mayo clinic

[jas1223]

my doctor wants to send me to mayo to find out whats going on
has anyone had any good experince getting dx at mayo clinic

[Dolly Dimples]

  Jas, I would imagine that one would be very happy to go to the Mayo,   It is very well known, (not by me personally as I'm in the UK,)
         
It is known world- wide, so I would have no objection to going if I had the chance...
    Grasp any help that comes your way and good luck.   Let us know how you come on if you do decide to go..
                                                                                           
                                                                               Cheers Dolly 

[agreenchance]

Jas, 

Yes I have been to the Mayo Clinic in Scotsdale to confirm a diagnosis of MS a year ago.  They have an incredible organized establishment full of specialists.  I spent a week there seeing specialists and getting testing, and bills to insurance were in the excess of $10,000.  It was kind of like a Disney Land for sick people (that was how I equated it in my mind).  Quite impressive, really it was.

Why does your doc want you to go there?  What kind of specialist will you be sent to? 

My recommendations, based on my experience, would be to make sure you know what answers you want answered and be sure you get them answered while you are there.  I feel too many specialists, stirring in the pot (so to speak), can get confussing unless YOU do your research first and work with the specialist to tailor your time there.

Just to summarize my experience ... I went to an Neurologist who had a specialty in MS (because I had just been diagnosed, even though my neuro here said my symptoms sounded more reumotological).  I didn't know a thing about Sjogrens, but I had complained to him of dry eyes and mout, sore joints, and both neuros brushed it off as a side effect to the medication I had taken for MS.  I learned only later that bloodwork from an earlier GP showed elevated SSA.  Now I am back in Kansas (no I am not Dorothy, I live here) and getting a lip biopsy next week to "confirm".  This could mean I do not have MS, which means I spend a lot of money and time on a misdianosis from 2 "Specialists".  Time will tell.

I know there are good doctors out there, just wish there were more.  You could have very good luck at Mayo as long as you are clear about your visit.  All the best, Amie

[irish]

I live in MN and if I had the choice I think I would opt for the Cleveland Clinic as I am impressed with all the good things that I hear. Sounds like they have docs who specialize in Sjogrens.

I have been to the Mayo clinic and Rochester and it is hard to tell if Scottsdale, Arizona would be better. Hard to compare I would think. I do know that Rochester Mayos missed diagnosing all my autoimmune diseases around 8 years ago and told me it was all in my head.I did have some elevated blood work at the time that they dismissed. My husband and I were not happy about how things went there and I (and insurance company) have spent a lot of money there over the years.

Also, if any of you do go there make sure to call the business office and make sure your insurance is good there. Years ago they had an insurance company that would not cover any Mayo clinic bills and I haven't heard lately if this is still going on. It would be terrible to go to any big clinic and have all that testing done and then find out that your insurance would not pay there. Ouch!!!   Just my humble opinion. Irish

[Stillinlimbo]

Hello all,
I was new on here a month or so ago, been away for awhile, as are my doctors too.....mentally away. They have kind of just left me to my own, as my doc keeps saying, we're gonna do this and that, try this or that, sennd you here, yada yada yada. So, still in Limbo, is it MS, is it SJS, ALS, or something else. So, the doc has mentioned Mayo, or John Hopkins possibly. He also says he's sending me to Thomas Jefferson too, and that still hasnt happened. So, when one goes to Mayo, (I live in PA), do you room at the hospital, or do you have to pay for a hotel? Can you refer yourself?
Thanks, and hello again to all.
Cathy

[JannaLee]

I have a close friend who went to the Minnesota Mayo about a year ago and they missed her autoimmune diseases too.  She stayed for the weeklong diagnostic process. 

She was referred but I bet you can set it up yourself. 

Don't know a thing about the other Mayo's

[irish]

Generally you would be wise to have your doctor refer you and have your medical records sent to Mayo. Also, you can set your own appointment up or you can come to Rochester and fill out papers and get in line(not literally) to be soon as soon as possible. They could get you in a a day or so or you might have to wait 3-4 days or even more. Depends on how desparate you are and also the severity of your disease.

I live close to Rochester so am quite familiar with the area. You need to make reservations at a motel during your stay. Many of the motels have shuttle buses that go back and forth between motel and the clinic. The clinic and underground tunnel system is huge and beautiful. It is an expensive town so it is really good to have a motel room with a frig and microwave and also continental breakfast.

Many people with carry snacks and lunch and something to drink because of the cost. This way you only have to eat out the one meal a day. Most of the motels have the frig and microwave and many have washers and dryers, irons, etc. This town is set up to accomodate all the people who come to town to go through the clinic. The motels on the edge of town are much cheaper than the ones closer in.

If you plan to go through the clinic be prepared to hurry up and wait as sometimes you have some really long waits. Most people carry a big purse, bag, etc to carry water, reading material and many also carry their knitting,etc. Lots of handiwork gets done by people sitting and waiting. Also, parking can be a problem at the clinic. There are several parking ramps close in but you need to get there really early in the day or come early and be prepared to drive around and wait for a space. There can also be lots of walking. There are places to get wh/ch etc but if you have one of your own it is better to bring it.Irish

[irish]

Oh, I forgot to mention that John Hopkins has a doc by the name of Dr. Julius Birnbaum who has started a sjogrens clinic. He has posted on this site and you might be able to find some info if you did a search using his name. I hope I spelled it right. Irish

[Stillinlimbo]

Thanks Irish
Lots of good info, I just dont know what to do, or where to go, as I dont what I have. MS? SJS? BUt, thanks, yes, I am going to try Mayo, or John Hopkins at some point here soon.
Cathy

[Butterfly]

Hi Jas1223. My old rheumy sent me to the Mayo clinic in Minnesota in February of this year. It took about 4 months to get in. I was not able to schedule an appointment myself. They required a referral from my rheumy (even though my insurance doesn't have this requirement). I was impressed by the friendliness of the whole town. We stayed in the Hilton Garden Inn near the mayo clinic. They offered a free breakfast which was great. Thankfully my husband had some Hilton miles (from his frequent business travel) which helped keep our costs down. He also had American airline miles which helped. We were initially told that we would need to be there 5-9 business days (nothing gets done Saturday and Sunday). We stayed 5 days and tests/appointments were held daily. We did spend a lot of time waiting. I would suggest bringing something with you to do while your waiting. In some areas they have computers set up for patients and their families to use. My husband really enjoyed these. You will likely be seen by many clinics within the mayo clinic. I was seen in neurology, rheumatology, memory clinics. I had several tests done. Some of those tests included: several blood tests; a spinal tap, EEG, 4 hour memory test-to name a few. In the end, I learned no more than when I arrived. I was very disappointed. My doctor recommended the Mayo clinic because she wanted to find out if something else was going on. I wanted to go see Dr Vivino who is supposed to be a SS guru. I took my doctor's advise but wish now that I can gone somewhere that knew more about sjogren's. I didn't get the impression that Mayo was well versed in sjogren's. So far this visit cost me approx $1000 in out of pocket expenses. The final amount due to Mayo hasn't been determined. Insurance is still pending on a few charges. I hope to find a doctor that is well versed in sjogren's soon. This was my experience with the mayo clinic. Others may had a different experience. Hope this helps. Take care!

[Denise]

6 yrs ago, my symptoms started, but had no strength at all in my legs, could hardly walk , tremors, cramping and spasams , vertigo and left ear kept getting plugged.  got frustrated with Doctors here that said nothing was wrong with me.  went to mayo had doctor fax refferal.
Amazing Hospital, but ..you will need to wait for an opening if you already don't have an apt.  you may wait days / weeks to get in based on your illness.  then once you do, wow you will run to apt after apt. boom boom boom...amazing like clock work.
however for me after being poked, prodded, shocked, ex-rayed that said it was in my head to see a psych and come back in a year if symptoms were still there. oh and 10,000.00 later.    so saw a shrink, waited 3 years, meanwhile, being diagnosed with alopecia, Raynard's, eczema, stage 4 endometriosis and symptoms progressing finally went back to a Dr. rheumy here and slowing getting somewhere.  shrimer came back failed. low vitamin D, k+, and sodium, blood pressure always low.  will ask about the lip biopsy for firm diagnosis.
So Mayo, I hope it works for you as it didn't with me..my husband is considering John Hopkins also.  good luck

prayers are with you.
Denise

[JannaLee]

I googled "Best Hospitals in US" or something like that and found the (MN) Mayo was ranked 3rd best in US for Rheumatology. 
#1 is Bethesda in Baltimore, Maryland 
#2 is Cleveland Clinic.

It seems a little amazing because I know of several people whose autoimmune disease was not found by them.  I wonder if Mayo is real good after someone else makes the diagnosis?

http://health.usnews.com/sections/health/best-hospitals

Janna

[irish]

I had one of my very good doctors (who had trained for awhile at Mayo) tell me that Mayo picks their doctors from the same pool of physicians that all the other clinics pick theirs from. That sort of levels the playing field I think because many "good" doctors choose to go back "home" to practice or closer to wifes family, etc. so that does not mean that all the good docs go to one specific institution.

Mayo is good at telling people that things are all in their head from what I can tell---lots of people have told me that over the years. The only thing I can figure about that is that maybe they have good and not so good docs like any other facility. Hard to figure cause so often when docs don't know what something is they figure we are "obsessing" about our ailments. Don't we all wish!!!!!!!!

In the end we all just have to make decisions about where to go based on what we hear and what our doctors and our gut tells us. If we make the wrong choice---it won't be the first time!!!! Go Figure!!    Irish

[Stillinlimbo]

Thanks for all your replies, I went onto the John Hopkins website, and looked up Dr Julius Birnbaum, and I emailed him. And he replied! He gave me his secretaries contact info, and told me to call her and she will tell me how to send my records which he will review and then he will let me know if he'll see me as a new patient. !
Now, all I have to do is organize my piles of records!
Cathy

[JannaLee]

Cathy!

He is a wonderful person!  I find it amazing he allows such access to himself!  But he does, again and again!  He is very interested in helping people with neurological complications from Sjogren's.

I am so happy for you....he's the best there is for this!

Best to you,
Janna