Referral to Mayo for Autoimmune or Unknown Condition

Posted by kspiel @kspiel, Dec 12, 2017

I've posted in this thread a few times, as my wife has been very and increasingly ill for 12 years. Her disease is debilitating, and like many of you in this group, she's been labelled an attention seeker, a chronic complainer, etc., etc., etc. I am not certain that her illness is autoimmune, but I suspect it very strongly. Her symptoms are widespread (intestinal, epidermal, muscular/skeletal, and on and on). Recently, her family doctor in Canada, where we live, made a referral to Mayo which was highly detailed, chronicling her complicated medical history, progression of symptoms, and the day to day grim reality of this progressively treacherous disease. To our utter shock and disappointment, we received word today that the referral had passed through internal medicine, down to gastroenterology, and was, with regret, not accepted. According to the letter, they felt there was nothing to be done. I can't say how disheartening this news is. A young and vibrant person that I love is ill and suffering desperately.

Our doctor has promised to write a strident letter of appeal. I called the international appointments office today, and the representative I spoke with said that she would be sure to resubmit our application, and advised that we wait until the doctor's appeal is received also, so that that can be reviewed along with the referral. I am anxious to hear if anyone has a similar experience of at first being denied an appointment, and through contestation eventually received one. I fear that our window of opportunity to receive meaningful treatment is shrinking.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@sundance6

fmgeorge, Most of us Boomers were raised that you didn't question authority, in this case meaning doctors. But my feeling back then they sope with trueness and comappsion! When I went through Stage IV colon cancer 20 years ago, I saw, "MY SURGEON AND MY ONCOLOGIST" everyday I was in the hospital! Now you see a different doctor every day who knows nothing about you! I have taken the attiude that they are working for me! If I feel they are not considering my betterment and blowing smoke up my A%$ I'm not affraid to say Bye to them in thier face!
A JOKE! It's like when you go to a funeral and a religious person is giving a Eulagy(sp?) about Old George who are they are buring and saying what a Great Guy Old George was, when in actuality he never meet Old George. And his wife would say what an Asshole Old George was! LOL!

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Right On!!

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In reply to @sueleerock "Right On!!" + (show)
@sueleerock

Right On!!

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If I hadn't advocated for myself and researched online fibromyalgia rheumatica and giant cell arteritis, who knows what would bave happened to me. My new primary thought I might have fibromyalgia and gave me an anti inflamatory to take while on a European vacation. Told me to come back when I came home. Went, took blood work, sed rate up gave me 10 mg. Prednisone. By this time, my jaw hurt, neck pain, throbbing headache, eyes blurry. Made appt with rheumatologist. She ordered a biopsy immediately and gave me a prescription for 50 mg. Prednisone to take After the biopsy. Two days later, she called, biopsy positive for Giant Cell Arteritis. This all started at the beginning of July and biopsy result was at the end of August.

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How was your doctor able to send a letter of appeal? Could you please attach the link as to where to send it. My providers asking.

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@oldkarl

@peach414144 Thanks, Peach, for the great note. Some days all I can do is sit and watch the ocean about 300 feet away. Sometimes I see a whale spout, or sea lions playing, or just waves breaking. We take the good stuff where we can find it.

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Oh! I read my post I wrote when I was age 80. Now I am 84 and all is true but now I have so many more medical problems. Jus keep moving do not stop until it is time to rest and then take off again. The legs continue with the pain (only more so). Taking the hydroxychloriquin keeps me out of the wheelchair and the nails on my hand continue to grow. And am going blind due to the hyperparathyroidism (TED). Had a nuclear test last wednesday and am waiting for the results. Crazy isin't it as I also have hypothyroidism. On and on. Am slowly losing my mind from all this and my age. At my age I am packing up all and moving to where I can be more independent. It is exhausting. Hopefully I will be able to unpack. Am taking bets: Will I live through this? After I have my.computer put together I will post again and good luck to me, (And all of you guys.) Cross your fingers/

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