Hi all! I would appreciate any advice or guidance. Thanks in advance!
I have been pursuing a diagnosis for years and am feeling at a loss again. I had mono when I was 16 and became very sick. I have what we call "mono flare ups" and my immune system is very weak. I am hospitalized at least once a year and can't fight things like a cold or strep without complications. When I was 22, I started seeing a gastroenterologist because I pain constantly in my side and severe sensitivity with food. My gall bladder was removed in 2015 and my appendix in 2016. Both organs caused extreme pain but I was told that it was odd because the damage seen in both were only showing the start of disease. My GI issues stopped in mid 2017 when I began a vegetarian but have since returned in early 2018. I was diagnosed with fibromyalgia last year as a "stepping stone" towards getting more support and another diagnosis. It started with widespread pain in the majority of the tender points, extreme fatigue, and migraines. I had three referrals to a rheumatologist (two from an internist/PCP and neurologist) that were denied because of the fibromyalgia diagnosis. My new internist/PCP (my previously one left the practice unfortunately) changed my diagnosis after I had a bad flare up that appeared to stem from a bad sun burn while on vacation. I developed severe GI issues (worse than my previous issues), constant migraines, extreme pain in the muscles and joints, unexplained fevers that come and go, and a butterfly rash. My internists/PCPs (the previous and current), physical therapist, and several other health professionals in my life felt lupus was very likely the diagnosis. I finally get into a rheumatologist who dismissed the majority of my symptoms and health history. He met with me for less than 10 minutes and told me that unless my bloodwork comes back positive/abnormal, he would not be able to help me. He stated that the bloodwork would rule out all autoimmune diagnoses and I should see a immunologist or accept that I just have fibromyalgia. I told him I'm fine with fibromyalgia diagnosis but given that I get sick constantly and am running mystery fevers, I feel that something else is going on. I specifically asked if being sick/having poor immune system and fevers is associated with fibromyalgia (which I already know it isn't) and he said no and promptly left the room. The bloodwork ordered was the following: TSH, serum, or plasma; erythrocyte sedimentation rate by Westergren Method; rheumatoid factor; CBC with auto diff.; antinuclear antibodies screen, IFA, serum; and c-reactive protein, quantitative. My bloodwork came back fine so I'm back to square one with more questions than before.
I'm worried because I can't seem to get a provider who will treat me as if I am not a typical patient who presents issues typically. I'm also really disgruntled because I'm skeptical that bloodwork would really rule out the 80-100 autoimmune disorders. Has anyone had any luck getting answers/diagnoses without bloodwork confirming the diagnoses? Has anyone had similar situations? I've been told by previous providers that I'm "too complex" to treat so they recommend me going to the Mayo Clinic, Cleveland Clinic, Johns Hopkins, etc. for testing and answers. I really can't afford that (given I'm in so much medical debt already), but is that really what I need? Can I not get answers any other way?
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