Hi - I am looking for advice on what questions to ask and what specialist to consult. Since Feb 98 (5 months) I have had 5 episodes of what feels like the flu: headache, dizziness, fatigue, all over body aches, weakness, trouble thinking, some trouble focusing eyes. Also persistent ringing in the ears, which I dont know whether it is related or not. No fever, no stomach trouble or loss of appetite. Each episode lasts about 1 week, then I gradually feel stronger and can function for another 3 - 6 weeks. Each episode has felt very similar. Initially the Dr. told me it was the flu, but after the 4th time, they did some blood tests. No HIV, MONO, thyroid problems, Lyme disease, or white blood cell imbalance. They said they did a metabolic screen and it came back negative. They sent me to an allergist (?) and I have no allergies. I am new to this Dr. and I feel like I have to take the reins in asking questions and pushing for follow-up. Please give me some idea of the kind of specialist who might be able to disentangle this mess and some possible rule-out diagnoses and tests. Thanks so much.
Episodic symptoms of the type you complain are actually quite common. The vast majority of individuals who have these symptoms are found not to have any serious or life-threatening illness on extensive work-up. Their problem, however,is often extremely difficult to effectively treat, and the symptoms of pain and chronic fatigue can be very disabling. Chronic fatigue syndrome/fibromyalgia is a label used by several experts (specially rheumatologists) to describe a subset of such individuals who meet some specific clinical criteria. Extensive research has yet failed to clearly unravel the exact physical or psychological basis of this syndrome, and it remains a controversial one.
The clearly episodic nature of your symptoms is unusual, and brings to mind the unlikely possibility of a recurrent/recrudecent flare-up of an infection or inflammation, such as in recurrent aseptic (viral) meningitis. It is difficult for me to comment on the adequacy of your diagnostic work-up. I am sure you can benefit by seeking further opinions from a neurologist and a rheumatologist.
In case you live near Cleveland, these specialists at the Cleveland Clinic would be most glad to see you. You could call (800)223-2273, or (216)444-2200 locally for appointments.
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