Mayo Clinic

[susan]

I went to Mayo in Rochester about 15 years ago with vague symptoms of weight loss, goiter, severe g.i. pain, constant headache, recurrent sinus infections, etc. etc. Was seen in g.i. clinic, psych., ent, endo. Discharged with diagnosis of irritable bowel. Actually what I had was a large (inoperable) pituitary tumor which secretes growth hormone (acromegaly), hyperthyroidism, Sjogrens, and Stills disease. I think that I was most disappointed with the endocrine dept. Perhaps things have changed since then.......

[QueenV]

I had a horrible experience at Rochester. My internist there was positive I had an AI disease, and sent me to rheumatology right away. They found no blood evidence of having one, so they sent me on my way. Swelling in my hands and wrists cropped up and she sent me back to the rheumies. When the staff rheumy walked into the exam room he rudely asked, "what are you doing back here? I already told you that you don't have anything autoimmune." And he walked out. There were other horrible things that happened there, but I'll omit them. Hoping others have positive things to say about them.

[Port]

Gosh, I'm so surprised by the experiences you've had at Mayo clinics! I was hoping for just the opposite reviews. I'm not giving up. I have to think there is SOMEONE out there that can give me options.

[QueenV]

Port,

Do some research here and also Google "Mayo Clinic rheumagologist." You just might dig up message board conversations about an exceptional rheumy or two at Mayo. FYI: When you make your appointment you CAN ask to see a particular physician at Mayo.

Good luck!

[jmkboyer]

Port and mh--

It IS the Med Center.  My GP got me in to see Dr. James O'Dell.  It took about 6-8 weeks to get my appointment.  I had all my paperwork sent over there.  I saw a resident first and went through all my symptoms extensively.  Then Dr. O'Dell came in and said with the positive ANA I had (neg on SSA & B) that it was definitely Sjogren's.  It was both chill-inducing and anti-climactic all at the same time (especially since I'd been fighting with another rheumy in town about a diagnosis).

So I'm not sure if you can make an appt. on your own or if you need a referral but I would most definitely recommend you go see him.  He started me on plaquenil and we'll have 3-month check ups.  Let's hope all future interaction is at productive as the first!

Let me know if you have any more questions--I'd be happy to talk with you!

MB

[Port]

jmkboyer ~ THANK YOU! I'll look into this!

[DragonflyC]

Mayo's online information about Sjogren's is full of misinformation and out-dated information, so I'm not surprised to hear that experiences at their clinics have been mixed.

For example, from the "definition" page: "Treatment focuses on relieving symptoms, which often subside with time." http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147

Sjogren's is a systemic disease, and while treating the symptoms is important, doctors can and should offer much more. Also, Sjogren's is progressive and remission is incredibly rare (if it happens at all), so I have no idea where they got the idea that symptoms "often" subside.

[irish]

The Mayo clinic told me that I had neither Sjogrens or Myasthenia gravis---both of these were diagnosed in me about 5 years later. I had positive blood work for myasthenia when I was at Mayos and I had a negative ANA.

I had so many symptoms of something wrong and they missed them all. Irish

[Port]

Thank you to all that have responded = truly, thank you! I've decided to look for second opinion somewhere other than Mayo. I'm not looking for the 'miracle' treatment, I'm simply looking for more than one Dr to tell me the same thing. If I have Sjorgrens, then so be it. I just need to know exactly what I'm dealing with.
thanks again for sharing your experiences with me!

[mncjl]

I've made many trips to Mayo Clinic in Rochester!  Always a hope that they could help.

I always came back extremely dissapointed! Long waits, very expensive lodging, and doctors no more skilled than my regular GP.

Of course, they specialize in some very good areas and can take apart Siamese Twins - smile...

I will never go back again.

I agree with Joe.  A teaching University is a better place.

MNCJL

[aussie mum]

It seems to me (albiet from a place a very long way away) that Mayo is really good at charging the big $$$$$$ but not so good at helping Sjogren's patients.

I'd be looking somewhere else for advice.

Wishing you all the best.
Aussie Mum