NeuroTalk Support Groups

Quote:

Originally Posted by Panorama (Post 1047833)

You have to push them sometimes. The state of my diagnosis in mid November was a positive blood test. My primary care doctor refereed me to a neurologist in the group. The earliest appointment I could get was February 3rd. I still have this appointment, but it will be the second. They found time to see me earlier.

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, yet my treatment was not likely to start until the first week of February when I would be seeing a neurologist for the first time. What was my doctor thinking?

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 thought at the time this was due to my dental problems, but now I realize it was something else. [I did not tell my primary care doctor about my weak jaw and trouble chewing for over a year because I thought the cause was bad teeth. Had I told him, he would have diagnosed MG much earlier.]

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 Dr. Ngo? [my neurologist who I was scheduled to see in February for the first time] 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 Dr. Ngo 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." My neurologist also found time to see me on the Monday following Thanksgiving, our first meeting. The result is that I am keeping, what would have been my first appointment with a neurologist on Monday. With only one visit to a neurologist, I am well into treatment--three weeks on Prednisone. If I had not found the courage to become more proactive, where would I be today?

You do not work for your doctors. They work for you. I know they can be intimidating, but they are not the boss of you.

-Mark-

P.S.: What a wonderful world we live in. I send a fax to my doctor and awake with drugs waiting for me down the street. I think I will send my doctors a fax telling them that I have a headache. I want to see if there is a Vicodin prescriptions waiting for me at CVS when I get up to go to work tonight. :)

Wow, Mark! What a wonderful result from being proactive! Wish I could say as much for ANY doctor or doctors I've seen over the years. I'm currently waiting for a followup appointment with the neurologist I saw on January 2nd. He made it abundantly clear that he wouldn't discuss anything during that visit except the aneurism they found on my MRI. He DID recommend that I schedule an appointment with a neurologist for the problems I've been having with falling. Here in Massachusetts (with universal health care) there's a three week wait for emergencies. Apparently there is a three month wait for a non-emergency. Guess that means that if I take a header down the living room stairs I'll only have to wait three week to see a neurologist. Gad!