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Dec 12, 2017 · Referral to Mayo declined in Autoimmune Diseases

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.

Nov 14, 2017 · Getting an appointment in Autoimmune Diseases

Thanks for all these replies, so helpful. What is an average wait time once a referral is made?

Nov 8, 2017 · Getting an appointment in Autoimmune Diseases

Hello,
my wife and I are starting to put together a package to send in to Mayo. We are Canadian, and for twelve years she has been dealing with an undiagnosed mystery disease (she is 25). Mayo is a last resort at finding a diagnosis and treatment. Does anyone have advice on how best to present her medical history to increase our chances of getting seen at Mayo? Is there a high probability of not getting an appointment? I ask because her test results are often normal, and yet she suffers an immense amount of pain which renders her constantly bedridden, unable to work, study, travel, etc. etc.

We are very eager to have the opportunity to go to Mayo, and any advice on how to get there we would greatly appreciate.

Mar 27, 2017 · Undiagnosed, debilitating health condition in Autoimmune Diseases

Thanks so much for your thoughtful response. I certainly agree that finding the right PCP can be a major hurdle. From what I have seen since being involved with my partners health care, the responses and care have ranged from total apathy to total antipathy. We have a physician now who is willing to make referrals, but is otherwise not particularly adventurous or enthusiastic about research into her condition. I am currently exploring options around provincial health coverage here in Canada extending to out of country clinics in order to get closer to a visit to Mayo. Alternatively, a clinic at Mt. Sinai hospital in Toronto deals specifically with arthritis and other autoimmune diseases. Unfortunately, while our socialized medicine here in Canada is in many cases a wonderful asset, it does make wait times for clinics such as that very, very long.

I am very heartened to hear about your recovery. That is wonderful for you, and wonderful for me to hear.

Mar 27, 2017 · Undiagnosed, debilitating health condition in Autoimmune Diseases

I’m very grateful to both of you for chiming in and offering your support and resources. It’s a great comfort. We live in Canada, where it seems clinics devoted to autoimmune disease are few and far between. While we aren’t certain that autoimmune disease is in fact what my partner is dealing with, it seems very likely considering her increasingly wide range of symptoms and lack of diagnosis or answers of any kind. It is an absolute dream of ours to be able to undergo diagnostic care at Mayo, but the financial reality will keep that just a dream. I wonder if anyone in this discussion group has experience with autoimmune disorders and diagnostics in Canada. I would be very grateful for any information or resources about navigating the medical system here. It is a frustratingly slow system and very difficult to find new doctors once a doctor has lost interested in you.

Mar 27, 2017 · Undiagnosed, debilitating health condition in Autoimmune Diseases

I’m writing this on behalf of my partner. She is a 25 year old who has been debilitatingly sick since she was thirteen. She was hospitalized with extreme abdominal pain which was initially misdiagnosed as appendicitis. Her entire teen years were spent in hospital without any diagnosis. Her condition was dire enough that school was out of the question. As an adult she has been unable to work due to many widespread symptoms, most notably near constant excruciating abdominal pain and nausea. Other symptoms include myoclonic seizures, low platelets, chronic anemia, hypothyroidism, muscle weakness, tremors in all limbs and jaw, and extreme pain in all limbs. This is not a full list of symptoms. Any advice or similar stories would be very welcome. In general, her experience of the medical system has been very hostile and accusatory. She has been treated as a chronic complainer, attention seeker, or otherwise been told that she has to accept this low quality of life. I do not accept that.