Just trying to get a diagnosis…

It started 4 months ago with a low grade fever and overall feeling of what I thought was the flu. Soon I developed a swollen thyroid gland and was originally diagnosed with Graves Disease due to lab tests showing a non existent thyroid gland. I lost over ten lbs and felt like crap. They pumped me full of meds and handed me literature and sent me on my merry way. I had to do weekly labs to keep an eye on my TSH and T4 and my thyroid flipped to hypo. Severe hypo…. and I was so fatigued I could barely stay awake… then came the god awful nerve zaps and joint pain and racing heart at resting.

I started to forget things, how to spell my daughter’s name, how to write a few things, pouring OJ in my cereal and putting things in he freezer that belong in a drawer. I felt like a basket case and the frustration to just feel normal again pushed me the limits. I started to develop numbness in my legs… so then they sent me to Neurology because they thought okay maybe this is MS. I prayed it wasn’t MS. Did all sorts of scans and turns out I am not developing dementia and I am not suffering from MS.

Meanwhile, my joint pain has gotten worse as well as the fatigue. They did a few more labs and I came back with markers on my ANA and with my father have SEVERE RA they did not want to rule out RA and also think I have Fibro with due to the bad nerve pain. So they put me on Gabapentin and now Lyrica as well as decreasing dose of Prednizone and propanolol for my racing heart. It seems meds are the way of trying to cure everything.

Tomorrow I head to Mayo because I want a second opinion and a definitive diagnosis. It seems that I have no swollen joints but I show inflammation in the ultrasounds of my wrists and some of my fingers but the xrays show no erosion of my joints. I do feel awful burning pain in my fingertip joints when under hot water and sometimes when I work too much. My grip is shot and I drop things all the time. I cannot wring out s a simple wash cloth without pain shooting to my elbows and picking up my coffee cup is painful. I am RF negative but my father was seronegative as well. I really believe that I had a virus that kicked off this autoimmune nightmare. My thyroid has since corrected itself but I wake up in the middle of the night with this terrible stiff pain in my hands and arms and toes. I understand that it is important to catch this stuff early in order to get the best treatment. I saw what my father went thru with this disease. He had to retire early and was basically crippled up all over. I don’t want to live that way.

How long does it take to get a true diagnosis. I just want to start feeling like my old self. My ANA ssdna was well over 400, that with the inflammation and swelling in my wrist and fingers and awful pain and genetics I think should be enough to show that I exhibit enough history for that diagnosis.

Sorry rambling now… any thoughts out there in this RA world to give me a few words of wisdom? Thank you!

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