Autoimmune diagnosis timeframe
I waited almost 8 months to get into Mayo after years of battling multiple autoimmune diagnosis’s. Apparently they were all misdiagnosed and mistreated. It’s now been a month since my initial multi specialty appointments began. We’re traveling over 7 hours each time and though that part has been smooth the lack of followup outside of the portal is getting super frustrating. I’m just not sure anyone is actually following up on the labs or if anyone is communicating. I’m so lost and frustrated and reaching out in the portal is radio silence. Can anyone please give me some hope that all of this isn’t a complete loss? Has anyone had to wait months for them to get together for an answer? Has anyone taken their labs elsewhere to get a diagnosis or treatment?
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Hi @nugget84, I'm sorry to hear that you're not getting the communication followup that you're expecting on the patient portal, called Patient Online Services. Typically, communication through the Mayo Clinic patient portal is very responsive and you should hear back from someone either same day or within a couple of days. I wonder if there is something not set up properly.
I suggest that you start by contacting Mayo's Concierge Services
By phone 7 a.m. to 6 p.m., Monday-Friday: 507-538-8438
Concierge Services offer personal help with setting up your account with Patient Online Services and they can trouble shoot what is going on.
I understand your frustration, as I was recently given a diagnosis of globulinemia, and getting to the diagnosis took a very long time. I am continuing to have more labs, all of which can be confusing. It sounds like you are on the right track. Stay focused if possible. Thinking of you and wishing you a positive outcome
Autoimmune Diseases are a different "ball of wax". I went to 3 different doctors and then went to an Endocrinologist who diagnosed me with Hashimotos Thyroid Disease. I also have had Fibromyalgia, and was diagnosed with Graves Disease and Ostearthritis in the last year. I have to get bloodwork every 3 months, Ultrasound of thyroid and you have to keep tweaking the medication for thyroid disease. It takes time, doing your homework such as this wonderful website and finding the right doctor to help you. Yes, I have taking my labs elsewhere before. Yes, I have gone to some doctors that simple did not listen or couldn't think outside the box. Yes, it is time consuming and frustrating, but, when you get the right doctor & treatment it is such a blessing. Don't give up. Praying for you to get answers & God Bless.
Thank you for the support. God Bless
Same here, 25 years later. Any doctor, NP, PA can order almost any test, and can read/interpret numbers. just Google: who can diagnose autoimmunes: as a starting place; then search each listed – most doctors NPs, PAs, have heard of us, but we are the anomalies, even in rheumatology. Most will suggest rheumatology to try to get us to someone with more experience to try to get us the best care. Then we must know the "business" we are dealing with – some groups limit what their primaries can do for any number of reasons, others allow their doctors to partner wth us to our benefit. The people caring for us are answering their calling – but the business office, the CEOs and stock holders call the shots. Some welcome a competent, articulate, consistent "patient" – some do not. I give everyone a fair chance; should it fail, I move on and away. The answers are out there, and often take "pulling teeth" to get them. Just don't give up on yourself – the book of rheumatology is incomplete, & only reads what we/they think/know to date, and only a guide at that. Each of us adds to the narrative. Google is also just a tool – an electronic encyclopedia (giving away the century of my birth) to help understand, define, solidify, enhance, provide ease to the office visits. and yes, even guide a diagnosis – I was experiencing 2nd episode of shingles symptoms, but no rash (again) seen by derm or PCP; asked google; no-rash shingles?" YES – zoster sine herpete aka/internal singles/aka no rash shingles. took to PCP, ordered test, VERY positive. another very rare (my 4th confirmed). Is easy to get discouraged – please don't – we can't get answers if we stop asking questions.
There is a Google Scholar website which is phenomenal and posts a lot of notes and studies and retrieves whatever you type in the subject line. I got some answers from that as well. You are correct. Some specialists are very happy with a patient that knows their own body and asks questions….others not so much. You are correct. We don't get answers if we stop asking questions! We must press onward my friend!
Thank you for the source referral, have so much to learn about the "net. so appreciate all suggestions. If i ever see hesitant, resistant, difficult, uncooperative or NON COMPLIANT in my files – thems fightin' words and i will have the last one, and after 75 years, I know a few. My current PCP (and 2 previous) literally "gets" us – I gave them every chance to cut and run, but they are as determined as we are. Hope all can find your own – someone to keep the lights on when things get dark. Again, sincere and hopeful thanks.
A friend called via phone after locating the right department.