Have Mayo Clinic appointment
 

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. :eek: 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. :o

fanfaire
:eek:

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

Hooray! Followed by Hooray????
 

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? :hug::hug:'s - j

Yes
 

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

Only the latest from each of them
 

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
 

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

Yah right!
 

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.

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. :D:D:D

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. :rolleyes:

fanfaire
:cool:

I think it's possible you will see her
 

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! :)

mayo appointment
 

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.

Megan
 

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 :rolleyes:) 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
:cool:

Did
 

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 :D Sue

Wonderful
 

That you got the lip biopsy slides. It may save you from having another one. Mayo doesn't take anyone's word on the reports.

Now get serious about those charts of Liza Jane's. And don't forget to take the names of the two doctor's I told you about. Put them in with the things you are taking.

Billye

You should already have a patient number and contact; I'd phone and ASK for the doctors Billye is suggesting. NOW! You don't want to wait because this is about the primary doctor there, not a consulting person. The primary gets set up in advance, and may set up other appts for you in advance.

Blog about Mayo
 

Fanfaire,
This is the blog I did during the trip to Mayo. There is a lot of very valuable info in it. I read it again today and you need some of this info. I know it's long but there is a lot of info about Mayo and particularly seronegative Sjogren's. http://neurotalk.psychcentral.com/sh...ght=snow+storm

Billye