 3 full days of testing and used the term, 'you are booked solid". I asked her what tests. She started rattling off the tests and I recognized most of them. Some I didn't recognize. Oh and they are looking at my eyes too. And she said other tests may come up as we see what is going on with your tests.

So right now it looks like I don't know how long we will be there. But I'll be in touch with LizaJane at least and try to post on the board if I am able to.
But I'm thinking I may need some Dove bars to make this trip. Oh and some peanut butter cups and yes LizaJane, maybe an apple flavored martini. You only live once. I figure I better start eating gluten since that is one of the tests that will be done.

It is just going too fast....so much to do.
Love to all,
Billye

Good luck with trip and all of the testing, Billye.

A gluten challenge is usually longer than three weeks, but the amount of gluten does seem to make a difference by some studies that I have read....so load up big time if you want to increase your chances of something showing up.

There was a young boy with gluten ataxia put on a gluten challenge recently (from our gs/cd forum) , and that was just 3 weeks... but they also looked for antibodies in the spinal fluid. He didn't have villi damage, but got a diagnosis of "neurological celiac disease", which is a great sign that the definition is broadening to include non-gut manifestations.
http://brain.hastypastry.net/forums/...ead.php?t=2888

In any case, back to the challenge, if results are negative after three weeks, the challenge should be continued on...checked again at 3 months, 6 months, and even at a year. Of course, one might consider increased symptoms as a positive challenge, even if the antibody tests/biopsy remained negative, but that is where the divergence of opinion comes into play.

In any case, GOOD LUCK WITH EVERYTHING if I don't cross paths with you again before you go!!!!

Cara

Billye~
Mayo has wheelchairs there and also escorts that will take you to your appointments if you need one. You just need to request one when you get there. They won't stay with you the whole day, but after each appointment the area where you are will request an escort and one will come to push you to your next appointment.

If you don't feel you need an escort, always go to subway level to find which building you need to be in before you get into an elevator. The subway level is where everything is marked and you can find your building. There are volunteers standing by the elevators (in blue shirts) to direct people also. Once you follow the signs and find your building, then take that elevator up to the floor you need. There's only one patient/visitor cafeteria and that's on the subway level also.

All hotels are handicapped accessible, have free parking and free shuttle service to Mayo, but the drivers do appreciate a tip.(a buck or two) They drop you off at the front door and pick you up at the front door at certain times. Your hotel will give you a schedule and the Mayo doorman/woman will announce every arriving shuttle. (Shuttle in the far lane going to Best Western Soldiers Field, Holiday Inn, Micortel.....)

I always stay at the Microtel because it's $47.00/night for a single, it's VERY clean, their shuttle starts at 6am, (some don't start till 7am) and the breakfast is great. The Kahler Hotel is connected to Mayo by the subway and is the most expensive hotel, but I hear it is very nice. It is right across the street as someone told you, if you'd want to walk outside you can also.

I live about 2 hours from Rochester and go there quite frequently--lately anyway. If I can answer any questions I'll be more than happy to. Good luck on your trip if I don't talk to you before.
Hugs,
Jan

I grew up in a city about 40 miles from Rochester. One frigid Sunday afternoon when I was about 16, football was over and it was too cold to go skating (indoor rink - ha!), so a car full of us headed to Rochester in search of something, well, different to do. After cruising the city, we ended up at St. Mary's hospital - connected to the Mayo Clinic. We found the underground tunnels that lead from one building to another and several wheelchairs. Wheelchairs + teenagers - supervision = wheelchair races. We must have spent an hour or more playing our new sport and we planned to do it again. We never did as teens but I know a few of us who could do it today with our own chairs! So this is how I know Mayo does offer wheelchairs and, as Jan said, someone to push to your appointment(s).

I've not been back to Rochester for about 10 yrs. when my father had his open heart surgery there. We stayed at the Best Western Apache which I think has changed to a Ramada. At that time, it was very nice but not real close to Mayo.

Billye, please make sure to bring warm clothing as it is bone chilling cold in MN in Dec. It takes forever for cars to warm up so allow extra travel time and if you can, park in lots that are somewhat enclosed. Also, make sure your car is tuned up well for the cold and have a good battery.

If you have heard all of this before, I apologize. But I don't want you stranded and frozen waiting for a tow truck to come to your rescue.

Oh, and Janster is probably the best person here to answer any question about Mayo since she's been going there herself for quite some time.

That's it for now - good luck in packing and don't get caught having wheelchair races in the tunnels!!!

nancy-h

Thanks to all of you for your encouragement and the information. You have given me some really useful info. I thought I had asked about everything but Cara, I didn't know that I needed to be eating gluten now. I'll start eating everything I've wanted for a long time. It seems almost a sin to do it tho after being gluten free for a year.

Jan, the instructions about using the basement to find where we are going will probably come in handy when I get lost as I usually do when we are in strange places (no sense of direction). My husband could be dropped in the middle of a desert and still find his way, me...I'd be one of those walking in a circle for the rest of my life.

Nancy, I hadn't thought about emergency things for the car and your post reminded me of some things. Thanks.

Billye

Billye,

Well, this is a VERY DEBATABLE point, and I should have expanded my answer!!!! Many people DO REFUSE a gluten challenge especially if they feel they have seen any progress at all. Some people have also reported 'autoimmune flares' with a gluten challenge, but these sort of reports are anecdotal.

The thing you need to know is that you must be consuming gluten for any of the antibody tests to show accurate, and generally a gluten challenge is longer...so as mentioned, even if the antibody tests were negative after three weeks of challenge... the length of the challenge should be extended. The other part of the picture... is that you can be adversely affected by gluten WITHOUT EVER TESTING positive for celiac disease, and there are plenty of people who feel they do so much better without gluten who had negative bloodwork. SO, you could do the challenge, test negative, but still be better off without gluten in your diet.

Lmb3 recently made that tough decision to gluten challenge her son for a diagnosis. His ataxia worsened while back on gluten, and the lab tests and biopsy still did not show any clear evidence of Celiac Disease. However, they still arrived at the diagnosis...perhaps based on the fact that he worsened while on gluten, and they couldn't find any other cause, and the mom has biopsy proven celiac disease, and he carries the genetic predisposition. But..his lab results didn't prove it.

Do you think you've had any improvements from a gluten free diet after a year? If Yes, then I'd really question doing the challenge, and perhaps accept your improvements on face value. Just know that your blood antibody tests are expected to be negative if you are on a gluten free diet (and if by chance they would be positive, it would indicate some hidden gluten is still sneaking past). [Any genetic (HLA) testing they might do is independent of diet.]

If after a year you aren't sure you've seen any benefit from a gluten free diet, maybe a challenge is in order, especially if the blood tests weren't done the first time around. Sometimes people have such obvious symptoms in the first days/week of a challenge that they stop it. Tough call!

Cara

Cara, I've been gluten free for about a year now. And I have actually worsened during that time. The reason I decided to do it is not the neuropathy, I had tried the gluten free diet the first year of the neuropathy, but actually the rheumatoid type arthritis. I just figured it might help some of the inflammation caused by the RA. But I can't say it has helped either of the diseases. I have gotten more and more crippled and the neuropathy has now moved into my hands also. So I can't in all honesty say that the gluten free diet has helped me. I'm just afraid to not do it in the off chance that it is helping some. It is still a tough call for me because to eat gluten seems like eating poison after not eating it for so long.

Billye

Hi Hon.

Just wanted to include my warm hugs and fuzzies and all those what-nots!!!

Hope your trip brings you many answers and that you feel better.

All the best.

Melody

Like those of 'Uncle Travelling Matt' from the 'Muppet Show'. Snippets of life being, essentially, a human test animal? With the right outlook, all the seriousness of the testing, the processes of being tested and the people you meet along the way....well, you must encounter some peculiar things.

Of course, the ultimate bonus would be a few ANSWERS along the way! Something I truly hope you find.

Heaps of pain free moments during your excursion and definitely many more after - j