Results are in....MG it is
 

Just wanted to close the loop and let you all know that the EMG and antibody tests came back positive and were enough for a diagnosis. My Neuro prescribed 60mg of Mestinon three times a day and I just took my first dose.

I'm not sure how I feel about the diagnosis and the medication. On one hand I have a diagnosis and on the other is the fear of what the diagnosis will bring. I'm a pretty healthy 40-year-old working mom with a family. For 2.5 weeks I've had blurred vision and a droopy left eyelid. I do have moments of fatigue during the day but they are manageable. It concerned me and I went to see my optometrist, doctor, and neurologist. These appointments have happened quickly and for that I am grateful but I still struggle with what is next.

I am in the process of scheduling a follow-up with a neurologist who specializes in MG - he was actually the one that did my EMG. How often do you see your neurologists? What should I be looking for as I take the medicine?

Thank you for your help!

I'm sorry you got the diagnosis. It's a tough one, that requires some "educating." Please give yourself permission to take the time to process and adjust and know that it really can take some time to do that.

Everyone is different, especially where medical care is concerned. You may find you see the neuro more early on and then the appts will spread out as you stabilize. If you worsen, you may have to make an unscheduled appt.

I hope the mestinon works for you. Mestinon just treats symptoms and does not address the immune system dysfunction. Some people can make it on mestinon alone, but if you still need additional support, there are immunosuppressing drugs, IVIG and plasmapharesis. No one on here does the same combo and no one has identical results either.

Good luck on your journey. Keep and open mind and listen to your body about what is happening and what you feel you need to do. Please remember that support is only a few clicks away!

I'm a newbie with the disease also. I was diagnosed not quite a year ago. The most positive thing about the disease for me is that it IS manageable. Educate yourself, keep as positive an attitude as possible, and follow your doctor's orders. Good luck to you!

Crayolagal said, "I'm not sure how I feel about the diagnosis and the medication. On one hand I have a diagnosis and on the other is the fear of what the diagnosis will bring..."

I like the way you think, Gal! :) I guess a 'Welcome to the Club' is in order.

When I heard those two words..."Mya...what?" the neuro stood there and said absolutely nothing. He understood that in the moments following, I wouldn't hear a damn thing he said! I didn't know what hit me for quite some time and even then...I still haven't reached acceptance. I absolutely refuse to! :D I walked in the hospital for the Tensilon Test, and later, when I stepped outside, it was a new world.

Welcome, Uncle Dave! I like your style! :)

(Uncle Dave, that's my son...:D)

thank you! :)

Sorry you didn't get kicked out of the club. At least you now know what you have to manage.

It might help to mention that many people have to tinker with mestinon a little to get it to work right. I was originally put on 60mg every 4 hours but 60mg gave me slight muscle cramps after taking the pill and then would wear off at hour three. Now I take 30mg doses more frequently and that works better for me. I actually use a little less mestinon since I often don't bother with a dose at night.

I think most neuros are supportive of this type of tinkering since the mestinon is only there for your comfort and symptom relief and you are the best judge of when you feel best.

I hope mestinon works out well for you. For me it's been great.

I am a newbie here also, and I have struggled with it since it was diagnosed a couple of weeks ago. Being diagnosed with MG is such a double edged sword, i have fought my double vision for a year now, that i was glad to know what Im fighting instead of a ghost... but I have progressed so quickly that it scares me. I fear a crisis all the time. I am fortunate to work for a great company that is really accommodating me. They have created emergency contingency plans for me, which makes me feel much safer at work and I have the ability to work remotely if I can't make it in the office. Good look to you and I hope that they find a combo that works for you quickly, mine doesn't seem to be working so well yet. My neuro just changed my Mestinon doses on Tuesday and so far I still don't feel great, though it tremendously helps my double vision most of the day. I am supposed to go back in next week if things haven't changed and he is going to be looking into other options.

Sorry for my rant... Having a real rough time with this. I think the Florida heat is becoming my nemesis. :(
Lindsay

Lindsay, I m terribly bothered by the heat too. As soon as it goes above 70 degrees, I can feel the effect. And the hotter it gets, the worse I feel. I keep the house really cold all year. In the winter I set the temp to 58 degrees and in summer to 72. I live on PA and have already had the air conditioner running daily for several weeks. Next week it is suppose to get up to 88 degrees and I am dreading it. When it get really bad, I put zip lock baggies of ice on the effected muscles and it helps. I take luke warm showers all year. Warm showers just drain all the strength from me. Even cooking, folding laundry from the hot dryer or doing the dishes with warm water affect my MG.

I hope you find relief from the heat.
kathie

I am new too. I started with double vision and went through MRI, spinal tap, etc. the first MG test was negative. Double vision got worse, so, ophthalmologist sent me to a neuro ophthalmologist . She said there is a high rate of false negatives on MG and wanted to do it again before doing another spinal tap. I had no other symptoms and thought this was a waste of money....no way I had MG. imagine my,shock when they called to say positive. My treatment has been trial and error. I am 48 with a 3 and 6 yr old. This hasn't been fun. Three months on prednisone...side effects were worse than MG. I did not respond well to it. it is taking me 6 wks to taper off and I am switching to cellcept. I take mestinon every 3 to 4 hrs. I did a round of IVIG for a week...didn't really seem to help too much. Although, it is clearly hard to know bec it could be halting progression. I am considering having my thymus removed now. Just a few months into this, but decided from the start that it make take a year or so to figure out best treatment plan.... And, I spend lots of time working on my mental health.