My Journey!
 

Alright! Here's my journey so far. Lots of your stories have inspired me and encouraged me, and I just hope to be able to contribute to some who may be searching for answers, just as you guys have contributed to mine!

Warning: Its a long long post...

My symptoms first started in September last year, my fingers started trembling and I found difficulty in writing, and opening doors. Even pushing doors open started becoming difficult. I started feeling extremely tired, and attributed it to lack of sleep from working long hours. My left side started feeling numb and would wake up from sleep being unable to feel my limbs at all. My family started noticing it, and brought me to see a GP. The GP started testing my strength, and upon doing so, it was then that I realized how weak my left side had started to become. I couldn't squeeze his fingers at all, and I couldn't push or pull his hands away. My right side was still okay and he was extremely concerned at the weakness on my left side. He referred me to go to a larger clinic for diagnosis. I went to the clinic immediately, and was in turn referred to the emergency department of a hospital. I went, only to be told that as long as I could still feel another leg (my right side) its ok. I only had to go back when both legs are numb. =X And that was how I spent my 26th birthday.

Two days later, on the last day of september, after returning home from a client's meeting, I sat down by the roadside, feeling tired, and then realized that I couldn't stand up. Feeling scared, I called my friend who came to pick me up and sent me to the hospital.

Upon reaching the hospital's emergency department, I was unable to move my limbs, and couldn't even stand. I started having problems breathing and couldn't respond at all. I was trembling all over, and I couldn't stop it. That resulted in them admitting me and a hospital stay of about 2 weeks. There were various tests done, MRI of spine, brain, lumbar puncture etc. All showed normal results. But I still couldn't move my limbs without them trembling. Suddenly I found myself having to rely on people to do simple stuffs like eating (i had to have nurses feed me), turning myself in bed (i was grounded to the bed) and later on showering, changing, moving around. I couldnt chew, and would get breathless everytime I ate. It was only later on that I realized i could be having a crisis, as I had to be put on a respirator. No one suspected MG and no one knew what it was. The lumbar puncture left me worse off, as I couldn't even sit up in bed and vomitted everything I ate. Lost a total of 14lbs that week, which was about 1/6 of my weight.

I wanted badly to be home as I was sick of all the tests and nothing was being done, and my symptoms were still around. As there was nothing they could do, they referred me to a psychiatrist and sent me home.

The first few months, my emotions were like a roller coaster, and I simply just stayed at home. At the mention of what I was going through, would most often burst into tears. Was going crazy staying at home, yet couldnt get myself out (my legs are so weak that I hav to use a wheelchair). Was going crazy with all that I was bottling up inside. I even told the psychiatrist that I may be crazy since my tests are all normal, but she said she didn't think my symptoms were due to mood or mental stress. Lol. Thank God for that. Everytime after spending some time out of the house with my colleagues (who care enough to come and bring me out), my family would be complaining as I would come back looking like a dead fish and sometimes too tired to move myself at all. I would lie on the bed in an awkward position but yet not have the energy to even shift myself. They attributed this to laziness.

Its been almost 9 months since my since my symptoms started and I'm still without a diagnosis and not put on any meds. Needless to say, i myself have been the only one pushing for answers, wanting to know whats gone wrong in my body. None of my friends or family have been involved in the search for answers with me. Hence the daily visits to all sorts of site available to find out. My search eventually led me to this forum.

Its been an awesome journey so far, and I must say I've gained a lot though. It may sound cheesy but I've really learnt a lot. They always say perseverence is the key to success, but I do believe its also the key to happiness! I've found that giving to others even in my condition gives me a whole lot of happiness, and though there are things that I can't do, I find that focusing on the things that I can do helps tremendously. If there's something that I can't do, I stop thinking about it almost immediately, and then try and find things that I still can do.

Someone once mentioned, angels without wings. And I said, I'm walking without legs. I can now walk for short distances slowly, though most of the time I've to use the wheelchair as my short's extremely short. Haha. I keep focusing on the things that I have to do, and amazingly, I'm much happier. I still go to work on some days, in my wheelchair, and have gotten use to the weird stares that I get. If people stare at me, I'll just give them a great big smile and say Hi. :D They usually turn away in embarrassment. Am a lot happier nowadays, and people have come up to me commenting that they've never seen a happier person in a wheelchair.

Above all of these, I just wanna say a great big thank you to all of you who have contributed in this forum, it has helped me a lot, and though I'm still without an answer, I do believe that one day, I'll be walking and running again. You guys are an inspiration with all that you're going through, and I'll be keeping all of you in mind and in prayers. The world's a better place cos of you!

:grouphug:

Good for you Connie!

Although you're going through scary times, a positive attitude will carry you a very very long way :) I've found a sense of humour about the whole thing to be indispensable.

Brian

Hey Connie!
 

What an amazing story! The one common factor with ALL of us is that we were considered "crazy" b/c we were not able to do "normal" things.....So very sad.

I must say your sense of humor and upbeat attitude are amazing! I've seen a lot of people become really bitter and hateful after a while, so your story in particular touched me........

I too feel blessed and lucky to be here and am trying to turn a real negatie into a positive - as bad as I have ever felt, there is always someone somewhere feeling worse, so I keep that in mind..............


I've also learned to not take anything/anyone for granted - EVER! We have been given the rare opportunity to experience things from a different point of view and I do not take that lightly.........MY faith has also gotten me through the lowest points......I was very, very bitter for a while there and needed help getting through the dark times so I found a fabulous church and am so thankful!

I would like to do a "Day in the life of MG" for people who do not understand our disease....maybe it would help, maybe not, but if it helped ONE person understand then it would be worth it!

Hang in there!
Erin:D

Connie, I could feel myself in your story, what a strong person you are. Even though we are limited in what we can do, we can all find a feeling of accomplishment, in new areas. What a positive person you are, & a joy to know !
Mary

Your story is very similar to my story, I really feel for what you are going through. I went 15 months without a diagnosis but I can actually tell you that it can get better. I would do a little searching and try to find a good neuro in your area and have your dr. refer you. I was going nowhere with my first neuro because he wanted to wait and see if the symptoms went away. My second neuro was very interested in my case and finding a diagnosis. This site is an excellent support system ... so glad that you found it.
Take care ~ Melanie

Thanks Brian, Erin, Mary and Melanie!
 

Thank you for the encouragement guys!

Yes Brian, I do agree that humor is indispensable!! In fact it makes our lives much better off! Found a lot of it in the posts that all of you leave behind too. And thanks so much for all the wisdom especially the links that you post!

Thanks Erin! Your love for everyone around here touches me too. Am so glad whenever I feel aches in my body, as the aches definitely beat not feeling anything at all. Met someone who has been paralyzed from the neck down since he was 18 (he's close to 50 now), and I just feel so blessed that I'm still able to feel. Am so glad you found a fabulous church! My movement's limited so haven't been able to get to church for a while.. But there's lots of videos online to watch!! :circlelove: Whenever u need someone to talk to, feel free to drop me a mail! "A day in the life of a MG.." That sounds interesting.. It'll be fun to see what we all do in a day!

Thanks Mary, you're a great joy to know too! You are a very strong person as well, and your story inspires me. Let's all run together, and beat MG hands down! :trampoline:

Thanks Melanie, managed to locate some good neurologists, and am following up with them. One of them recommended someone overseas so may be flying over too. Anything to get my symptoms sorted out! :o

Connie, did they actually give you a DX of Myasthenia Gravis? Seems you are a fighter with a true spirit. Make sure you push those Dr.s and don't let them get away with "it's in your head" have you at least had a tensilon shot test? You sound like you need medication and or plasa exchange right away. I am glad you found this sight and hope you make many friends. This is a great place to share happy and sad days. Welcome! :grouphug:

Hi Joanmarie!
 

Nope, they've not given me a DX of MG. Thanks so much for your encouragement Joanmarie! Guess this MG brings out the fighter in all of us.. :D

I've not had a tensilon shot test, my MG fluctuates a lot in one day as well, so I'm considering working myself out so that when I see my neuro, my condition's at its worse so that he can do his best to find out. I've only done an emg and am waiting results on my antibodies test. None others related to MG. But am also in the midst of finding a good neuro to go to as my current one is not keen to work on a diagnosis cos he feels it won't help me. I just finished a one hour conversation with my friend and now my mouth feels so tired. Lol. Do any of you get tired from talking??? I never used to feel tired in the mouth from talking.

Wow Connie, what a lot you have been through, and to be able to remain positive is great

Kate

Hey Connie,

I sure hope you get some answers soon, you certainly have been through so much. I too went a very long time without being diagnosed because of one incompetent doctor. Once I was referred to an excellent caring specialist, I was diagnosed and treatment followed. I pray this will happen for you as well. You have a wonderful attitude and sense of humor. I am sure you have touched more lives than you will ever know. Hang in there, we are all pulling for you.

Take care,
Pat