I'm curious to know if anyone has gone to Mayo Clinic for further testing, 2nd opinion, etc.
NavyDad had a bad experience with them. Others have had a good experience. It depends on who you see and what their knowledge and experience is. I hope that it goes well for you.
I know someone went to the one in AZ... bad experience.
I have thought about it in desperation. But my hubby has been there twice for Meneire's disease and they have done absolutely nothing to help him, so I figure why spend the $$. Plus, I have personally been poked, prodded, scoped, you name it, enough for a lifetime.
If I REALLY thought they had an innovative, ground breaking Sjogrems program I would probably reconsider.
Let us know if you do decide to give it a try...
KellyG ;)
I'm very surprised that people have had bad experiences. I've only heard the positives from going to Mayo. From what I've read and researched it can take years and years to diagnose Sjogrens and my rheumotologist 'diagnosed' me quite quickly. Even though I'm very comfortable with my Dr., I'm looking for a 2nd opinion. My life has changed so dramatically in such a short time! I'm looking for answers.
I've not been to the clinic in Rochester for rheumatology but they worked miracles on my dad's cancers. It is such an impressive place. Of course, as Joe said, it depends on who you see. If you go, make sure you wander around all the underground tunnels. Amazing stuff.
MB
Mayo is very good with heart disease, cancer and most ailments. They seem to save a blind spot with AI diseases. A friend's son has Muscular Dystrophy. Mayo was just monitoring his path to death on a monthly basis. The boy started taking Alpha lipoic acid and Acetyl L carnitine. After three visits they figured out that the gain in muscle mass was not a problem with their equipment and asked if he was taking any new supplements. When he told them what he was taking, They found someone to provide the money for a multi-year study of the supplements.
Mayo IS a great place for some things. However, from what I have been told (or seen myself when I went) they follow diagnostic protocol to the letter for AI disease. Which means if you are sero-negative, you don't have Sjs. Some places are like this, mostly because they document cases for research and they can't document it unless they have concrete evidence. Johns Hopkins is the same to some degree. I am sero-negative, but got a diagnosis at JH based upon a very positive lip biopsy. JH doesn't like to do just 'clinical' diagnosis either, so you need something definitive in your labs, biopsy, etc.
Mayo is an "experience", so if you want confirmation, then go for it. If you are looking for a clinical diagnosis (without +labs or +biopsy), then you won't get it.
I teaching hospital may be a better bet for a Dx or second opinion. I went to a clinic staffed by University of Minnesota Doctors and Educators. I was able to see the man that specialized in Sjogren's. He looked at my labs, my eyes, my mouth and my skin. The Dx of Sicca came with-in seconds. By that time I had a dentist and eye doctor also concur about Sjogren's.
It's too bad Mayo is so far behind on AI. I agree that a University teaching hospital is a great place. I got my diagnosis from the head of rheumatology at the U of NE Med Center.
Good for SOME ailments. But I know for a fact that they will not even CONSIDER Lyme disease even if it is staring them in the face with a big fat BULLSEYE. In Lyme circles, we say to HOLD THE MAYO. :-\
jmkboyer ~ Are you talking about the University of Nebraska Medical Center? I'm in Nebraska and I've considered contacting them but don't really know how to start.
jmkboyer~if it is the Univeristy of Nebraska Med Center, I would like to know how to contact them also!
I had a very bad experience at the Mayo in AZ. I would not recommend them or at least the physician I saw who supposedly knows about Sjogren's. I felt they were very outdated and narrow / rigid in their views. The statement was made to me that "Sjogrens is primarily dry mouth and dry eyes and anything else is EXTREMELY RARE." I don't care to write too much about it on a public board but if anyone wants to private message me, they can.
It was very disappointing to put it mildly. I could write pages about it, but I don't want to get myself too upset! It isn't worth it.
Also, I do think Mayo is very good for some things. I visited Rochester with my father and they diagnosed him with pancreatic cancer.. I have read other reports on this board of people finding them outdated and unhelpful for auto immune diseases. You can do a search. The doctor I saw was one of the worst physicians I have ever seen. It was like night and day compared to the physicians my father saw in Rochester Mayo where I was very impressed.... Their treatment was not as cutting edge as Johns Hopkins for Pancreatic Cancer, but they were competent and kind.
One more thing. I am not positive about this, but I do not think Mayo tests SSB and SSA auto antibodies unless your ANA is positive. My ANA test was negative at Mayo and they did not do those tests. I came there because I had a positive SSB test along with symptoms.
The tests have been repeated and this time I had a positive ANA and a positive SSB. Mayo did not repeat the SSB when I went there and that surprised me. I looked around on line and found they only do it if the ANA is positive. There are many people on this board with a negative ANA and positive auto antibodies , either SSA or SSB so to me, this doesn't make sense.
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.......
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.
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. :)
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!
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
jmkboyer ~ THANK YOU! I'll look into this! :)
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.
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 ;D
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! :)
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
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