Hello, my story, doctors in Ohio, anyone?
Hi all, glad for any advice you can reply with, or PM me. I'm in the Columbus area but willing to travel if appropriate. A brief summary - I could go on for days (I think maybe I do...)
I'm a 40 year old guy in pretty good shape, all things considered. I've talked to MANY doctors about all of this, and am getting VERY frustrated with the attitudes I'm facing. Mostly I'm offered pain meds and other symptom relievers which accomplish neither, really. Seriously, my GP has ended our last two visits with "are there any pain meds you'd like to try?" Well I don't know man, you're the doctor here.
I have mostly refused, though I'm trying tegretol now. I don't think I can do my job on this stuff. None of them work anyway, seems like this one included. It dulls it a bit. I feel I am deserving of some further testing. I've been seeing this doctor for maybe 15 years, and have never been a big consumer of his services.
I'm not bleeding and am fairly coherent and so am dismissed as neurotic/anxiety/stressed, who knows.
* Nightly "brain fog" and (what I'll call) paraesthesia. It began as a tingling in my right eyebrow last fall. It has since then spread "in to" the eye, up the forehead, and back along my scalp. It is not a *headache* as several doctors like to call it, but a maddening sensation of ... tingling ... a rubber band around the area ... a feeling of significant swelling as well. Except that none of it is physically visible. I've had many "headaches" before in my life, and whatever this is, it ain't that. At this point I'm very fatigued and am disoriented every night as well. It is alarming!!
Pain relievers do very little for it. It's like I have a bowling ball strapped to my head with a somewhat knobby rubber band that just happens to not exist. Not especially painful. I just want to take it off once in a while, that's all.
* Vertigo that hit me in my early twenties, really curtailing my driving. This seemed to disappear for many years, but returned with a vengeance about five years ago. Some afternoons I feel close to a fall when getting up and walking, say, to my car. I have avoided driving my kids on vacations for many years now. It comes and goes randomly, but is guaranteed to make an appearance before long on any highway, and then does not abate. There is no history of trauma here, no associated anxieties ... tried the psych route several times, no help.
* Asthma diagnosed around that same time (in 20's), when it very briefly landed me in the hospital. It has not really attacked like this since my twenties (or maybe I take better care of myself,) though I've asked for albuterol to have through a couple of worrisome chest colds. Once you've felt asthma you're very inclined to avoid it in the future.
* An array of mild-moderate GI symptoms, ongoing since about that same mid-twenties timeframe. Your basic IBS-type stuff. Oh, and an apparent kidney stone a few weeks ago, hematuria and everything ... never did see a kidney stone, or any follow up from my GP despite asking. Unrelated, I don't know.
I've seen the GP, a neurologist, ENT, ophthalmologist, and a neuro-opthalmologist on quite a few occasions. Two MRI's with contrast, a sinus CT. I agreed to let the ENT perform FESS/septoplasty this June, though I didn't really have any sinus issues. Well, now I do, and they didn't find anything. Normal flora. But hey, you could drive a train through there now. Some minor supratentorial focal lesions (a little larger than grains of rice perhaps, if I know what he's talking about?) that haven't changed over the last year.
So I've had all these wonderful profitable imaging studies, but only a couple of CBC's and a blood panel. Both showed slightly elevated white counts (12-ish?) with fluctuating neutrophils and then a right shift a month later. No one is interested in following up on those. No interest in a CBC post-FESS and a month of Omnicef even.
I feel stuck in a rather broken diagnostic/surgery profit machine.
To my uneducated eye, I'm not inconsistent with any number of things at this point, up to and including MS, Lyme, or even some far less complex disorders. I have endured nights and months of torture, lost many weeks with my children, waiting for appointments 2 months in advance only to be poked in the forehead and told I'm super-fine. No big tumors or abcesses on the images, see ya. They have "eyeballed" me as Trigeminal Neuralgia, Atypical Face Pain, headache, done, everything else ruled out, see you later??? I just don't understand it.
What I really do NOT want is for this to have to deteriorate further to get on a clinicians radar. The next step cannot be good, I have a feeling. What to do?
I'm in the market for a new doctor anyway, as you may have guessed. Thanks for listening if you made it this far.