The internet is a funny place. I feel like I really know all of you, but you don’t know me! I am a 35 year old mother of three. I was formally diagnosed (I think!) with myasthenia gravis in March 2011. Let me explain…

About four years ago, I knew something was wrong. Very very wrong. I would fall asleep frequently, and was always tired- really, really, tired. My hormones were all over the place. Honestly? I was afraid I was losing my mind. It was very scary. My husband finally and very literally dragged me into an endocrinologist and begged for an appointment. He came with me and essentially was my mouth piece describing symptoms and conversing with the doctor as I could not remember anything and was so confused all the time. Testing confirmed Hashimoto’s and hypothyroidism. I started on levoxyl and later switched to naturethroid (bio similar to Armor). It really took about a year to get my dosage perfect, followed by a really great year.

Sometime in the fall of 2010 my vision went completely haywire. Now I know it was double vision, but at the time I was crazy frustrated trying to figure out what was wrong. I begged my endo to increase my thyroid meds. He refused as my levels were where they should be. I remember crying to him that something was so wrong. Somewhere in the course of that conversation, something I said made him think of mg (bless him). He excused himself to refer to some literature and came back and told me he wanted to run some tests, but that it was a long shot. My tests came back with high antibodies (although at the moment I can’t remember which ones) and he referred me to a neurologist.

After an exam and a look at the blood work, the neuro confirmed mg, wrote me a script for mestinon, sent me for a ct scan (no thymoma), and referred me to Dr. Howard (April 2011) for a second opinion on thymectomy. I went to see Dr. Howard and he ordered an emg? Sfemg? Can’t remember.

Here is where you all will think I am off my rocker: my family was moving from the east coast to north Texas. I canceled the test. I didn’t fill the mestinon script.The stress of that test, moving from a community I still miss very dearly, selling our house, buying a house, switching schools for our kids etc.- I couldn’t do it.

I’m almost done- I promise! I found myself in a new area last summer (July 2011) and all of my mg symptoms were extreme. I was falling, double vision, severe ptosis, too weak to get dressed, any activity (like a shower) took at least an hour to recover from, you all know what I am referring to. I was overwhelmed with my responsibilities and my inability to accomplish them. I was scared out of my mind to take immunosuppressants or steroids. Those side effects scare the crud out of me!

After a lot of thought and prayer I decided to see a chiropractor/nutritionist. I want a cure! I will spare the details unless someone is interested, but I find myself 15 months later seeking recommendations for an endocrinologist and neurologist in the north DFW area. I am hoping someone here can refer me to a very patient (I’m scared enough to put things off ya’ll! Sitting at home all day everyday unable to contribute to my family= awful. Cancer, diabetes= scary, so scary.) neurologist. I’m very interested in taking things slow but I’d really like to feel like a person again.

Hi, Christa. I hope someone will suggest some doctors for you, but I just wanted to say: talk to us! One reason MG is so scary is that it's so rare, and it's hard to know what to expect, and most people haven't heard of it. So we tend to wrap ourselves in an isolated ball of anxiety. I don't know if everyone's like this, but for me, talking about it helps a lot with the anxiety. Not only do we have information to share, but we understand what you're going through.

I am glad you are fighting this disease by looking for new ways to treat it. That takes courage and energy. It's a good sign. You go! And don't forget to talk to us.

Abby

Thank you Abby. And sorry about the font. I don't know how to fix what I did. Hopefully it's still legible in that itty-bitty print.

No worries about the font Chista. It was a good vision test for me today. Hope you find the right path to feel better.

I would highly recommend you contact the neuromuscular clinic at UTSW in Dallas. Any of the doctors there would be good. They will start from "the beginning." http://www.utsouthwestern.edu/patien...omuscular.html

You may need a referral from a doctor to make an appt. Do you have a local MD who would provide that? Would your MD from your previous home give you a referral?

Feel free to contact me via PM if you have any other questions.

Christa, the most commonly run MG blood test is the AChR panel -- and your antibodies were positive. I don't know if your positive test was blocking, binding, or modulating -- doesn't really matter. Good news is that AChR MGers "usually" respond to Mestinon. You've probably already read in the forum that Mestinon is a "band-aid", not a real "treatment", per se. There are several of us here who only take Mestinon. It really might be enough for you. In the beginning, Mestinon restored me to about 80% of "normal". It is probably giving me more like 50%, now -- but, heck, that is a WHOLE lot better than what you are currently dealing with. And Mestinon doesn't cause cancer, diabetes, bone-thinning, or any other harsh, long-lasting side-effects that the immune-suppressant/immune modulators do. Mestinon can cause GI symptoms -- they often subside or are lessened if you take the pills with food.

The sooner you get an appointment and a prescription.........

I KNOW this is scary -- and I'm soooooo sorry!! But, you are AHEAD of the game!! You ALREADY have a postive diagnosis via bloodwork!! (So many HAVE the symptoms and are most certainly MGers, but have negative tests -- and cannot get treatment.)

Thanks for the recommendation 4-eyes. I really wanted to start somewhere that I have at least "heard" of. Obviously, I'm just so nervous about it. And I know how frustrating it is to see a dr who doesn't give you any face time.

And thank you Jana. Your comment has me teary. You're right. 50% better or 80% better is still better. I'm so tired of sitting.

Whatever you did you did! It´s now that counts!

And I hope you feel the difference between´distant´learning and actually being in the class

I found it makes a HUGE difference to:

1. Think of a problem
2. Write it down
3. Actually post it

Number 3 I found was the most powerful option leading to change for the better! And number 2 is not the same thing!

All the best for your health and your family, Christa!

Anacrusis

Anacrusis- that's awesome. Kind of a how to get the most out of this message board 101. I appreciate it.

4-eyes, I can't figure out how to PM despite searching the FAQ section. Maybe it's because I'm new to the forum. So I hope I can ask this question here? Have you worked with all of the dr's at UTSW? You like them all? Do you have any endocrinologist recommendations? Sorry, off topic I know. Cheers to starting all over again! I'm already tired.