[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.

[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

[maryec]

Susan
Nice to meet you!
What a strong person you are, to have gone through all that ! Adjusting our lives is one of the things we all have in common, with this disease, thats for sure !

Take Care,
Mary

[rach73]

Thank you for sharing your story with us.

This is a brilliant site for learning about MG and sharing things about MG.

Im not up to doing too much typing right now!

Love
Rach

[JCPA]

Wow desertflower what a journey you have endured! You have such an incredible story. I am recently diagnosed as well....to be honest...just about the same time frame as you. Your mood says "inspired". That's good. I stumbled on this site myself in the last few weeks. I have spent alot of time on this site before I joined. This site has inspired me greatly to hear how others are doing with this disease... One think that I have learned from this group of people is that here is HOPE. Try to stay focused on the future....it is bright. Surround yourself with positive people and stay away from negative people. Have a good Neurologist who understands your situation and can help you manage your symptoms. Stay around and we can support each other here! This site is great!

God Bless

[AnnieB3]

Susan, Welcome. This is a great group of people here who can really give you tons of support.

MG can be brought on by all sorts of things that upset the immune system. Having someone put a hit out on you and viciously attack you would definitely qualify as upsetting. Good grief. I'm glad he's in prison.

If you really live where you say, then maybe you shouldn't put it on the forum. They have computers in prison. Just in case you don't want anyone knowing where you are!

I think that you are amazing for having survived such a horrid experience. You should really lean on that and realize that if a big BLEEP (can't call him what I want to) can't bring you down, then a little disease like MG can't bring you down either.

I hope you have a good neuro. There are other treatments for MG. Resting between activities helps a lot. And stay the heck out of the sun and heat! It makes MG exponentially worse.

I know what it feels like to want to give up. But you never know what good tomorrow will bring. You have to surround yourself with all that's good, with all that you love. Like music, hobbies, etc. Pamper yourself. Stay in touch with people who don't want to hurt you!!! And I would highly recommend, since I have PTSD bad too, that you find a psychologist or psychiatrist that understands it and can give you coping skills. Even a self-defense class would help - which I know from experience.

I think when a disease hits you, that's when faith comes in to play. I often take a deep breath and just say "Okay, I have MG, now what am I going to do next?" It's a stupid Norwegian thing where we never give up or in and just keep going. Heck, it's probably an everyone thing but I come from a farming background where my ancestors had it really rough but kept on moving forward anyway.

Just hang in there. I had this stupid disease my entire life and only found out about it at age 41, 9-1/2 years ago. I'm alive and relatively fine. So can you be!

Annie

[DesertFlower]

Originally Posted by 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

Thank you for your experience with being active. Everytime I consider an activity now I worry that I may make my MG symptoms get bad again. I am missing being outdoors so much. I don't know where my limits are. Plus I love the warmth outdoors, I really love the heat of 90 to 110 degrees it feels great - can I still enjoy it? I will find out as time goes on.

Thank you and thank everyone for thoughts and experiences.

[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.