Do you enjoy watching House? Do you like medical mysteries and solving puzzles? Ok all my lovely friends and blog followers, I have seen seven different specialists that all agree there is something going on with me, but so far can not figure out what it is, so if you'd like to play at being House have a read over my symptoms, current diagnoses, blood test results and leave me a comment.
And yes I'm serious. Any ideas would be hugely appreciated, because right now with so many doctors at a loose end, I want to be proactive in my care but have also run out of ideas for what to test for/check next.
Current diagnoses: Dilated Cardiomyopathy. Current Heart function at 50%; low normal.
Polycystic Ovarian syndrome along with Insulin resistance
Sinus and supraventricular Tachycardias
Fatty Liver
Current symptoms: These come and go and last up to a few weeks at a time:
Extreme fatigue and lack of energy
Aching limbs to the point it hurts to move
Upset stomachs
Increased resting heart rate to 110, up to 180 with activity
Current tests; ESR; 80 (abnormal inflammatory marker)
CRP; 45 (More sensitive marker for inflammation, also abnormal)
Slightly Abnormal liver function tests
Tested for Celiacs, negative. Tested for hepatitis, negative. Tested for Lupus negative. tested for arthrits, negative.
Cardiac MRI shows a drop in heart function from 58% to 50% but still a lot better than when I was diagnosed with heart function of 35%
Most doctors involved think it is autoimmune, but don't know what.
If I remember other symptoms or tests I'll edit this later, but so far off the top of my head this is it. Thanks everyone!
Have they ever tested you for addisons disease?
ReplyDeleteI wish I had an answer for you. I had a lot of the same non-specific stuff going on for a long time (the SVT, elevated ESR and C4, + ANA, and the heart thing). First I was told I had Fibromyalgia, but I didn't think that fit. Two years later, I started with the severe joint pain, fatigue, rashes from sunlight, and was diagnosed with Psoriatic Arthritis and probable Lupus. Autoimmune diseases can take years and years to manifest into a solid diagnosis, meanwhile we feel like we're going out of our minds. Several PPCMers are going through the same thing. Not every autoimmune condition can be named exactly. The tests they have are good, but not great. I'm sorry you're going through this. The only real advice I have is hang in there, take things as they come, and don't give up on answers no matter how frustrated you get.
ReplyDeleteHas anyone in your family had Rheumatoid arthritis? This can manifest itself as joint pain but also causes other symptoms.
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