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Old 05-13-2009, 10:27 AM #1
rezmommy rezmommy is offline
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Default Feeling Great!

I just wanted to let everyone know that I have been to the lowest of lows with Myathenia Gravis. I have cried because I could not lift my children. I have been embarassed because people would stare at my droopy eyelids. In January I could not swallow and was having a lot of difficulty breathing. My first crisis experience and it scared the hell out of me.

Here is a brief outline of what has brought me to where I am today.
~ Aug. 07 - symptoms first appeared with limb weakness
~ Jan. 08 - right eyelid starts drooping
~ May 08 - left eyelid starts drooping
~ July 08 - neck weakness & shortness of breath
~ Oct. 08 - difficulty swallowing, extreme overall weakness, fatigue
~ Nov. 08 - diagnosed with generalized MG on the basis of single fiber EMG,
response to Mestinon and neurological exam
~ Nov. 08 - started on Mestinon 60 mg 5x/day and Azathioprine 100 mg
~ Dec. 08 - eyelids and walking improved but the swallowing and breathing
were still problematic
~ Jan. 09 - crisis, had four days IVIG and improved greatly and started on
Prednisone
~ Feb. 09 - thymectomy (full sternotomy)
~ Mar. 09 - still on all meds including Prednisone 20 mg
~ May 09 - Prednisone is now down to 10 mg and Azathioprine is still at 100
mg. I have not taken Mestinon for a week now.

I don't know how long this good feeling is going to last but I definitely intend to ENJOY it! My weakness is not completely gone but I feel stronger than I have felt in a long time. My weakness remains the same throughout the day even though I am starting to live my life more actively. I don't know if it is the surgery, the meds or what but I am defintiely thankful.

I just wanted to let you know that it CAN get better. You are all wonderful people with hearts of gold!!!!

Last edited by rezmommy; 05-13-2009 at 12:03 PM.
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Old 05-13-2009, 11:12 AM #2
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WOOHOO! That is wonderful! I hope your "great feeling" continues!!!


I just love these icons!



Quote:
Originally Posted by rezmommy View Post
I just wanted to let everyone know that I have been to the lowest of lows with Myathenia Gravis. I have cried because I could not lift my children. I have been embarassed because people would stare at my droopy eyelids. In January I could not swallow and was having a lot of difficulty breathing. My first crisis experience and it scared the hell out of me.

Here is a brief outline of what has brought me to where I am today.
~ Aug. 07 - symptoms first appeared with limb weakness
~ Jan. 08 - right eyelid starts drooping
~ May 08 - left eyelid starts drooping
~ July 08 - neck weakness & shortness of breath
~ Oct. 08 - difficulty swallowing, extreme overall weakness, fatigue
~ Nov. 08 - diagnosed with generalized MG on the basis of single fiber EMG,
response to Mestinon and neurological exam
~ Nov. 08 - started on Mestinon 60 mg 5x/day and Azathioprine 100 mg
~ Dec. 08 - eyelids and walking improved but the swallowing and breathing
were still problematic
~ Jan. 08 - crisis, had four days IVIG and improved greatly and started on
Prednisone
~ Feb. 08 - thymectomy (full sternotomy)
~ Mar. 08 - still on all meds including Prednisone 20 mg
~ May 08 - Prednisone is now down to 10 mg and Azathioprine is still at 100
mg. I have not taken Mestinon for a week now.

I don't know how long this good feeling is going to last but I definitely intend to ENJOY it! My weakness is not completely gone but I feel stronger than I have felt in a long time. My weakness remains the same throughout the day even though I am starting to live my life more actively. I don't know if it is the surgery, the meds or what but I am defintiely thankful.

I just wanted to let you know that it CAN get better. You are all wonderful people with hearts of gold!!!!
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Old 05-13-2009, 12:31 PM #3
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Rez, that is awsome news ! What a fighter you are, you get the gold belt ! Enjoy, Enjoy !
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Old 05-13-2009, 04:26 PM #4
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That's great! It's good to hear when people are on the "glass is half full" side of this disease. It's often hard to do and some of us don't get there. So it's nice to know that you are in a good place and feeling better.

Annie
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Old 05-13-2009, 08:22 PM #5
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Thumbs up HEy there!

That is awesome! You give the rest of us HOPE! As long as we are living and breathing there is ALWAYS hope!

This is gonna be a great year!

I am sooooooooooooo happy for you!

Erin


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Old 05-13-2009, 10:35 PM #6
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Great news that you are feeling better!!
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Old 05-13-2009, 10:42 PM #7
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Rez - That's so awesome and I'm so happy for you. It sounds like you are following the routine with the MG that I did, and I was at full remission - no meds at all - within 3 years! It is wonderful.

And I'm a real sucker for these happy endings (I know it's not over yet, but to see the chronology you've come such a long way!)

Congrats - even better times are yet to come!
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Old 05-14-2009, 12:05 AM #8
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Congrats Rez! We'll all get better!
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Old 05-14-2009, 06:03 AM #9
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Default That is wonderful

So happy for you., you have been thru so much, glad you are feeling better,go girl!!!!!!!!!!
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Old 05-14-2009, 07:39 PM #10
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Great update Rez. Thanks for updating.
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