Lupus diagnosis need help

Posted by dorrielee @dorrielee, Jun 11 6:24am

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.

@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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Hi @dorrielee, I'd like to add my welcome and introduce you to other members in addition to @gingerw, who are talking about lupus like @toomanyoars @djanthony @jewel8888 @oregongirl @kgoodwin9 and @ejlm. You may wish to read more in these discussions:
– Lupus or not Lupus?: https://connect.mayoclinic.org/discussion/lupus-not-lupus-lupus-not-lupus/
– Tumid Lupus with SLE Symptoms?

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.

Dorrielee, what symptoms and tests led to your being diagnosed with lupus? Does anything seem to trigger your symptoms?

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@colleenyoung

Hi @dorrielee, I'd like to add my welcome and introduce you to other members in addition to @gingerw, who are talking about lupus like @toomanyoars @djanthony @jewel8888 @oregongirl @kgoodwin9 and @ejlm. You may wish to read more in these discussions:
– Lupus or not Lupus?: https://connect.mayoclinic.org/discussion/lupus-not-lupus-lupus-not-lupus/
– Tumid Lupus with SLE Symptoms?

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.

Dorrielee, what symptoms and tests led to your being diagnosed with lupus? Does anything seem to trigger your symptoms?

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The pain, swelling, insomnia, and severe fatigue started last August. At first I thought I was working alot of hours but my joints were really bad. I had a appointment with my doctor for a check up and told him how I was feeling. I get seizures when I don't get enough sleep so he became worried about the insomnia. He ran a bunch of tests. I'm not 100% sure of all the tests he ran. But in a few days he called me that the tests shown that I had Lupus. He put in a referral to the rheumatologist. I went to see him but at the time I wasn't in a flare up. He did a couple more tests on me and came to the conclusion that I had fibermyalgia and not Lupus. At my next appointment about a month ago I was in a flare up and I have taken pictures of my hands and other areas that keep swelling up that's when he came to the conclusion that it was Lupus. He put me on hydroxychloroquine.

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Other symptoms I get are kidney pain. I would say that for the last 10 years I have continues went to doctor thinking I had kidney infection and the tests for infection always came back negative. I have had kidney pain most of my life and latley my kidneys have really caused me pain.

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@dorrielee

Other symptoms I get are kidney pain. I would say that for the last 10 years I have continues went to doctor thinking I had kidney infection and the tests for infection always came back negative. I have had kidney pain most of my life and latley my kidneys have really caused me pain.

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Ultrasound and xrays are in order. Have you had them?
You need a kidney specialist.

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@funcountess

Ultrasound and xrays are in order. Have you had them?
You need a kidney specialist.

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No I haven't had any of that

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@dorrielee

The pain, swelling, insomnia, and severe fatigue started last August. At first I thought I was working alot of hours but my joints were really bad. I had a appointment with my doctor for a check up and told him how I was feeling. I get seizures when I don't get enough sleep so he became worried about the insomnia. He ran a bunch of tests. I'm not 100% sure of all the tests he ran. But in a few days he called me that the tests shown that I had Lupus. He put in a referral to the rheumatologist. I went to see him but at the time I wasn't in a flare up. He did a couple more tests on me and came to the conclusion that I had fibermyalgia and not Lupus. At my next appointment about a month ago I was in a flare up and I have taken pictures of my hands and other areas that keep swelling up that's when he came to the conclusion that it was Lupus. He put me on hydroxychloroquine.

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@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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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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I think it’s a valid fear. All your feelings are valid. You’ll face a lot of fear and anxiety, if you’re like me. It’s the unknown and ignorance of others.
I meditate often and that’s the key for me.

Keep on keeping on! I’m on your side!

Liked by lioness

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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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Hi @dorrielee, I also worry and am a little fearful of the unknown when it comes to messages from my body. I think it would be good to seek help as soon as you are able to setup an appointment. Here are a few articles that provide more information on managing Lupus flare ups that I hope might be helpful.

Treating and managing lupus and preventing flares: https://www.medicalnewstoday.com/articles/323665
What can I do to control my lupus symptoms?: https://www.cdc.gov/lupus/basics/managing.htm
What is a flare?: https://www.lupus.org/resources/what-is-a-flare

Have you tried making an appointment at Rochester Mayo Clinic? If you need more information on the Rochester area and Mayo Clinic, I would be happy to help you find it.

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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

Liked by bustrbrwn22

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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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