Lupus diagnosis need help

Posted by dorrielee @dorrielee, Jun 11, 2020

I was recently diagnosed with Lupus and I'm in Mason City IA. There is only 1 rheumatologist here. I was wondering if mayo is a better fit for me. It takes about 4-6 months to get into see him. I've been getting flare ups and to be seen by someone I have to go to ER.

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@dorrielee

I'm very scared about all this. I've always been very in tuned to what my body is telling me and many that's what worries me the most. Because right now my body is screaming at me that there's something wrong. But I don't know if it's real or a manifestation of my fear.

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@dorilee Keep a positive attitude that it won,t be as bad as you imagen. A healthy attitude is the key to our health and how we feel. The only fear we have is fear itself . Someone famous said that ,can,t remember . Don,t give your power to this . Take care and let us know how it is going .

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@gingerw

@dorrielee I have found keeping a journal of symptoms, when they occur, how strong they are, time of day, your activity, etc. may assist you and your medical team in figuring out what is going on. Can you do that?

When I was diagnosed with lupus in 1988, it took several months, while they narrowed down disorders. Each battery of test results determined what they would do next. I have no idea if things have changed since then, but my guess is "yes" for how lupus is diagnosed.

We look forward to hearing about your journey to Mayo Clinic.
Ginger

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@dorrielee In my family, we have a bundle of DNA issues, including Lupus, multiple myeloma, LECT-2, Gelsolin, RyR2, FKTN, and several others. One thing we have learned the hard way. That is, almost any of these issues can appear to be the only issue you have and localized (your only disease and in one spot), but in reality may be systemic (spread all over your body or organs) or only one of a bundle of diseases. My point is that one must always be open to additional diagnoses, or mutations. Many folks find this the most difficult notion to accept. We have had several deaths from these diseases, and each one from a different package somehow. What do you do about it? As Ginger says, track your own symptoms, signs and details. I have gone very serious about this (maybe too much). If you want to see how I do it, you can see it or download it free at https://bit.Ly/2jtypp9 under "Gelsolin". I get no record of who takes it or why. The most important portions, in my case, are the lists of diagnostic issues and the timeline showing my age when these issues become apparent. i.e.; the first cardiomegaly was noted at age 19, but the first enlarged lower lip was noticed by my wife just after my 80th birthday. SHEEESH!

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@gingerw

@dorrielee Welcome to Mayo Connect. Your town is less than 100 miles from Mayo Clinic [Rochester, MN] campus. My vote would be to go to Mayo! Knowing you have limits to getting in to see your specialist, I think you would find Mayo Clinic much more responsive.
507-512-3059 is the phone number.
I hope you call and arrange an appointment. Will you come back and let me know how you are doing?
Ginger

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Things have gotten so much worse. I need to make a appointment but not sure how to go about it. Do I need a referral

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@dorrielee

Things have gotten so much worse. I need to make a appointment but not sure how to go about it. Do I need a referral

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@dorrielee – If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. You don't need a referral but it may be helpful if your doctor will do a referral for you.

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It stinks. NAFL Disease. Stage 3 kidney disease. No energy. Breakouts. Yuck

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@vikingwoman

It stinks. NAFL Disease. Stage 3 kidney disease. No energy. Breakouts. Yuck

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@vikingwoman Welcome to Mayo Clinic Connect. You have come to the right place, to get support and information!
We moved your question to this related discussion so you can connect with others like me
– Lupus diagnosis need help https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/

I was diagnosed with lupus in 1988. It took quite a bit of time to go through all the testing back then, as they eliminated one thing after another. For years the high protein I had was attributed to the lupus, but it turned out to be a rare kidney disease, instead.

The fatigue and flares can really be tiring. What medications are you on at this time? How do you plan your day? I am here if there are any questions I can answer for you.
Ginger

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