Thanks for ALL the replies, including the PMs (yes, I finally remembered to check those). I'm thinking the photo should have both the rose AND the bubble bath for this special occasion.

I like the idea of dividers for specialties, especially since they might send me to other departments. I've had docs in the past who insisted on me bringing in every single medical record, and then they didn't even look at them. When I lived in Denver, I used to bring in summaries for each specialist of what had happened with my health since my last visit; I could probably look those up to help with a chronology.

Alas, I have no laptop, just an ailing six year old Mac with a tower drive. But if I get my stuff together before I leave for Minnesota, I should be ok. Luckily, I live in South Dakota, so I will only have to travel about 250 miles to get to Rochester.

The rheumatologist I will be seeing is Thomas Osborn, a connective tissue disorder specialist. Even if I end up not liking him personally, I'm mainly after someone who is knowledgeable or who can send me to someone that is. The main problem I've had in Sioux Falls is that the rheumatologists were unfamiliar with recent discoveries regarding autoimmune disease, and they were too arrogant to admit they hadn't read up on Sjogren's.

I will try mentioning Dr. Mauermann by name and see if she is available for a neuro consult. Even if I don't end up seeing her, I definitely need some relevant tests run. It might be useful to know if the gastroparesis, the neuropathy, the periodic limb movement disorder, the cognitive dysfunction and some of the other stuff are all from one cause or if it's just coincidence that I have them all.

Being sick is a full time job.

fanfaire

Try asking your rheumie if he will tell her that you have a "suspected case of seronegative Sjogren's Syndrome with neurological complications". I think he will have trouble holding her back from seeing you. She is doing a book and a study of this particular disease and complication. And if you can get Dr. Amy Fox-Orenstein as a gastro, you will pretty much have my team. They should be familiar with every aspect of the disease you've described.

I'll email you first thing tomorrow.

Billye

I agree with Billye--I really think you should push for the sjogren's doc. Even if it changes the date by a day or makes them move things around. You've got to see the person with the expertise in your area, and even though they are all supposed to be good, they all do not have the same interests and it matters.

I'd suggest renting a laptop. I did. You can google on this to find a good buy. Or, a new one--I hear they've gotten tres cheap.

Just a question regarding Liza Jane's charts!

Have people found that doctors accept what you have written on the charts or do they like to see the original pathology results direct from the reports? I know it is more cumbersome to peruse pages and pages of results but my feeling would be that there would be some credibility issues with patient summarised charts, from the doctors perspective.

Interested to know!

was born in Rochster and left after hs. There are tons of housing accomodations available with kitchens, the clinic should be able to help you with that... I am sure they have a list of what's available.

I agree, the clinic should have sent you a brochure with housing that is available, description and price. But I'm sending you my list. Keep in mind that my list is a year old.

Billye

My doctors are pleased as anything, and I don't think it would cross their mind that I would have possibly faked it. They only care about originals of mri or emg reports. I'd suggest giving the doctor the spreadsheet, and offering him the originals, if he'd like them. That would get his confidence. And then he'd be grateful for the ease.

Agree with Liza Jane - the spreadsheets are great - and also brief medical history or update (max one to one and half pages) - when I see a new doc I usually take the history that has current conditions, history of illnesses and surgeries, verified medical conditions, brief social history, very brief family med history - and an attached meds list with my other docs... this saves them lots of time and they usually just dictate it right into my chart (I think this may be on Liza Jane's site?) - and then take a few relevant tests for their speciality or a page of the spreadsheet that may apply to them... however, for GP or of course a Mayo situation - full spreadsheets are great and always note on my brief history too that all test/labs results I have full copies off if they want them....

Always get a thank you.....

Got two important things done. First, I managed to track down the location of the slides of my lip biopsy. They are going to send them to Mayo.

Second, I secured accommodations. I'll be going with Extended Stay because they have semi-full kitchens (2 burner stovetop, microwave, fridge with freezer, basic cookware and utensils). They have a special patient rate, a free shuttle to Mayo, and a laundry room.

One reason I tend to agree with the summaries is that the standard patient histories you're asked to fill out at the doctor's office don't leave enough room for more than a few ailments or medications. I usually end up writing "see list" on there anyway. So why not bring something pre-typed (my handwriting is terrible ) that they can put right in my chart?

Now I just need to make some serious progress on those spreadsheets.

Thank for everyone's help and support.

fanfaire

you decide if you could rent,or use a freinds laptop...You will be very busy
and tired,but i'm nosy...I will never forget Billye's trip,it was better than
watching Grey's Anatomy...It will be awfull cold but your use to that,and
your so lucky you found your Lip Biopsy...All i can remember about that
test was i couldn't drink for a long time without drooling,oh the things they
do to us,and some nitwit puts you through all off this..I'm making Bob
cross his fingers and toes for you,well I don't mean making him,he would
do it on his own..I have read him about your trip,he Bob and I wish you
the best,the very best. What i remember is it's big but they get you around
honest Sue