1. < Autoimmune Diseases

So few labs to show autoimmune disease

Posted by julieceann @julieceann, May 25 10:12pm

I have been to many specialist to rule out their area - neurology, GI, metabolic, etc. Mayo Rochester considered my case and referred me to rheumatology. All of the doctors in my hometown have profiled me as a mental case, but my counselor says no! She hears this all of the time in our area! I have all of the symptoms of anemia, but it doesn't show up in my labs. I have a lot of symptoms of connective tissue disease, but they mostly come and go. I was diagnosed with undifferentiated connective tissue disease but have not been helped much with treatment. I like hydroxychloroquine and it has helped some. I took/am taking a taper of prednisone and found some relief at 40 mg, but, oh, the side effects! The anemia-like symptoms persist with that deep fatigue.
Has anyone else had this problem of few lab proofs? But miserable symptoms? Everything with my PCP has become mental to her, making her the sixth doctor to profile me and patronize me. I had to insist on a referral to Mayo.

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artemis1886 | @artemis1886 | May 26 2:15am

It took them over 20 years to find mine.
One had a lip biopsy for Sjogrens tested positive.
Two went to the eye doctor and they did testing on my eyes. Normal persons eyes have 5 percent mine was less than 1 percent my corneas severely scratched up positive for Sjogrens. Started taking pictures of my face to show the doctor. I had the lupus rash.i felt so bad for two months crying in severe pain new rheumatologist I saw during this period did labs. I finally after 20 years tested positive for Sjogrens lupus hashimotos along with connective tissue disease. It showed in my chart in 2009 during my total hysterectomy lupus diagnosis.
So this March finally got my autoimmune diagnosis even though I showed all the symptoms.. Not one single doctor has treated me.

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Mentor
John, Volunteer Mentor | @johnbishop | May 26 7:13am

Have you seen the TED Talk by Jennifer Brea?
-- What happens when you have a disease doctors can't diagnose
https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

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1 reply
esgsf | @esgsf | May 26 2:52pm

Best video or TED talk I have ever seen on the subject! Three women in our family have been struck with auto immune diseases following viruses, and without self advocacy, we would not have gotten a diagnosis. It is taken from a minimum of 4 years for one, to 14 years for the youngest, and we’re now trying to help others to shorten that time. The hopeful news is that with the proper diagnosis and treatment, some quality of life is returning for each of us.
Thank you for sharing and let’s keep supporting each other on the path for diagnosis and treatment. This Mayo Clinic Connect community has been a tremendous source of insight and information.

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tammy01 | @tammy01 | May 26 3:52pm

I'm going through the same thing. My CU was very high but almost all of my labs comes back normal. I'm just getting back on my feet after mainly being bedridden for 3 months. I'm praying for just 20 days of relief, my body and mind is exhausted . When this happens to me I have abdominal pain nausea and vomiting then comes severe muscle pain then the disabling fatigue.
I'm really sorry that you have went through the unbelief of doctors and the titles they put on you because they can't figure out what wrong with you, I have also went through some of the same things. Last year after suffering at home for 6 weeks I finally couldn't find enough blockers to fight the pain and deathing sickness so I went to the hospital and one night at the hospital I got so bad I was crying I kept putting on my call light to get someone to help me for over a hour, finally I heard someone opening the door a nurse opened the door and said you need to quit down you are disturbing everyone and shut the door. I had to call my daughter and get her up at 2 in the morning to come to the hospital. I'm a quiet person mostly. She told me later that when she entered the ER door she could hear me crying, I was on the other side of the hospital. Things like that has happened to often to people like us.
I was a advance RN for over 20 years and loved my patients. But this disabling disease changed that also now I have to live on my disability and it sucks.

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2 replies
julieceann | @julieceann | May 26 8:19pm
In reply to @tammy01 "I'm going through the same thing. My CU was very high but almost all of my..." + (show)
@tammy01

I'm going through the same thing. My CU was very high but almost all of my labs comes back normal. I'm just getting back on my feet after mainly being bedridden for 3 months. I'm praying for just 20 days of relief, my body and mind is exhausted . When this happens to me I have abdominal pain nausea and vomiting then comes severe muscle pain then the disabling fatigue.
I'm really sorry that you have went through the unbelief of doctors and the titles they put on you because they can't figure out what wrong with you, I have also went through some of the same things. Last year after suffering at home for 6 weeks I finally couldn't find enough blockers to fight the pain and deathing sickness so I went to the hospital and one night at the hospital I got so bad I was crying I kept putting on my call light to get someone to help me for over a hour, finally I heard someone opening the door a nurse opened the door and said you need to quit down you are disturbing everyone and shut the door. I had to call my daughter and get her up at 2 in the morning to come to the hospital. I'm a quiet person mostly. She told me later that when she entered the ER door she could hear me crying, I was on the other side of the hospital. Things like that has happened to often to people like us.
I was a advance RN for over 20 years and loved my patients. But this disabling disease changed that also now I have to live on my disability and it sucks.

Jump to this post

I'm so sorry for your trouble. I keep thinking that I will go back to work but not yet. I pray for you relief, too.

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joann | @joanng | May 27 7:01am

I was on that route as well. I changed PCP's and now I am being treated properly. I also changed rheumatologists. Be with a DR that listens! I tried many drugs and found actemra injections once a week was the golden answer. I had to stop taking it due to MRSA in my lungs. But that was they key. I am currently on Celebrex with a small dose 8 mg daily of prednisone. I am managing. I have had the MRSA for over a year and they can't cure it so I most likely won't be able to get back on actemra anytime soon. At the time I started taking it, the drug was not FDA approved but I was desperate. I'm not sure if it is now but worth looking into. I hope this helps you.
Joann

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Mentor
John, Volunteer Mentor | @johnbishop | May 27 7:51am
In reply to @tammy01 "I'm going through the same thing. My CU was very high but almost all of my..." + (show)
@tammy01

I'm going through the same thing. My CU was very high but almost all of my labs comes back normal. I'm just getting back on my feet after mainly being bedridden for 3 months. I'm praying for just 20 days of relief, my body and mind is exhausted . When this happens to me I have abdominal pain nausea and vomiting then comes severe muscle pain then the disabling fatigue.
I'm really sorry that you have went through the unbelief of doctors and the titles they put on you because they can't figure out what wrong with you, I have also went through some of the same things. Last year after suffering at home for 6 weeks I finally couldn't find enough blockers to fight the pain and deathing sickness so I went to the hospital and one night at the hospital I got so bad I was crying I kept putting on my call light to get someone to help me for over a hour, finally I heard someone opening the door a nurse opened the door and said you need to quit down you are disturbing everyone and shut the door. I had to call my daughter and get her up at 2 in the morning to come to the hospital. I'm a quiet person mostly. She told me later that when she entered the ER door she could hear me crying, I was on the other side of the hospital. Things like that has happened to often to people like us.
I was a advance RN for over 20 years and loved my patients. But this disabling disease changed that also now I have to live on my disability and it sucks.

Jump to this post

Welcome @tammy01, I can't imagine how difficult it's been for you after being an RN and caring for patients for so long then to have a disabling disease change everything. As others have said, we are our own best advocate and learning everything we can about our condition and what helps is what Connect is all about.

I recently ran across another resource that might be helpful when you are having trouble getting a diagnosis.
-- Tips for Getting a Diagnosis of an Autoimmune Disease: https://autoimmune.org/resource-center/diagnosis-tips/

Hoping you get some answers soon.

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minglu | @minglu | May 27 10:43am
In reply to @johnbishop "Have you seen the TED Talk by Jennifer Brea? -- What happens when you have a..." + (show)
@johnbishop

Have you seen the TED Talk by Jennifer Brea?
-- What happens when you have a disease doctors can't diagnose
https://www.ted.com/talks/jennifer_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

Jump to this post

Thanks for sharing this. Though I have been recently diagnosed with stage 1 CLL/SLL, I have symptoms not associated with it that doctors have not been able to associate with a cause. Last week, I had another round of appointments and another round of eliminations. I was ready to give up, but my wife and one doctor have said keep going. This video has helped me see why. Again, many thanks.

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