[DesertFlower]

I am happy to join everyone here. I have been reading posts and thougth now would be a good time to introduce myself...

I live in beautiful Tucson, AZ. Currently 37, married and have two kids (from previous marriage). I like to spend time outdoors-hiking, gardening, observing nature. I like to learn just about anything. I read as much as possible and I love music and writing. I am in general an active happy person, until recently...

Here is how my MG started:
In May 2009 I was sick with flu-like symptoms(including high fever) that went away after one day. One week passed and then I started to get double vision that kept getting worse. One more week went by and I started getting tired all the time and started having trouble chewing food and using my facial muscles (I couldn't smile anymore). I started to feel tingly in my face and arms occasionally and after a few more weeks the tingly sensation went away to be replaced by a heavy feeling in my arms and legs. At this time I had my blood tested and an MRI done. By the time my blood results came back with a positive diagnoses for MG in July 2009, I could hardly pick my feet up off the floor to walk and had lost 5 pounds because I was having trouble eating (I weight 120 lbs and did not need to lose weight). I couldn't pick my arms up above shoulder height and most of my fingers would not work at all. The worst thing was not being able to see properly and especially not being able to look people in the eye when I talked to them! I sometimes had slight slurred speech and then my eyelids started to droop and even close so I couldn't see at all. My eyes felt dry because my eyelids would not close completely. I spent most of my days in bed during June and July. During the last week of July, some of these symptoms started to fade so that I could function somewhat, but they did not go away.

I started taking Mestinon(60 mg twice a day) in August 2009 and after a few days I stopped feeling tired all the time. Slowly my strength returned, my eyelids would stay open and the worst of the double vision faded.

After one week of taking Mestinon I felt so much better, not normal, but functional. Then I started to get signs of an overdosage of Mestinon-my muscles were tight and would not relax, then I started to hurt in all my muscles. My husband said I looked like frankenstein since my whole body was stiff. My doctor reduced the Mestinon to 60 mg once per day then later added a second dose every other day. This dosage has made my life tolerable.

Other information that sort of relates to MG:
I have PTS (Post Traumatic Stress) which I think was partly the cause for me getting MG. I am going to explain why, since it feels good to talk about this and I am still healing from the experience. In 2004, my ex-husband (from 1997) decided to make good on his previous threat when we got divorced and hired a hit man to kill me. To make the story short, a man attacked me with a knife and I struggled and was able to take the knife away from him. He then held me to the ground and tried to strangle me and break my kneck, I fought to get away. This struggle lasted about 30 minutes. He was a large man, over 200 pounds and out of shape(lucky for me). I finally had a chance to get my hand out from under me with the knife and he backed off and left...I was left with many injuries but at least I am alive.
I have had constant stress since this time in 2004. The police detectives told me that others were involved in this wish for me to be dead and recommended that I leave the state. I had to move and quit a job that I loved. My ex-husband is in prison now but I live with a constant fear that the other people involved (his family) may try to kill me someday.
Since this attack, I have had constant bad things happen to me and getting MG is another addition to my list (the worst one). My ability to take all these bad things is ending and I feel a big shadow of despair over me just about to smother me. Today I feel like just giving up.

I know that my MG symptoms are not severe right now and that others feel much worse. I guess that I am currently feeling the big loss, so many goals I have to give up, so many things I can no longer do. It is like starting my life over again.

I hope everyone the best.

Sincerely,
Susan

[Scots Kat]

Hi Susan, and welcome to the group!
What a story... I don't really know what to say! I will though make sure that you know you can still be an active, happy person with MG. Thankfully MG is not a death sentence and although your life may be different now you will still be able to achieve lots of your goals and lead a "normal" life. You might be starting over but it's really not always bad!

I have moderate MG but am able to work full time and stay pretty active as well. I'm no longer able to go rock-climbing, but I still try to get outside and do other active things. I should do more, but some days just fulfilling my work committments is enough. Learning to live within your limits is a huge MG lesson!

Take care of yourself and your kiddies and keep posting! It's great to hear everyone's perspectives on things.
~Kathy

[Joanmarie63]

Susan

Welcome to the BEST internet site for MGers like us. Your story made me cry, actually I cried for the strength you showed. Stress is a major factor of MG, and we all understand the "giving up" feeling. I was in complete remission for 17 years and am just now readjusting to having MG again so I know how hard it is. In fact today I went out to lunch with some of the girls I used to work with and had to come straight home and sit for an hour just to get my strength back to come onto the computer.

Has your Dr. talked to you about a thymectomy? You don't have to have a thymoma to have it done as my thymus was "Hyper Plasia" meaning my thymus was spread out/wrapped around my organs. My surgery put me in remission for a long time.

You will be able to do things again, I know right now it looks hopeless but it is NOT. You will be doing things again just not as intense as before. Once you can manage your mental health the rest will be easier. I was glad to see you were DXed quickly {took them years to figure me out LOL}

Please keep posting and know that you have people here who understand 100% and we will listen.

[DesertFlower]

Thank your for your thoughts.

My thymus is normal so my doctor said that just taking Mestinon should be all I need. I will hope for a future remission and if not then at least to learn to accept MG and try to make the best of it. For now I am sad, angry and afraid and haven't been able to get past these emotions yet.

[motorhead]

hi d.f.
my symptoms also presented after having the flu. had ptosis for 2 years off and on, treated/misdiagnosed as other things. after the flu i had difficulty chewing, swallowing, lifting above the shoulder and holding my head up. apparently stressors like illness can unmask symptoms. talking to others here, this is a fairly common thing.
if you're having trouble with the dosage on your mestinon, talk to your neuro about half pills. they do make a 30 mg. but no one seems to stock it. my neuro originally wanted me to start on 30 mg. but i just got 60 mg. and a pill cutter. turns out i need much more, 90mg. every 4 hours, religiously. this dose keeps me almost symptom free.

[Tbarney]

Welcome Susan.

So many people have mentioned discovering MG after the flu. As I look back, a couple of years ago I did get the flu a lot, wonder if that is when it started?

[DesertFlower]

Thanks Motorhead for sharing your similar experience.

I think the pill cutter is a great idea. I am still adjusting my dose. I need somewhere between 1-2 pills daily and am getting the right amount figured out with help from my doctor.

I am glad you are mostly symptom free. I no longer have the worst symptoms, but still get tired at the end of the day and have minor symptoms. But I am not complaining. The first month of MG was scary without the Mestinon-I don't want to experience that again-I hope those days never return.

[ConnieS]

Hi Susan, welcome to this great family! =) Thank you so much for sharing your story, what an ordeal! It must be really scary to have gone through all of that, am so glad you pulled through. Like what Annie says, if you have gone through all that, I do believe MG will not get you down. There are many here who are true fighters like yourself, and we're all here for one another! So feel free to ramble on whenever you need to, or ask anything here.

Ps. I also think perhaps you should keep your location a secret, just in case....

[erinhermes]

Wow! You have already been through so much - so young! I am so sorry to hear you have been through such a nightmare........

My ex was abusive as well, but never tried to kill me. I finally managed to get away from him once I met my hubby. He has been such a blessing to me.

I wonder how many of us with MG have traumatic experiences in our lives that we don't really want to acknowledge?

Our symptoms and time frames sound eerily familiar. I too had flu like symptoms and one week to the day after getting over it I had difficulty seeing - the beginning of the end......

MG is HARD and LONELY, but this site has been a true God send to me! Everyone here is so kind and supportive. You will find a wealth of knowledge from our members......trust me - you are going to LOVE it here!

Are you on any meds for anxiety? Paxil has worked wonders for me! I know the first time I had a plasma exchange I went a little bonkers and my dr prescribed it - AMAZING stuff!

Hang in there. You've PROVEN to be a fighter - why else would you fight off that horrible man? MG can b controlled! You are going to need a GREAT neuro and a support group, but once you are on the RIGHT combo of meds, you'll feel like a new woman!

Can't wait to hear from you!
Erin

[DesertFlower]

Erin,
Thank you being so positive! Thinking positive is probably the best thing. How do you do it when things get so bad? I don't want to think about the bad things now, but I do have so many things to figure out. It feels good to have people to relate to. I think I have the right medication figured out at least for now-I feel ok and can see most of the time(although definitely my vision is not perfect).

No anxiety medication for me right now. I think what I need now is a support group-this place is great.

My curiousity wonders what causes MG, no one seems to know. The answer is probably at least somewhat in the common experiences.

I hope you are feeling better.