Help me get a correct diagnosis!

[Reinalnda]

In 2007 I was diagnosed with Mono. After a month my symptoms were supposed to disappear went back to the doctor after 2-3 months and told her that I was still exhausted all the time and having random flu like symptoms with no fever. She told me it was Chronic Epstein Barr and that there wasn't much to do. I've not been the same...This past July I got really sick. High fever,weak,exhausted (sleeping 18 hrs)aches,sweats,and chills. After blood work I was diagnosed with Lyme Disease took 30 days of Doxycycline. It helped temp. but my fatigue is still really bad with body aches and daily headaches. I've seen an Infectious Disease doc who found nothing abnormal except I'd had CMV and Mono sometime in my past. Found out Lyme test was false positive.He recommended I see a neurologist for headaches and rheumatologist for possible autoimmune disorder. Ever since 2007 my immune system is weak. I get viruses and infections a couple times a year. I saw the neurologist who did sleep study to see if something else was causing fatigue. Results say my sleep is 90% productive and no apnea or narcolepsy. Fatigue is so bad Have to nap at least once daily on top of 8-10 hrs sleep. Just saw the Rheumatologist Fri who did tests for MS, Lupus, and Rheumatoid Arthritis- xrays of my knees. Everything normal except that my inflammation levels are "too high to ignore." I'm now on 12 days of Medrol. He told me that I would be jittery, hyper, moody, and snap at people (I've had none of those symptoms at the higest dose) and I would say my fatigue is worse than its been in awhile. I stopped drinking caffeine over a week ago, quit smoking 4 months ago, and doubled my water intake. He says if the symptoms come back after I finish the Medrol he is leaning towards a diagnosis of Fibromyalgia. But that wouldn't explain my weakened immune system. I would love to hear other opinions!!! And ask any questions you may have...my post is probably all over the place...thank you!!

[Reinalnda]

Hey selma! Thanks for the info. I looked into Hashimoto and it looks like there are tons of those symptoms I don't have. But it can't hurt to get another thyroid test and see if they did T3 and T4 testing too. I appreciate your help!!

[selmaS]

  Hi I also have Hashimoto's and it was missed bcuz of the testing they were doing, if they only  look at ur TSH it can appear ur thyroid is "normal" when in fact it is not...make sure they r doing the free T3 and free T4 and TPO antibodies along with TSH....Hashimoto's is an auto immune thyroid condition not a regular thyroid issue so it is important they look there , plus it cycles....u may be tested when levels r ok....but u can go from being hyper to hypo...a ultra sound of the thyroid is helpful in dxing Hashi's too.

Good luck

[Reinalnda]

Thanks annale!! Yes, I've had my thyroid checked by every doctor I've seen and that's what makes this so frustrating! Every single test that I've had comes back normal except my inflammation levels are through the roof. I'm exhausted all the time and ache all over :( but thanks for your advice!!

[annale56]

Did you check with the Dr about the thyroid problem?  I had the similar symptoms like yours and finally my Drs found out that I have the hypothyroidism with the hashimoto's disease. An in order to control my headache, I have Keppra that is prescribed by my neurologist.
Hope that my info would help you a little.