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For many months, Bethany Pautsch’s symptoms were a mystery to the doctors she was seeing in Chicago. When she was told she would need a hip replacement without knowing the cause of the symptoms and deterioration of her joints, she came to Mayo Clinic, where a doctor quickly diagnosed her as having: Still’s Disease. Listen to her explain how this diagnosis and subsequent treatment have changed her life…
This place is a pile of crap. It is the place of last hope for a lot of terminally ill patience to take advantage of.I don’t know anyone who has experienced any miracle cure just another guinea pig. I went there on the advise of my doctor who sent me there to save my life when I had almost no sodium in my body and had difficulty breathing. When I started getting the symptoms of seizures again, I called an ambulance so they could find out what was causing this.I had been treated before for drinking too much water but no one told me that. When I explained my symptoms and the hosptial I had been in told me to drink 8 glasses a day and I had water intoxication but not only that. If they had just bothered to take 1 chest x-ray I have severe Sarcoidosis.Its chronic and in my case after 10 years of hospitals visits and doctor visits, no one could tell me what was wrong. I wish I had sued everyone of them because when I got home the doctors did a biopsy on my thyroid gland and low and behold instead of sending a physiciatrist and instead of this stupid cloak and dagger game these drs. play. Just tell my what screwed up pile of crap drug you want to put me on while I die on Paxil or the drug of the week. Its digusting not being believed. Was I not believed because I was woman or were they to eager to test out the drug of the week and now the Sarcoid is on my brain and my lungs have so much scar tissue that I will die like Bernie Mac my body won’t be able to fight off a pnemonia. Thanks a lot for thinking in Gucci doctorland like you didn’t care about my symptoms but needed to test your newest anti-depresent. May your Karma find you for what you have done to me. Senteced to death is what my punishment is. Thanks again! Jerk offs! Doctors are the only people that can totally mess up and still get paid.
Laura, I’m sorry your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs on each campus. Please feel free to call and tell them about yourconcerns. Their numbers are:
Minnesota: 507-284-4988
Florida: 904-953-2019
Arizona: 480-342-2651
Hi Laura,
I am so sorry to hear of the disappointing bad experience that you have had.
I am ‘replying’ because i understand how you feel.(To an extent.)My husband has Sarcoid. It has been a constant battle for him and for our family as we watch/help him on his journey through this unforgiving desease.
He,also, has terrible scar tissue on his lungs.This desease has attacked his joints,kidneys and lungs and is working on his liver, brain and pancreas. He has had to have his arm,wrist and hand fused together because the bones/joint had crumbled and kept falling out of ‘joint’, which was so very painful for him.
I never sleep well at night because i feel like i MUST watch over him. In January I found him in a coma. He was on a ventilator for 3 days and then another 4 days in hospital healing up from double pneumonia and shut down kidneys,then home.
Two years ago April I found him in a coma and as I pulled him up into the bed he stopped breathing and his heart stopped! I saw in his eyes and he went from a person to a thing!!I performed CPR and got him ‘back’. The Emergency Squad took him and on the way to hospital they lost him twice. He was on life support for a few days and, as before, he stayed in hospital another 4-6 days and was released doing well. (God has a plan for him!!)
Laura, I would love it if you would find me on Facebook. That way would be able to talk about this horrid desease. (viki Brown, Ohio).
I hope that you are doing well at this time. Here are some hugzzzz for you: xoxoxo. I will pray for you! Viki
I was out tehre in May of 2010 trying to find out why I have small fiber neuropathy,, no reason was found, now I can barely walk, my arms are useless,, I cant getup and down stairs,, ever since Mayo said they cant find the reason why,, no doctor wil treat me,, they all look at me like i;m crazy, ihad to quit working,, and got blamed for wanting a financial gain from not working,, ya like i like sitting around the house every day, unable to walk,, unable to tolerate cold, my feet feel like lead,, my salivary glands are rotting away, I cant eat, I choke on food from the saliva thats like cottage cheese,, every joing in my body is on fire,, it never stops,, one neuro said I have fobro,, HUH,, oh,, the rheummy who saw my at mayo put it in his notes,, that since I didnt bring a bottle of water to the appt,, that i cant have Sjogrens,, so we Dx based on wether a patient bring s bottle of water to teh appt,, I have nothing good to say about mayo,,, not a thing,, its the last reguse of the dying,, and most prob go home without finding out what is wrong with them, thanks Mayoo, you gave me a death sentence,, and now that i donthave good insurance,, I am stuck,, thanks for letting a good man and father slip through teh cracks,, hope karma comes back around to some of your people
I’m sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs, and if you wish, you can call and talk to them about your concerns.
Minnesota: 507-284-4988
Florida: 904-953-2019
Arizona: 480-342-2651
Hi everybody
I have been diagnosed with Still`s disease since almost 5 months ago.
I am on medication. My doctor, Elahe Dolatshahi, made a miracle as she
easily hit the nail on the head when my body showed first symptoms.
So far I have gained a lot of information about the disease and to the best of my knowledge, symptoms may go away or patients` health may turn for worse,but what really matters is medication can suppress symptoms ,so don`t get worried.
may i know plz what are the prescribed meds they gave u there? my sis-in-law was diagnosed with d same disease which is still’s disease. they gave her meds (methotrexate and prednisone) but unfortunately she still having a hard tym with those symptoms. thanks in advnce…
My sister, age 57, was diagnosed with Adult Onset Still’s Disease about 16 months ago, after months of trying to figure out what she had. 16 months later she is still on many medications including 22mg prednisone. Every time they try to wean her off the prednisone, her symptoms get bad quickly. She has been on remicade and is currently on kineret. Any recommended doctors at Mayo to help her out?