My Experience at the Mayo Clinic

[anita]

I'm guessing it's about the Clinic worker and Hep C...he was using patient syringes or something like that.

You could find at least one nut in EVERY hospital, clinic, etc.  I would dismiss such rumors...maybe to jealousy.  Doctors think pretty highly of themselves so I can see where rumors like this get started.

Mayo may have it's faults...not every place is great in every way.  There are lousy doctors in every facility.  But Mayo has great features as well...and has help lots of people.

Glad Sugarbugar got what she went for....help.

[dainbramage]

Besides some doctors losing their license, look on Mayo Clinic worker in hepatitis case used patient's syringes
on jacksonville.com. Clinic Releases Statement After Doctor (internal med) Arrested In Osceola County Sex Sting
with 15 year old girl. Friend almost lost their life when a DVT was left untreated, did not know what they were doing.  Not a good ER. Had to have an ER due to Jacksonville's ordinance with every hospital must have ER.

[dainbramage]

anita,
Not rumors people died...a life is worth more than jealousy.  Not doctors doing the talking, its RNs and other workers who have been there.
Each hospital have there bad as well as good, if the doctor listens and speaks to you nonmedically and spends time with you and you feel comfortable...keep them.  If you call and they answer you back within an appropriate time period then keep them.  Good luck

[Linda196]

Unfortunately, all public services have their horror stories, but this forum is not really the place to perpetuate news stories that really have little or nothing to do with the medical investigation and treatment of Sjogren's.

Please, lets try to maintain our focus and leave the peripheral stories where they belong, in the news media.

Thank you all for the helpful tips and suggestions about the various doctors and clinics, and their attitudes about SjS and AI in general.

[anita]

Sugarbugar,

I'm not surprised about the HRVT.  Autonomic neuropathy symptoms may not be consistent day after day.  Just like all of our problems, we have good days and bad.   Sounds like they may have found an explanation (elevation), but at least they didn't dismiss it completely.  Your local doc can also repeat some of the basic heart rate testing to document problems if need be.

I have worn the compression stockings at times, but they are a pain in the butt.  I personally donn't find them to be very effective...but all of us are different.  My BP is finally well controlled (hope I don't jinx myself) after a long year.  I eat a high sodium diet (per doctors orders to help raise the BP) and take midodrine and florinef.  I also watch my fluid intake...dehydration can take you by surprise quickly.  I still have some low BP's (at the docs this morning, nurse freaked out with it 88/48) but I recognize "that" feeling and sit down before it gets to the point (where I might hit the floor). 

Hope they get the thyroid thing worked out and then back on track with your AN symptoms.  Keep us posted.

[sugarbugar]

ParrotPal~Ha! I so know what you're talking about! Dr's look at me
Like an alien. I had an ER Dr tell me he had to go back to school to try and treat someone like me. I was there for dizziness but he was terrified to do anything!
My cardiologist is great though
Anita~I had no idea autonomic tests can fluctuate. They do think it's elevation but like you said we'll know when they re-test because they want it done here in Denver again. I too take Midodrine, couldn't live without it. I don't do Florinef though. They want me to but I'm afraid of it. Also, do your MRI's show anything? Mine did show progression from my last MRI 6 months ago and it now shows demyelination of unknown origin. Does this have to do with dysautonomia too?

Navydad~I pray you get answers, I pray for you often and hope you come across a Dr that will help!

[inga]

Some autonomic tests will vary, not all.

Autonomic is kind of like the word....automatic.  Your body is governed by the nervous system.

Your body reacts every millisecond to manage blood acidity, alkalinity, all the electrolytes, pressure via baroreceptors, all this adds up to breathing, balance, circadian rhythm, heart rate, metabolism etc....it varies by the second!!  Autonomic failure can be extremely serious....and it isn't always 'auto immune'.

I suggest googling Pure Autonomic Failure, Multiple System Atrophy and the like.

The nervous system is an organ.

This organ governs ALL other organs.  When your autonomic nervous system dumps, you are in a world of hurt.  Most drugs affect the nervous system.

All my autonomic tests are abnormal and I failed the thermoregulatory sweat test miserably.  At this time, I don't think they really fully understand it well enough to know if it is post or preganglionic.  I have signs of both kinds of failure.  I have a very high ANA on a regular basis but am negative on ENA.  I have small fiber neuropathy.  To credit this to SjS would be very premature.  Sicca is usually the result of a messed up nervous system.

There is no agreement on what Sjogren's is, which is why one can't get a consistent answer.  It ranges from medication indued sicca to full blown scleroderma like illness with numerous +antinuclear antibodies.

Mayo follows the usual pattern of needing a +ENA for diagnosis of autoimmune disease.

They only treat the symptoms of autonomic dysfunction....there is no real known cause....and no treatment or cure for the degeneration of the nervous system.

Many medications can cause a dysautonomia like syndrome.

[sugarbugar]

Inga~ Thanks for that info. I still have to do the full sweat test but I failed the Qsweat/Qsart miserably. I'll have to google what you said. The only Meds I was consistently on before all this occurred was Synthroid. Your info on Sjogren's makes sense too. They do believe it's autoimmune they just don't know what. By what you said they may never figure it out?
Is there anyway of getting better? Or do you just learn to take your meds and live with it? Thanks for your info Inga!

[gurs]

I think the medical community is just clueless about Sjogrens to begin with...if they did more research, (possibly reading this board?), they
would find alot of us have these MS-Neuro issues, that seem to go undected even with testing. Not much in treatment either so Ive kinda
not bothered anymore with any extra testing. I know the issues I have are NOT normal and its not in my head etc. Im sick and tired of explaining myself
and the disease to everyone as well. They dont have a clue..sorry to rant.

I went to alot of the top hospitals and was not happy with the docs there as well. One top director of rheumatology told me 5 years ago that
I needed to get some more rest?? are you kidding me?

Gursie

[anita]

Sugarbugar,

I too rely on the midodrine, but have found the addition of florinef helpful (but I stay on a minimal dose now).  There were NO side-effects for me. 

I just had my first MRI's in over 6 years (TODAY).  I have a pacemaker for the autonomic neuropathy so have not been able to have one since 2004.  However, Johns Hopkins has a brand new protocol to do MRI's on patients with pacers and I was accepted into the pilot program.  We did 5 scans (brain and the entire spine).  i hope to have results soon. I'll let you know.

As Inga said, some (but not all) autonomic tests vary.  The ones I was referring to, were heart rate fluctuations & BP testing.  Identifying autonomic dysfunction in these can be hit or miss as you try to catch it in the act.   However, tilt table is a pretty consistent test as is the sweat test.  Autonomic testing for gastroparesis (I don't know if you have problems with this also) can vary some. 

And yes, the ONLY treatment for AN is pretty much symptomatic by system affected.  Although I think IVIG may at least help control it to some extent.  There is NO way to repair those nerves.

[Tinker]

Navy Dad tired of it,
I'm glad you didn't give up.  worried about you.  I've found the same thing you have...drs. use past appts againt you such as mayo clinic.  Doesn't that just irk the heck out of ya.  I know.  Sometimes I've found that if I say , "aw it's nothing...just a little arthritis."  they take notice. 
A little reverse psychology.  Sorry this is probably hard to read.  can't see with sleeping meds.