Possible Lupus and Getting An Appointment

Posted by nikohl7 @nikohl7, Oct 10, 2018

For the past several years I have had fevers on and off and joint pain. However, I brushed off these (minor symptoms then) as a part of my job since I work as a Paramedic and my job is physically demanding. I recently had surgery for endometriosis, that turned out not to be endometriosis, but they only found a lot of petechiae in my pelvic and abdominal cavity. Since the surgery my joint pain as worsened, fevers have become an almost every day thing. Mind you I’ve also had rashes, hives, petechiae to my lower extremities, blood in my urine for over a year now, worsening fatigue, brain fog, muscle pain and flank pain, I also very recently developed the butterfly redness on my face. My old PCP didn’t believe it was an autoimmune disorder solely based off of one negative ANA. I’m referred to an internal medicine doctor for infectious disease work up. She does the work up and everything is negative, she believe it’s autoimmune as well but I’ve been on steroid very recently to help my symptoms which was actually working. I’m in this weird limbo now of multiple people thinking it’s either some sort of autoimmune disease or lupus specifically because I now meet 6/11 criteria. I called Mayo not long ago and was told I could not be seen without a diagnosis, this was before my symptoms got worse and I now have cardiac involvement that is causing my heart rate to be 150-180 while resting and is not caused by any electrical abnormalities. As anyone else had difficulties seeing a rheumatologist at Mayo without a firm diagnosis? I’m at my wits end, working in healthcare myself I can communicate what is wrong with me however I can make anyone diagnose me and this is beginning to effect my ability to work which is really apart of who I am as a person and how I provide for my son as a single parent. I already know my insurance accepts Mayo and doesn’t require a referral. Anyone with answers?

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seanlroop | @seanlroop | Oct 10, 2018

The new and worsening symptoms would indicate your thoughts to be a reality. The butterfly redness is a very real symptom of Lupus, so it could be a comorbidity situation (multiple autoimmunes) that have you spiraling on a wheel of degradation. I would call Mayo Rochester immunology immediately and not quit until they say that they will see you. Time is of the essence. Do not take NO for an answer. The squeaky wheel gets the grease. In this situation. Mayo is where you need to be for autoimmune diseases. God bless you and thank you for your service. Occam’s Razor - All things being equal the simplest answer is probably the right one. What do you think it is and then sell it to the doctors to get them to see you. And do not take no for an answer. Good luck on your journey. “Never never never give up!” Winston Churchil

nikohl7 | @nikohl7 | Oct 11, 2018

In reply to @seanlroop "The new and worsening symptoms would indicate your thoughts to be a reality. The butterfly redness..." + (show)

That is probably what I’ll be trying in the morning. I know my symptoms are worsening. It’s just tiring trying to get those that have trained in medicine longer then I have to see that as well. But I won’t stop trying. Much to stubborn to give in. Lol

John, Volunteer Mentor | @johnbishop | Oct 11, 2018

Hello @nikohl7, welcome to Connect. I'm sorry you are having difficulty getting an appointment at Mayo Clinic. I don't think you are alone when it comes to having trouble getting an appointment at Mayo. Here is a discussion that may be helpful to you:

Advice on providing information to get initial appointment
-- https://connect.mayoclinic.org/discussion/advice-on-providing-information-to-get-initial-appointment/

Are you able to get a referral to Mayo from your primary care doctor?

John

jleem | @jleem | Oct 11, 2018

It can take months and even a year to get an appointment with these specialists. Even though your insurance doesn’t require a referral...Mayo sometimes does. Even with multiple referrals I wasn’t able to get in for 6 months. I decided to be seen at Gundersen Lutheran.

Lisa Lucier, Moderator | @lisalucier | Oct 11, 2018

Hi, @nikohl7 - I don't work in appointments at all, but what I understand is that if you started in Mayo Clinic General Internal Medicine (GIM), you could be referred to Rheumatology at Mayo, or if you get a definitive diagnosis from your primary at home, you should not have a problem getting in.

nikohl7 | @nikohl7 | Oct 12, 2018

In reply to @johnbishop "Hello @nikohl7, welcome to Connect. I'm sorry you are having difficulty getting an appointment at Mayo..." + (show)

I believe I would be able to get a referral. Today I called and spoke with someone who told me to send records to them regarding this condition and would either be approved an appointment or denied one, this would be the case even with a referral.

nikohl7 | @nikohl7 | Oct 12, 2018

In reply to @lisalucier "Hi, @nikohl7 - I don't work in appointments at all, but what I understand is that..." + (show)

I’m just afraid I’ll be stuck in the same situation. Closest Mayo Clinic location is an 8 hour drive from where I live. I’ve been seeing internal medicine in my home town, she believes I might have lupus however won’t make a diagnosis based on the fact my lab work as been inconsistent and negative for autoimmune markers, though I was on steroids when the tests were taken. I’m just afraid of having to go back and worth for multiple doctors visits, especially now with the current cardiac involvement that has sent me to the ER twice now.

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