sheer frustration and self diagnosis

Remember the old Carly Simon song, Anticipation? Well, just replace that with Frustration.... any which way you like and I have sheer frustration with the medical community! I am not a doctor but between my own health and having given my mother her end of life care for emphysema for a year, they've all taught me well! In their ineptness, lack of personal care or over concern for fear of lawsuits, they've overtested, forgotten to listen and missed diagnoses. Every doctor I encounter always asks, are you a nurse? No, but I ought to be by now... dang! Instead, I have MS and I'm dependent upon the very people I see not care much about the people their sworn to care about! It's sad, it really is.

I have a battery of doctors I owe my life as I know it now to. I have a wonderful internist PCP who's willing to admit her mistakes when makes them, seek more knowledge when I come up with diseases she doesn't know like this MonSter and mixes her Easter medical knowledge with her western training for me which I love her for! Best of all, she really really listens to me when I talk to her and she trusts me and my judgment about my body! You gotta love your doc for that! She gets my doctor of my life award for that!

I have a cardiologist at a hospital who I'll never see again nor finish paying nor care about paying becos he wouldn't listen to me, nearly gagged me to death with the ultimate heartburn cocktail when I explained I had a frozen vocal chord and my MS Hug WAS NOT a heart attack! But keeping MY head about me kept me from ripping HIS off!

I have my own cardiologist who's fired me cos I'll never be able to pay him back, whom I love for his candor, care and friendship that I never should have never had to use because I have a neurologist who is too cautious because he didn't think far enough to consider the OBVIOUS: medication.

I have an Ear, Nose and Throat specialist who didn't understand why ONLY ONE vocal chord was frozen and I sat down and shed a tear or two when he said, "right side" when I asked again, "which side?" My always-the-right-side that is has a multitude of numbness, spasms, paralysis in other areas etc and now the vocal chord - an autonomic function I can't fake (if I were to.)

I have dozens of techs in various testing sites to attest to a variety of symptoms I've experienced i.e. "she stopped breathing while engaged in the EEG" , another autonomic function failure I'd been reporting to my neuro but he didn't seem to think was very serious and only listed in my notes as, "Ms. Willis has a lot of complaints!" As though I'm a hypochondriac!

While experiencing heart attack like symptoms which ultimately turned out to be the MS hug, hospital personnel hardly knew what to do with me at two different ER's. MS Hug? Now say Heart and they're in action but not listening... talk about needing a muscle relaxant to get your chest wall to let you breathe and they look at you like you're speaking greek! How in the world would a patient have any idea what THEY need? What a novel idea! It took 3 months later and a week of two visits with tne neuro (and a phone call to my BSN.RN girlfriend) to figure out an old drug, Skelaxin might (and DID) work! I already had Flexeril and Zanaflex and they didn't touch it... thank goodness for old drugs!

And now the ultimate insult in medicine... Restless Legs Syndrome is agony for me every single night but ever more so when the weather changes and storms approach. I always use to take a natural product with Quinine in it by the Hyland folks. My neuro suggested Mirapex. More consistent he said. So I did, and eventually needed to be up to 1mg per night every night.

Then about a year ago, I began to experience sleep episodes during the day while driving, working, anytime! Very scary episodes! I would suddenly close my eyes though totally aware behind my eyes that my eyes were closed and I'd be literally chanting to myself "open your eyes, Deb, open your eyes!" like Sally Field to Julia Roberts during that diabetic crisis in the beauty salon that day she crashed. And then, the horror registers: on one occasion I was literally going through a busy intersection in town at the time, another time I was crossing the peak of the Skyway Bridge and veering for the outside wall from the hammer lane (I'm always in the fast lane, or used to be til this started), or I'll be driving to Ochochobee to my friend's house only to wake up facing oncoming traffic in time to veer to my own lane and I pulled off to have good cry and shriek about why?

And so it went, month after month, test after test, more meds... we added Adamantium to boost the Provigil and it helped a bit for a while then it all crashed in again. We stopped the Atarax for the itching, so I'm scratching more but still can't stay awake. I missed a Daytona opportunity because I couldn't drive across the state alone! I had heart monitors for a week and nothing out of the ordinary recorded and finally I had the ultimate insult: a portable freaky looking set up, the EEG for 3 days. And NOTHING out of the ordinary was recorded.

So when I walk into my neuro's office and sat down to read about the wonderful drug I take for my Restless Legs Syndrome ONLY to learn it IS MY PROBLEM, I was incensed. I held up the literature with the big bold letters on it and faced my neuro: Falling Asleep During Activities of Daily Living: Patients treated with Mirapex® (pramipexole dihydrochloride) tablets have reported falling asleep while engaged in activities of daily living, including operation of a motor vehicle which sometimes resulted in accidents (see bolded WARNING).

The neuro whom I respect greatly but I think is sick of dealing with my MS and all "my complaints" just looked at me and said I guess we have to take you off that then. And so we did over the next week and he wanted me to call to be put on something else but nope. Forget it, I'm going back to quinine and living with it. Life was safer before another danged prescription!

Geez, somehow it'd be nice to have had this discovered nearly 18months ago and not had my life shot down by all this garbage over a med reaction! Go modern medicine, yep, I'm impressed! NOT. I'm disappointed they don't apply the same simple principles I learned in stock car racing, remember to check the obvious first, THEN look for the mysteries!