My Experience at the Mayo Clinic

[sugarbugar]

Hi Everyone!  I just got back from the Mayo and I know some of you are curious how it went.  I first must say I didn't go for Sjogren's.  I went for Autonomic Dysfunction. With that said, even though I didn't go for that they did want me to see the rheumatologist but I never did get in.  I'm ok with that I like my rheumy.  They did blood work which showed positive SS-B and they said that's all they need to diagnose Sjogren's.  If it was SS-A they would do a lip biopsy etc.

Anyhow, everyone's experience is different at the Mayo and I think it depends on the first Dr. you see there and how good of a Dr. they are.  I think it's a crap shoot for Dr's there.  I saw some really good Dr's and I saw some I would be o.k. never seeing again.

I thought their testing was above the rest for testing small nerve neuropathy's and autonomic dysfunction.  I also felt all my cardiology testing including my echo cardiogram was far more thorough and accurate than I've ever had done. 

My personal opinion, I would never go to the Mayo Clinic for Sjogren's.  They do not get the disease at all and believe it only causes dry eyes and dry mouth, all the way across the board.  Again, I didn't see the Rheumatologist so they may be different but I can say the Cardiologist, Neurologist, Endocrinologist and Electrophysiologist all viewed Sjogren's the same.  They all also thought that Sjogren's can't be causing my Peripheral Neuropathy and I disagree strongly with them.

I did walk away with some answers on how to get better with my POTS (Post Orthostatic Tachycardia Syndrome) that I do believe just might help.  I won't know until I start the meds, exercises and wear my compression garments to find out.  Everyone was very nice, compassionate and very helpful.

I know people see Mayo as the place to go for answers but I don't think that's always the case and especially for auto-immune disease.  Personally, National Jewish has been amazing with my auto-immune disease, understanding it and helping with it.  If I was to go anywhere it would be there, not Mayo Clinic.  National Jewish also will set all your appointments up before you even get out there.  They may add a few but you will know your schedule, unlike the Mayo.  You do walk in blind until your first appointment.

I hope this helps some people.  I had a good experience, please don't get me wrong, I just don't think it's the place for auto-immune disease.  I did get answers and hopefully they work.  They do want me back in 6  months for re-testing on the autonomic system.  I have not decided if I'm going to do that yet.  I'm hoping my Neuro can do all the testing here, we'll see!

Have a great day everyone 

SugarBugar

[Sha]

Hi my dear sugarbugar!!

Welcome back!! I was just thinking about ya and was wondering how it all went...and whalla...here is your mayo thread!!LOL Thanks so much for taking the time to update us on your experience!

Wow girl...sounds like ya had a very exhausting time there with all the ologists! What do they know anyway if they just thinks it is all about "dry issues!!"

I am very interested in the autonomic dysfunction! I was looking it up one time for someone else and was amazed at how much of it pertains to my symptoms: That's the problem with AI stuff...they all have a bunch of things in common and just a few that set it aside to be called a dx of sjogrens or lupus or RA or blah blah blah....it's amazing any of us actually get a dx of any kind!LOL

Please keep us updated!!

I look forward to hearing an update sweetheart!!

Sha who is sending ya hugs and  

[anita]

Sugarbugar,

Glad you got a good work-up on the autonomic neuropathy.  I too have AN and it can cover a vast array of your bodies functions.  I remember my visit to Mayo back in 1998.  I also had a great autonomic work-up but very little help with the cause (I'm sero-negative, and some of my problems hadn't presented at that time).  they follow a very strict criteria for AI diseases so I agree they are probably not as open to other manifestations...which we (patients) know exists.

I'm glad they are starting a plan to help...both with medicine and other suggestions.  My only thought is to talk with the doctor about not starting all these treatments at the same time...you won't know which ONE is the most helpful.  Especially if you start more than one medicine (like a vaso-constrictor AND one like florinef or a beta blocker).   Even just starting things a week apart can be helpful.  I take several of these and it takes time to fine tune to get the right combination.  just a thought.   

please keep us posted with your treatments and whether you get relief with your symptoms.

[tired of it]

Couldn agree more about Mayo,, non commital about a lot of things,,, (Navydad)

[Joe S.]

Thank you tired of it (Navydad). I am glad you are back. I thought it might be you as I saw the punctuation change. I have been pressured to go to Mayo but as far as AI diseases go I do not think they understand or believe. Maybe if they had several team members with these illnesses they might.

[quietdynamics]

Wow...thanks for the insight Sugar 
I am in NJ and am totally underwhelmed with the Dept of Rheum. at Robert Woods Johnson.
They couldn't connect the dots.....
small lesions and scaling on my face?
Gastro problems?....from the Dept Head " not a part of sjogrens"....came home and looked at the NIH doc. that notes the connection..

Now I moved to the middle of the state ...so maybe a new doctor on the horizon.
Perhaps Philly will be an option. Then I can take a short visit to Chinatown. A date with my husband. He is such a lovebug. I am blessed.

If anyone wants to drop a Dr. name in my new location Trenton/Princeton area, it is appreciated.

In the meantime  "eat well, drink well (water) and rest well.

[sugarbugar]

Confused~Thanks!  Yes, they are highly  undereducated about for Sjogren's.  For example my white blood cell counts are very low.  I told them it was caused by the Sjogren's it's not the first time it's happened.  The dr says, "Oh no, Sjogren's only causes dry eyes and dry mouth that's it.  Something else is going on." Really?  Oh well.

Sha~Autonomic disorder is an array of disorders.  For me it's POTS and Neuropathy.  I was diagnosed with Small Nerve Neuropathy with the testing at Mayo but again they say they don't know the cause.  Ummm...lets guess..Sjogren's! 
Navydad~I am glad you're on here, I was hoping to talk to you while I was at Mayo.  Anyhow, I hope you're doing well and you know all too well how little they know about auto immune diseases.

Anita~I did like the Autonomic work up but surprisingly I passed the HRVT test there but completely failed here in Denver. They are guessing elevation made a difference in that test.  I completely failed the Qsart/Qsweat test.  I have no sweating and it said something like I have a widespread suppression of post ganglionic nerves? Do you wear compression wear? What do you do for your neuropathy?  They aren't treating me yet and want me to go back after my thyroid and POTS are under better control.

JoeS~If you have to go to Mayo, I honestly would do serious research on Dr's and ask your appts to be made with the Dr's you pick.  There are good Dr's but it's up to you to do your research.  I would also go armed with research about Sjogren's including their own research papers so they can't tell you it's just try eyes and dry mouth!

Quietdynamics~I sure hope you find a good Dr. soon.  I am amazed at how the medical field doesn't get Sjogren's.  Especially with all the research done on it.  Mayo even had info on Sjogren's they gave me and it even explained it causes neuropathy, fatigue, lymphoma etc. but they still hold to dry eyes and mouth.  Makes no sense to me. I am very glad you have an amazing husband.  Support through this disease is so important. I pray you find a good Dr that will help you.

[shortstuff]

Quietdynamics,

I'm also in NJ.  My rheumatologist is in Essex County.  He seems fine but in the sunset of his career and I have told him some of the more recent Sjogren's info.  So I have an appointment to see a doc at the Hospital for Special Sugery in NYC.  I was actually supposed to go last Friday but the snow had the trains all messed up and there was no way for me to get to the appointment on time so now I have to wait until March.    I'd like to hear your story, PM me if you have time.

What are the lesions on your face like?  Are they like pimples?  I was just at the dermatologist today complaining about some zit like bumps I've had on my face for over 2 months.  I had a staph infection on my chin last fall, that they gave me antibiotic cream for and I'm not sure it's gone.....it was scaly and more like dry skin, not at all what I expected a staph infection to look like.  Then I grew a big bump on the bottom of my chin that filled with a combination of pus (TMI, sorry) or oil, would scab up and then come back so I got a shot of kenalog (used for pimples) in November but it has not gone away.  Now I get pretty large gross things on my face and I'm not sure if they're zits or something else.  They take weeks to go away and leave a kind of dimpled hole in my skin.  Today derm said she thinks it could be rosacea but I was there for something else and it wasn't a comprehensive exam.  I just don't think it's rosacea.....not sure what the heck it is.  I've always had acne and wondering if my body just can't fight it as well on Plaquenil but I have no idea.  Anyway.....just curious if this is similar to what you're experiencing.

[irish]

shortstuff, Have any of your docs mentioned culturing your lesions on your face? I would think that would be the first thing I would do in view of the fact that you were told you had staph before. It actually is the first thing they should do anyway. First need to know if it is infected before they can start figuring out any other stuff.

I would also think that they might want to bipsy the lesion in order to rule out any other skin disorder. Lupus causes skoin lesions that leave scars, etc. I had a really bad arm rash, swelling, etc one time and it took me until I saw a dermatopathologist to get it cultured and biopsies. Ended up having bacterial and fungal infection plus it was an autoimmune disease called Bullous pemphigoid. Who woulda thunk!!

I hope that you can get this taken care of soon. Good luck. Irish

[tired of it]

I seriously doubt Mayo knows much about AI diseases, I wont go so far as to say I didn get a good workup while tehre, but,, and heres teh big but,, if you dont show any signs of AI in your bloodwork,, you will not come away with a Dx,, when I saw the Rheummy there,, he checked me over,, looked at my bloodwork and was just non commital in his Dx of SS,, in his notes that I got a copy of,, he noted that I didnt carry water with me into the appt,, its not like I drag a 5 gallon bottle of water with me everywhere,
   If i were to go back now, I bet you a dollar there tune would change,, my neuropathy has gotten a lot worse, my symptoms have worsened and the best I can get is a pain clinic, I refuse to live like this, and willl keep demanding answers,, the old mantra of We don know whats doing it,, is wearing thin,, there is a cause for everything, nothing happens for no reason, if you want answers,, you almost have to get beligerent ,, I have said this before,, if your car breaks down,, and they only fix half the problem, you can bet you would be back there screaming,, dont you think our bodies are worth more then a car,,, and as for picking doctors at mayo, I dont now how you can do that,, I saw a neuro,, they made all the appts,, and off I went,, now if you were to go there on your own,, thas different,, but I didnt have that choice,
  And I have read if you have medicare,, they wont take you there,, medicare doesnt reimburse them ,, He!!  I;m still fighting over the bill from them from teh trip I made out tehre in May of 2010,, I wish I never went there,, becasue,, now,, I go to Doctors and hear,, wel you went to Mayo,, and came away with a clean bill of health,, WHAT, ? Mayo is not this mecca of magic healing,,

[Parrot Pal]

Hi Sugarbugar.  Which Mayo Clinic did you go to?  There are a few.  I too went to Mayo (Jacksonville, FL) for Autonomic testing and was dx'd with dysautonomia (orthostatic / neurocardiogenic / POTS type).  Saw rheumy there specifically for joint hypermobility.  He gave me new dx of SjS.  Crazy thing is that none of the Mayo docs suggested a rheumy consult - I requested it.  So, I probably wouldn't have the SjS dx and be able to address it for who-knows-how-long.  So, essentially, we must be our own advocates and researchers and diagnosticians, no matter where we go for medical care - at least, that's how I see it.  

Question:  do you get weird vibes or feedback from your home docs when you tell them of the dysautonomia?  They look at me like I just grew antennas, and they all give VERY interesting body language messages when they read it on the new patient paper or when I brought the consults to them from Mayo's electrophisiologist.  The hands go up like they want to play patty-cake, like putting a barrier up between us (new local rheumy), or the shoulders shrug and head tips from side to side (from my neuro), or (and it makes me lol a bit), the PM&R doctor that I have been seeing for more than 10 years (with NO narcotic rx's) read the paper attached to my file, and pushed the file away like it had a bug on it, hahaha.  My internist, just looked at me sympathetically and held the papers in her hands staring at me.  I wanna cry when it's happening, but laugh now.  They have all said in one way or another 'i can't help you with the dysautonomia.'  I remind them - that is not what I am here for - let's focus on ___________ (migraine, or SjS, etc.).

[dainbramage]

Hey ParrotPal,
We (hospital field) hear bad things about Mayo.  It is kind of a secret-nonsecret that Mayo has bad press and none of us go there for anything, nor will we send our families there. So becareful.

[Parrot Pal]

Hi Dainbramage.

Wow.  I hadn't heard that about the Mayo. I have worked in hospitals, on the floors with docs, nurses, case managers, etc. for almost 15 years and never heard that.  In Florida, we have Univ. of Miami - Miller School of Medicine Group, Cleveland Clinic west of Ft. Lauderdale, Mayo Clinic in Jacksonville, and Shands in Gainesville.  The are the "big" specialty locations.  Any scoop on those?

Could the inside info be about all the Mayo locations, or just the main ??

thanks.

[dainbramage]

Parrotpal,
I have worked in the same hospital for 23 years and that is one of the biggest nonsecret-secret in Jacksonville.  People talk....haven't you heard of the big "problem" that happened at Mayo, this was in the news.  Look this up on the internet.
Shands Gainesville is good, many people from my area go there. I love my doctors so I do not want to go anywhere else.

[Parrot Pal]

Dainbramage,

How 'bout a hint on what to search.  I searched Mayo Jacksonville + problem, or event, or negative publicity.  Nothing.

You can PM if you prefer.

Thanks.