About 3 years ago, I began experiencing severe pain in my legs. Lots of tests done. Negative. Over the last several years, I fell and one time dislocated my arm. No reason, lost balance and 3 times did not know I was falling until I hit the ground. Very exhausted and fatigued all the time. I am someone who never stops. Keep pushing and pushing. Not a "no" person when asked. Due to an unusual EKG last year, saw the cardiologist, lung doctor due to shortness of breath. No real problem. Ended up at a neuro's office due to other specialist telling me I needed to go back to work and learn to live with pains that come with my age (57). Was recommended by other specialist just to calm my thoughts of being afraid of ALS. Long story short. I was diagnosed with MG 2 months ago. Taking generic Mestinon 30 mg 2 times a day. I rest alot. Mestinon started relieving my legs soon after taking for the first time in years. The doctor was more concerned with weakness, but it felt so good to be relieved. People and family do not really understand. They look at the outside and as usual think I am making most of this up that they are just as tired. I feel so alone at times. I am beginning to get a little depressed because I can't explain it and now I am wondering if I am sick. My blood work x2 and EMG came back as MG. My weakness is I give out if I lift my arms up for a few minutes. I lost my voice last October 2009 (hoarse) and have not gotten it back. ENT said allergies and I needed speech. Neuro said not. I trust him. He is so good. I used to walk but the pain won't let me now when I start using my legs. At rest, they feel better. I have been reading this forum for a while now and it is a wonderful thing. This is my first post. Is MG different for everyone. Sorry for being long winded. Easier to type than talk. busybusy

Hi, and welcome! This is a good place to be, because the disease is so misunderstood. Sometimes I tell people who ask, "I have a neuromuscular disease that's sort of like MS." I know MG is very different from MS, but MS is the closest disease I can think of that everyone's heard of. I sort of want people to know that this isn't in the category of "a little under the weather"; it's a serious disease.

I understand about losing your balance and falling without realizing what's happening. For me, that happens because my side muscles are weak, and don't automatically "grab" like they should. So sometimes when I start moving to the side, I just keep going, and then I lose my balance.

Your dose of pyridostigmine (generic Mestinon) is unusually small. Pyridostigmine has a four-hour half life, which is very short. If you're only taking it twice a day, you must be running out in between doses. Also, most of us take at least 60mg. at a time.

So, maybe your doctor has a reason for giving you such a small dose, or maybe you tried a larger dose and it didn't work for you? If not, you might think about asking your doctor if you can at least take it more frequently. it might help your voice and the exhaustion.

Again, welcome, and feel free to post here. This is one place where people understand!

Abby

Thank you for your encouraging words. I was on a low dose for 2 weeks. He upped my dose to 60 mg twice a day. It was so harsh on my stomach, he had to reduce it back for a little while longer. I have a question. I have been fighting this unknown for about 3 years. That is when I first started noticing things. Do you ever bounce back right away or does it take a while to get back to where you were. busybusy

Busy,

Welcome to the forum! The folkshere are very caring, kind, and informative.

You will soon discover that no two stories are the same, MG effects everyone a little differently, everyone responds to treatments a bit differently as well (hence the nickname Snowflake disease). Some take smaller doses of Mestinon than others. Others may take it closer together. Together you and your neurologist will figure out what doses work best for your situation. You will find even your doctors may not always agree with each others diagnosis. All this can make it difficult to know what direction to take your treatment.

Remember you are not alone in this, even if some family and friends don't understand there are plenty of people on the forum who do.

Rachel

Busy, I can relate to so much of what you said. In particular the pain issue. I think that's what threw my doctors off when they were looking for a diagnosis. So many people think that people with MG don't have pain, but I've heard differently. My GP said pain is a part of it. I've been sick for five years and been to nearly a dozen doctors. I have the typical MG symptoms...weakness (esp with repetitive motion), ptosis, breathing difficulties, trouble chewing and swallowing. I have been diagnosed based on my clinical symptoms and on my response to Mestinon as my blood work was negative.

Keep reading and posting here because everyone really does get what you are going through. Try to pace yourself throughout the day. Use any mobility devices you may have. I have a cane, walker and a wheelchair! My arms are too weak to roll the chair so someone has to do it for me. Thankfully, I don't need to use these things too often.


Shalynn

Hi Busy...Welcome!

I'm one of the ones who takes less Mestinon more often - and vary it depending upon activity level, weather, etc. I am fairly active and have mild symptoms compared to the majority of folks in this forum.

I too was a very busy, busy person and am same age as you. Have been diagnosed for 1.5 years. I'm slowly begining to acknowledge (grudgingly) that I will never get my strength or activity level back to where it was. And while Mestinon helps a great deal, it can't put things back to the way they were. But I am way better off with it than without!

Have you ever wondered if you really do have these symptoms or if they are imaginary. I have had breathing problems in the past that I noticed. Sometimes when I lie down, I feel like I can't breathe well. I noticed the last few times at the dentist office when they laid me back in the chair, it felt like my tongue was covering my windpipe and I thought I was going to hyperventilate before they finished. I was terrified. I can go and go during the day but the next day I feel like a mac truck has run over me. Is this how everyone feels. I think I handled this better when I didn't know. I knew when I got tired to rest. Now, it is like a shadow everywhere I go watching me. Sounds crazy doesn't it. Maybe I am thinking about it too much and letting it take over my thoughts and actions. I would like to thank everyone who has helped me in this forum. Your responses are greatly appreciated. busybusy

I know what you mean.

My adjustment has been that I can do only one 'activity' per day -- and depending on the one I pick, it can mean the next day I can not do much of anything. (And I do not work outside the home like you do.)

Example: Saturday - - long walk, beautiful day (but about 1/3 the distance I used to do)
Sunday - - 9 holes of golf (used to play at least 18)
Monday - - scrubbed kitchen floor (in stages! took me all day)
Tuesday - - no wind for my sails...flopped about all day waiting for energy
Wednesday - grocery shopping was the effort du jour

There was a time when all of the above could be knocked out in one, long busy day. Yes, some of it is age - - tho most of it is MG. And yet, I am greatful I can do what I can do. But sometimes fear .... well let's not go there.

That is how I have been trying to do since before I found out about MG. I used to clean all day on Saturday, do grocery shopping, help mow yards, and keep going until. Now, if I clean the house, that pretty much sums everything up. I can overdo, but I pay for it the next day or so. Thanks for your reply. busybusy