Rheumatologist giving me the runaround?

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Shaylee3216
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/15/2017 10:00 PM (GMT -6)   
Sorry if this is a bit long, but some background: I had Guillain Barre(autoimmune disorder that affects central nervous system) almost 5 years ago. I am mostly recovered from that but have struggled ever since with chronic pain and fatigue. I would have a lot of pain and cramping and weakness in my muscles and was diagnosed with fibromyalgia 4 years ago.
Last year I felt I was doing better, I was able to lightly exercise a few times a week. However in the past year, I have been experiencing more and more pain in my joints and sometimes all the way down to my bones. In August I went to the ER for severe pain in my chest, was told it was just chest wall inflammation. I was still having chest pain, went to see my GP who referred me to a rheumatologist in September. The rheumy did some blood tests, talked about my symptoms(painful, swollen joints, extreme fatigue, facial flushing, migraines, morning stiffness, chronic pain in my chest, mouth sores). I had a positive ana at 1:320 with homogeneous pattern and a positive dsDNA. The way she talked at that appointment was that she leaning toward diagnosing me with Lupus. She ordered more blood tests. Ana test was still positive at high titer(I wasn't able to see the actual test result and she didn't say how high or what pattern), but dsDNA was now negative. So today she basically said all my problems are stemming from depression and lack of adequate sleep and that my symptoms are not true symptoms of an autoimmune disorder. I'm supposed to start Lexapro, see a sleep specialist, and go back in three months. I feel like she just totally invalidated everything I've been struggling with in the last five years. My husband thinks I should see a different doctor. Should I seek a different opinion or resign myself to the fact that this "all in my head"?

Post Edited (Shaylee3216) : 11/15/2017 9:11:41 PM (GMT-7)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7699
   Posted 11/15/2017 10:23 PM (GMT -6)   
I would do as the Dr suggested, but I would also search out a second opinion from another rheumatologist.

I suggest checking with the Lupus Org at www.lupus.org to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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