I Have Myasthenia Gravis
I'm a snarky forty two year old mom of 3 who is happily married 20 years now. My diagnosis was a couple of days ago. As a singer, vocal teacher, freelance writer and long time radio personality, I began having difficulty with my voice eight months ago, and, thinking it was related to some mild allergies (though I've never suffered them..HEY...the pollen was crazy this spring), I waited six weeks before seeing a doctor. Soon, though, became clear to me, due to my years of professional training, that the problem was a muscular weakness. That's what finally got me going to the docs, whom, in general, I am known to despise on principle.
My doctors, however, were loathe to believe what my classical vocal training clearly told ME. (This is why I love them so.)
So began the shuffleboard game of Ren.
As doctors of any ilk do not like to admit ignorance, they authoratively treated a number of other highly unlikely afflictions: strep infection..though there was no inflammation and I had no symptoms, acid reflux (though I had no symptoms and there was no inflammation), you name it. I am rather surprised actually, that I did not get a referal to a podiatrist. (There is one doctor whom I am sure was coming close, as he had a curious fascination with looking at my shoes.)
I saw an ENT several times, and a speech pathologist, whose assessment intuitively stated; "There is certainly something inherently wrong with Mrs. D's voice".
Ya think? The woman was pure genius.
I wonder what I paid her.
So on it went. I spent my summer barely able to speak by noon in the day..and I took antibiotics until I was toxic...though my bloodwork was clean. I continued a verbose vocal training program that did nothing to strengthen the fine muscles of the voice, despite my expertise in the field. I reduced my student load and pulled every trick that my many years on stage had taught me. (You know, next time you see a singer in a band..appreciate the commitment..when you consider that he/she never gets to take time off. I have played with pneumonia, strep throat, and even within eight hours of a miscarriage. It aint as fun as it looks).
I took acid reducers that made me sick. I took more antibiotics with steroids. SIck sick sick from meds to treat conditions with no symptomology to support the diagnosis' in the first place. And I got more frustrated.
Eventually, I insisted that it was clear that there was no pathogenic or mechanical reason for the "hoarseness" (they were loathe to use the term "muscular weakness") and that I should see a neurologist. WHAT, after all... was left?
The last doc listened patiently and then insisted that have a pharyngial scope done. I refused it. Taking HAv I haveI He l I ac SOme Som
He Some would frown on it, but I said something to the effect that noone would be sticking anything more down my throat without first buying me dinner.
He looked at my shoes one last time, and dismissed me from his care. Once I got the bill...I realized I had bought HIM dinner. That yanked my chain, to be honest.
SO many docs and treatments, and too many idiots refering me to yet more idiots. I became completely disgusted. So..taking matters in my own hands...I did something I loathed:
I visited the local quack.
You know the guy: Everyone who leaves his office has a sample bag of pharma which is likely worth a good bit on the street. This is the guy with the nasty waiting room whom you never trust to diagnose anything more than a cold, but on whom you can count to give you as many presc
After an excruciating hour and a half in his clinic-style waiting room, I was in.
I went for it.
As soon as he opened the door I said:
"Doc, I am not here for a diagnosis." (Frankly, I did not want him to touch me.)
His formidable eyebrow hair raised six inches at this.
'What I want from you" I said, "is a referal".
I was amazed to see him look at my shoes.
"You do?" He asked.
"I do. I should tell you that I'm pretty pissed at anyone dressed in white (and looking at his lab coat..it was a loose color interpretation) at this point, and I'm not leaving without one. Merry Christmas". (It was September).
He asked why. He looked at my shoes again.
I told him.
He made the referal. Pretty much anything to get me out of his office quickly, as I saw it.
I asked him for the necessary orders for bloodwork. I got them, of course, and was on my way. That was 30 days ago. As I requested, he tested for the various indicators for MG, as symptom checkers kept bringing it up for me online. (I've learned, by the way, that if you want to **** off a doctor, be sure to tell him you've been looking up your ailment online. It's sort of like telling a postal worker you use e mail).
A follow up call told me that the bloodwork came back clean again. But I had a referal and I was scheduled, finally, for the RIGHT kind of doc.
After months of shuffleboarding doctors, I ended finally up at my appointment with a neurologist who clincally confirmed Mayasthenia Gravis... officially, just days ago...and a confirming diagnosis on my sleep disorder. (halleuah!!)
He spent an hour and half on my clinical exam and medical history. (Can't wait for THAT bill!)
He was credible with me from the word go, by diagnosing the sleep disorder first. Understand that I had been misdiagnosed for 42 years. But he nailed it, first go. You see...with hyposomnia, it's the opposite of insomnia. Insomnia means difficulty going to sleep or a poor quality of sleep. With Hypsomnia, one gets only 1-2 full REM sleeps a night... (vs. the 6-8 cycles the brain absolutely needs). This adds up to about three hours at the most, before one wakes up fully alert.. though not as a result of anxiety. For me, this happens the same time every night. Every 2-3 weeks you get a "fall down"..wherein the body refuses to function any further, and you sleep like a narcoleptic for a full day, only to repeat the cycle. Though I suffered from this even as an infant, and began joking about it in early adulthood, I was pretty sure by last summer that I was being abducted on a regular schedule by aliens. (True alien abduction people are encouraged to understand that this statement is facetious in nature, and not an invitation.)
Because of the sleep disorder, and its worsening, (and the docs who would not believe I was actually sleeping so little), the level of weakness and fatigue I felt..I attributed all of that to chronic sleep deprivation. Though an event last fall, that mocked a thyroid storm in almost every way after overheating doing heavy yard work, began to get me wondering. In retrospect, I could have started my onset even then. But as I've said: I have an aversion to doctors.
The neurologist I deal with is very attentitve and I am impressed that for the first time, I had someone extremely qualified to identify my sleep disorder and not allow the symptoms it causes to interfere with looking deeper into my other health issues. People underestimate the crazy things that sleep disorders can do the brain; especially those which are as severe as mine. That he can view this as a separate and equal concern, and tease out the tangle of symptoms that both health issues present, has me most confident in his diagnosis. All the bloodwork and scans, wire in muscle etc. come next. Though my inital bloodwork was negative to ACh, the differential was clear. He did not look at my shoes. I watched that man like a hawk. Never once did he look at them.
I did not present ocular and showed no other weaknesses, except a heaviness in the chest and loss of vocal function that became progressively worse as the day wore on. Again, I'm a mom with three kids under twelve who owns two businesses and has spent the last ten years helping my husband recover from a near fatal vehicular accident. In general, obsessive lunatics like us ignore absolutely everything our bodies do to tell us to slow down. If we're sick..we tough it out and go to work anyway.
though not built like an Amazonian warrior woman, I have always been exceptionally physically strong and highly energetic. I could lift, push, pull, and do all the things any man could..usually better. (RRRROAR).
I could haul heavy equipment, shower and put on a suit to go to a chamber function then Jam with my band four hours a night, tear down the gear and go to work four hours later, which was morning. I was the one who would work multiple jobs, go days at a time without sleep to take care of business at home, and handled all the household duties, et. al. There was no such thing as a sick day, a day off, or a full nights sleep. EVER. The workaholic who can't sit down long enough to watch a movie, even. I went to bed at midnight and woke at 3:34 every morning without an alarm clock for 20 years. YOU try that. Yea. It stinks!
But this last year, my sleep patterns were worsening and my fatigue was exceptional, even for me.
Sleep deprivates know one universal truth: You never know how tired you are until you get rest. (The aliens told me that.)
Clearly, my fatigue was not due exclusively to sleep deprivation. I was becoming weak. And THIS doctor was the first person who actually listened to me.
Sometimes, getting your way in things aint the greatest.
Tuesday, the doc confirmed a lifechanging diagnosis. Most would think I'd have been crushed, but after all this...I was glad for an answer. Until then, it was like stabbing at an attacker in the dark that seemed to come from all directions. Every effort was wasted, and in flailing about aimlessly, I could have been hurting myself. His confirmation was like turning on the lights, and, suddenly, I had a chance to finally say: "Oh! THERE you are!"
Now at least, I know what I'm fighting. It's called MG.
But then, It's still a bad thing, of course: my 20 year career in music, voice overs and radio is over. I will never take the stage again. I trained as a vocalist from five years old. I played in my first band at 15, lived on the road, opened for Pat Benatar (well, it was cool a long time ago) and made my living as a musican, writer, and radio person. My professional idenity, heck, my PERSONAL identity, is now gone. Before this diagnosis I could tell myself I just needed the right treatment to get better. I
It's different ...and more final, now.
Of course, living in the same town where I did radio, there are always people to ask me what I'm going to do now. I left the airwaves to strictly do voice overs a while back.. and these kind people still express their appreciation of my old show...which was a curious mix of classic rock and conservative politics, in a call in/interview format. So they ask with complimentary frequency when I am coming back on the air.
How do I answer that? They have no idea that I am sick. they just think I dissappeared from the scene to "be a mom". Their interest in me still is nice.. and of course I appreciate it. It's nice to be remembered.. and wanted back.. but not now.
Since my diagnosis it feels sinister to me, as it's a constant reminder of something I've not yet come to terms with.
And damn... I was GOOD. ;)
All of this came crashing down as of a few days ago. My professional life as I knew it is already over. I never even had a chance to tell it goodbye. This is something I still can't say out loud... even in a hoarse voice. I just can't bring myself to accepting it.
It is what it is.
I began taking meds that have me feeling incredibly ill and feel like I am physically falling apart. I can still function, but I find that with the meds... I have to rest. This just kills me. I never HAD to rest like this. I could FORCE myself if I had to. But not now.
My biggest worry is my family, who desperately need me to be the mom I have always been. I had a mom who was diagnosed with advanced and severe RA at 30. I literally grew up as her caregiver, and she was NOT a nice lady. I lived, ate, and breathed her disease 24/7. I avowed I would never put my children through the same guilt riddled "I am healthy and my poor mom is not" syndrome, the heartache, and the endentured servitude. So I am processing much of this myself.
For the fist time in my life... I am at a loss what to do next.
Obsessive workaholic control freaks who are regularly visited by aliens really hate this.
Without being falsely whimsical, I CAN say this: if you had to draw your own affliction out of a hat... MG is not the worst you can get. And if not me, who else? So I don't say "why me?". I just view it as instant karma. Or maybe a test. The irony of this disease attacking my voice..it's not lost on me. Some of my political caller nemisis people may be enjoying this immensely before it's all over.
Perhaps rightly so.
Maybe at some point I will break down and cry. But at this point, I am typical Ren: coming up swingin'. And my children still have no idea I have this disease. I minimized the full scope of it for the benefit of my husband. I am gearing up for the family meeting that brings this nasty bit of dirty laundry out.
'Kids, it's pizza for dinner. And I have a disease that could mean financial and emotional ruin on the family. Pass the canoli."
I came to this site to see what other people in my shoes are doing to help their families deal with the impact of MG..and to find out what to realistically expect.
I don't know how this story ends: it's just beginning.
But I do have to add one more thing; a "postsc
Before leaving the neurologist, I expressed my dismay at the fact that these other "idiot" doctors kept looking at my shoes. I felt comfortable and confident with this man, and we'd already spent a great deal of time together. So it just sort of blurted itself out.
WIthout looking down, verifying my impression that he missed nothing, he said:
"You're wearing two different shoes. They are similar, but the left is light blue trim, and the right is light grey trim. Otherwise, they are the same. Could happen to anyone as busy as you".
This time, I did the gawking downward.
"I'll be damned." I said.
