Thank you, Mr. Mark

Karen, Do you have someone who can drive you that far? You might be okay on the way there, but you might crash on the way back. When MG gets bad, it's like driving drunk. Response time is reduced, not to mention strength of the arms, legs, and back. Dr. Weiss puts his patients through a very thorough clinical exam! And then there's the testing.

Dr. Weiss' colleague, Dr. Franklin, is good as well, if you can't get in to see him.

How low is your B12? Got a number? I don't find this topic very funny at all. Get yourself some methylcobalamin B12. I like the Jarrow Formula brand, 5 mg. Start taking them daily!!! Damage to the peripheral nerves can occur at lower levels.

And it is important to know the cause of a deficiency. Some people have a MTHFR mutation and cannot convert cyanocobalamin (the type in shots) into methylcobalamin so that the body can use it. For some people, it can be a lack of stomach acid. Or it could be pernicious anemia (parietal cell or intrinsic factor antibodies attacking the stomach).

There's more info on the peripheral neuropathy forum (look for Mrs D's thread).

You could be in real trouble walking that far in the hot weather. Do you have a cell phone? Don't be shy of dialing 911 if you need to!!!

Annie

May I suggest a taxicab . . .

-Mark-

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-

I don't remember the actual B12 numbers, but I'm sure I can call to get them. And yes, thankfully I do have a cell phone with me at all times. Luckily, I've never been in a situation where I've had to call 911, and I hope I never will.

Thank you again, you guys, for this information. It's more than doctors have given me, and, sadly, more attention than most doctors have given me. My symptoms have been blamed on stress and anxiety, a cold, and even dry eye, if you can believe it. That, or they say nothing about a cause, and they don't appear interested in finding one. The last neuro I saw (who just moved out of town, actually) said she didn't know, and she left it at that. It was almost as if a negative MRI meant nothing could be wrong, and that it was the only diagnostic tool available for anything. Negative MRI = no pathology. Overall, most of the doctors I've seen have just been lazy; lazy and disinterested. I've often felt like I'm a nuisance to them, whose symptoms are not severe enough to warrant their attention.

I'm seriously grateful for you taking the time to respond to me and to provide me with really helpful information that I would've have received otherwise. Thank you, thank you, thank you.

I think we have all heard that "lazy" thing. I was told I was lazy. I was told I was crazy. I was told I was just too fat and didn't exercise enough. Nobody could ever explain how any of those problems can cause my eyelid to droop.

Yep, lazy and crazy! I heard those words more than once during the 7 years it took for me to get diagnosed.

Karen, I'd suggest that you take someone with you to an appointment, if this is feasible. It's helpful to have a 2nd set of ears, as well as someone to help you drive, as Annie has suggested.

I hope that you're able to get an appointment soon. If the appointment is scheduled a ways out, make sure you can get on a "cancellation list."

Cate

Sadly, in my case, it is all too true. But that doesn't mean I don't have Myasthenia Gravis.

I thought, for a moment, you were going with a Rodney Dangerfield joke: You're lazy and crazy. Doc, I want a second opinion. OK, you're fat too!

-Mark-

Karen,

He is a great primer on Myasthenia Gravis from the Medical News Today Knowledge Center:

http://www.medicalnewstoday.com/articles/179968.php

-Mark-