I posted the following about pushing my doctors to begin treatment, after a sever MG crises, one that I fought home alone, two months before my Myasthenia Gravis diagnosis. I did go to Urgent Care at my medical group, but the doctor sent me home with antibiotics---to 5 days of hell. I though I had a sinus infection.
The state of my diagnosis in mid-November 2013 was a positive blood test. My primary care doctor refereed me to a neurologist in the group. The earliest appointment I could get was the first week in February 2014.
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Think about this for a moment. My doctor knew I had MG in the second week of November because of my positive AChR-ab blood test. He also knew that I had a major MG crises, yet my treatment was not likely to start until the first week of February. What was my doctor thinking?
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By November 22nd (just before Thanksgiving) I was having increasingly more severe symptoms. I was panicking. I work in the On-Demand Transportation Industry
(I drive a taxicab). The holiday season is our most lucrative time of the year. I was looking at the real possibility that I would not be able to work.
My doctor wanted me to do a CT scan. How could I afford this if I could not work? I was a self-paying patient at the time and the CT scan would have cost me $500 (I now have health insurance through the Affordable Care Act).
I sent the following fax on November 22nd to my primary care doctor:
After sending you the earlier fax, I did a bit of research on Myasthenia Gravis. I have come to believe your diagnosis is spot-on. The list of symptoms are very much what I have been experiencing.
[BTW doctors never tire of hearing the phrase: "your diagnosis is spot-on."]
http://www.medicalnewstoday.com/articles/179968.php
These include:
1. The double vision I was experience earlier, particularly when fatigued.
2. Trouble chewing.
3. Symptoms less severe after periods of rest and sleep.
4. Trouble swallowing.
5. Face mussels weak.
6. Jaw mussel weak.
7. Speech soft and nasal. In my case speech is very difficult.
8. Fatigue.
Some of these symptoms go back a long time, particularly the trouble chewing. I have also been fatigued for quite some time, but I assumed this was due to my work. Driving a taxicab 50 to 60 hours a week is very taxing. I assumed the fatigue was due to this work schedule. The only time I have taken off in the last 5 or 6 years was the 10 days in September when I was extremely sick.
The above coupled with the results from the blood test appear to point directly at MG.
What is the purpose of waiting three months to see a neurologist? Will I need to see him for treatment, or is there something you can do?
I’d like to begin treatment as soon as possible. Is it possible to begin treatment today? With the upcoming holidays and and the neurologist busy schedule, it might be some time before he can see me.
If this current episode is like the other two episodes when the symptoms passed in 7 to 10 days, waiting might not be a problem. If this current episode follows a similar trajectory, I may be symptoms free in a few days, followed by a symptom free period of two to three weeks.
But if it takes longer for this episode to pass, it will start to have a very negative impact on my life. I’m not getting enough sleep, as I am awakened every hour to clear the mucus out of my throat. I’m also unable to eat any solid food now, but I am getting proper nutrition with a product called The Ultimate Meal.
I then went to bed and awoke with a voice message that they had ordered a prescriptions for something called "Mestinon." The neurologist also found time to see me on the Monday following Thanksgiving. Prednisone soon followed.
-Mark-