I've posted under Neuro but find myself here for reasons I've seen before...I, too, have been through test after test to try to find a diagnosis for a myriad of symptoms...Can you all advise me?
Bottom line - how do you find a doctor who "specializes" in Fribro/CFS? I've experienced horrible fatigue for years - but docs all said, well - you have a lot of stress in your life (quadruplets, financial woes, crazy schedule, etc)...so just accepted this is the way it has to be. A year ago, my body crashes - HGB was 7....was hospitalized and given blood transfusions, then iron infusions...GI scopes came up 0 for cause of blood loss. After many months diagnosed with 2 kinds of Anemia - Pernicious and Iron Deficient. Given Lupron (6 mos now) to induce menopause 'cause blood loss narrowed down to hemmorachic (sp?) periods. Fatigue now debilitating...neuro symptoms including tingles/twitches/spasms, slurring, blance problems, etc. Doc has been wonderful, testing anything we or others can think of - all negative for Thyroid, Addisons, Lyme, Rheumatoid, Sprue, other obscure diseases too numerous to list. MRI of brain, ultrasound of heart, gallbladder, CV stress test...all negative. All Neuro tests so far have ruled out MS, dementia, etc. PT for ataxia seems to be helping some...but still have poor muscle control in legs (take stairs one at a time going down...up is okay). Neuro did extensive Neuropsych tests, all came back fine. PT's found ataxia, guarding, decreases motor planning...Neuro says she finds nothing her in office exam...says it's stress. Argh! Ruled out psych meds (Desipramine, celexa)...
Approved for disability under "fatigue"...Have been given Ritalin for energy but only benefit is that most days I am awake/alert all day without napping. Fatigue comes and goes in intensity, but overall awful. Finally, years ago diagnosed w/osteoarthritis in hip. Now experience constant pain in hip, knees, right shoulder and occasionally jaw, wrists, knuckes. Vision seems blurred, even with glasses - tho' usually if I concentrate can focus.
Mom (aged 65) diagnosed with Fibro a couple of years ago after years of being shunted to the side/considered neurotic with psychosomatic symptoms - tho' multi psych professionals wrote testamonials to say she wasn't crazy, depressed, etc., and cause must be physical.
Sooo....anemias are "under control" with treatment, yet symptoms persist...fatigue and now joint pain being the worst of it. Where do I go from here? Ready to just give up....really.