It's scheduled for December 3rd. My husband will have to take me because it's at least a 4 hour drive each way and I can't drive for more than an hour continuously (not safely, anyway). He'll be missing time from work unpaid, not fun.

I'll be starting in the rheumatology department because my main referral is from my old rheumatologist in Denver. I will likely be sent to neurology next to sort out the neuropathy/cognitive/periodic limb movement disorder problems. I've never been to a neurologist who knew much about Sjogren's before, so I expect there will be all sorts of new tests done there.

The paperwork I was sent said that I will probably be there between three and six business days. So I will have to book a place to stay. I hope to find something that has a kitchenette as I have too many dietary restrictions to eat out much.

I am fighting with my medical insurance about coverage. They have denied pre-approval because they want me to keeping going to the incompetent Sioux Falls rheumatologists. I need to put together an appeal even though it is likely to be turned down.

I have been sorting through my 10 years of medical records gathering my various scattered labs and test results so I can put them into a single summary. I'm using Liza Jane's lab worksheets as a starting point. I do already possess the info, but it's buried within my copies of the records which were originally filed by doctor.

I also need to scan the records which are relevant, but I'm having trouble figuring out which ones those would be as those files are several inches thick. Is it worse to bring in too much information, or not enough? Since my ailments are systemic, I've been to ENTs, gastroenterologists, endocrinologists, podiatrists, physiatrists, opthalmologists, pain specialists and sleep specialists in addition to rheumatologists and neurologists.

I'm afraid of very little in life, but this pending appointment really freaks me out. My entire financial future could hinge upon whatever they do or do not find. It's a horrible feeling, half-hoping my tests will come back abnormal so my LTD company will have to admit I have a legitimate physical illness, and half-hoping I'm actually well enough to go back to work someday.

If nothing else, I hope I will finally get a comprehensive picture of what's going on with my health. I've got bits and pieces from various medical specialities, but no one has really been able to piece it all together. I should at least be an interesting patient.

fanfaire

Well I'm glad you got the apt. I'm sorry you have so many worries. Its hard to stay in the moment I know but hopefully this will give you answers and relief. The insurance issue is a struggle I do know. Are you on disability or could you start that process as well? I know when I went to Cleveland Clinic they had specials at hotels for people who were there for the hospital so you may want to ask them about the same. It was key for me too to have the fridge so on. After a long day at the hospital you just want to crash too so having some stuff to eat is imporant. Keep us updated

I suggest that you query specifically about 'accomodations' to Silverlady/Billye and then maybe post on the general Info board and get others input about their experiences...One thing about getting STAR doc opinions is that the 'quacks' have a LOT harder time to over-ride true medical opinions...As Bob B [AKA Nide44] says 'someone always has to be at the bottom of the class?'
Humble them, slay them with FACTS, then as any good dragon slayer would say and do....KILL them. I am not a violent person by any nature, but there are TIMES...such as this...when...Well, no one really wants to know - you know?

Hang in there and do the dragon slayer thing...as best you can...even flat on your back you can knock a few of the quackers over at least? 's - j

Now you cooking,it's a good well great place to go. Plan on being there
sometimes a little longer,but your not to far,like Mo. and Texas. But in pain going across the street hurts...I'm just so darn happy for ya,hmmm never
thought i would be happy for someone going to the hospital.... Oh and put
pads and pillows in the car... Many blessings Sue

I took only the latest reports from all of the doctors. And I had to have CD's of MRI's etc. Films wouldn't do. Any abnormal tests are important. I've emailed Liza Jane and I'm hoping she's not feeling too bad to answer. But please fill out the liza jane spread sheets. They are so very important.

Glenn will look at this too. And I'm hoping Mrs. D. But please do the spreadsheets and get letters from any doctors you can to help with referrals to other dept. Put your records together in a loose leaf binder divided by types of problems. Like all the neuropathy related test results in one division, and all the rheumatology test results in another. Use the yellow dividers. It will make it so much easier. I made two copies of everything. One for the doctors and one for me to keep. Keep your originals.

I found that if I wanted to see another doctor in a different dept, all I had to do was ask. But it will all hinge on whether or not the doctors had an appt. space available. If you can, try to see Dr. Michelle Mauermann in the neurology dept. She was wonderful and is familiar with seronegative Sjogren's. And be sure to see someone in the optical dept.

Do you have the slides of your lip biopsy? It might save you another one. But don't be afraid of them at Mayo. They have people who do nothing but this and are very specialized. As far as a place to stay. I'll pm you with the places I found.

Good luck and God Bless!!!! I've waited for this for you. I so hope you get an answer. I am not sure about mentioning the LTD case to them. What do the rest of you think about it?

Billye

Hi Fanaire, it makes me angry that Insurers can treat genuine cases like yours in such a manner, it sounds like your doing all the right things to debunk their decision.
I have been through similar problems with an insurance company, i got all the experts in the field to examine me and their reports made the insurance doctors look ridiculous, eg, they had an orthopedic surgeons report based on a normal xray, so i got a report off a director of orthopedic surgery at one of our major hospitals to write out his findings based on a MRI, they soon buckled at the knees and paid up, i hope this happens to you too.
good luck
Brian

Hi Fanfaire, I think you should bring as compact a packet as possible. They all love the spreadsheets, and it condenses things, so I'd fill those out. Even if you do it by hand, it's a lot easier for them than going through pages of separate test reports.

For my last visit I made a small looseleaf, presentation type. On top was a bio with a summary of why I was there, what I was hoping to learn, and a photo. I know Billye brought one also, and if you like, I'm sure we can share these with you privately, so you get an outline. I can show you what my lab sheets look like, if you like; i've posted links here before to them.

I had sections labeled ENT/MRIs/Blood Tests/Gastro/Rheum

Each section had the latest report from the current doctor.

Do NOT have too much info; it will just not get looked at and make it harder for them to find the important stuff.

I have to tell you, I do not love their rheum department, and many of my pals from another board have had similar bad experiences; however, I believe Billye had a good one. You can ask for a specific doctor this far in advance, so if Billye really liked someone, I'd go there. I liked my spine guy and pain guy. If you go to the Mayo site, I think you'll find there's a rheumie who specializes in Sjogren's, and that might be a good one for you to try to see.
Th pain guy I liked was Dr Hurdle, and the spine surgeon was Dr Pichelman.
I did not care for my pn specialist, Dr Dot...something. Perhaps other people can shar their experiences on this.

Having a good bio with a timeline is key, I believe, with major summaries from the various specialties. You can ask each current specialist to write one and give it to YOU as well as Mayo. YOU can send it to them, as well as carry it.

Hope this helps. If you have specific questions, ask away. You can always bring a laptop, too.

Liza Jone, I just have to ask.....the photo? Naked with a rose between your teeth? Saucy in a bubble bath?

This is just great. I am glad you have some time between now and then to work out the suggestions that Billye and LizaJane have posted. This should make things a lot easier, since docs won't have to wade through test after test after test...

Glad you got the appointment... Boo (or worse) on your insurance company...

Cathie

and I signed a release of information so they broadcast it over the web!

Seriously, a photo is a good thing. I reminds the doctors there's a real person behind all the data, and helps them relate to you before they've met, you; helps them remember you before you walk into the room for your next appointment.