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Unread 05-04-2012, 09:23 AM   #1
Royce
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Join Date: Mar 2012
Location: Florida
Posts: 8
Angry frustrated

Hi,
I have been reading discussions on this site and am glad to know that i am not alone in the frustration of not knowing what is wrong. I started feeling different about 2 1/2 years ago. After various doctors, tests and a feeling of being a Hypochondriac, I finally made an appointment with a Neuro. They did an EMG and single fiber study and both came back abnormal. FINALLY, someone knows something is wrong, what a relief! Still waiting for the results from my AChr and MUSK. They are thinking MG but I am also having (been since Oct 2011) muscle cramps and twitching everyday different areas of my body. Mestinon does not seem to do much for me, no matter what the dose. I cannot find anything that says MG causes twitching and/or cramping but I have seen that ALS does. It seems also that my muscle fatigue is continuing to get worse. When I called the Neuro to get in sooner than 1 month the answer I got was, if its bad, go to the ER. What is the ER going to do for me?? Refer me back to Neuro. All I want is a sure DX and start treatment. I am still working full time and it is getting harder for me to perform my job duties with out becoming very short of breath and fatigued.
Dont they realize we need results so we can start planning our future ?
sorry i am venting on here but it is difficult to talk to family and friends because they do not understand. I have caught a URI this week and noticed that my shortness of breath is worse than normal. Having a hard time getting air out after just normal activity. As long as I sit still and rest im ok, but have to work today and tomorrow.
thanks for listening to me vent. Have a great day yall'
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Unread 05-04-2012, 04:21 PM   #2
Rrae
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Smile Hi Royce....

Welcome!

I feel your frustration. You have every right to feel this way, So, vent all you want! I'm so sorry you are going through this.
You've come to the perfect place for support and understanding. I see you've already found your way to the MG forum. Lotsa wonderful people there. You're sure to get good feedback.

It's nice to have you with us Royce, tho I'm sorry it has to be under these circumstances.....

Friends are on the way...

Caring,
Rae
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Royce (05-06-2012)
Unread 05-05-2012, 01:11 AM   #3
Darlene
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Royce,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Here are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene
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Royce (05-06-2012)
Unread 05-06-2012, 08:07 PM   #4
Royce
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Join Date: Mar 2012
Location: Florida
Posts: 8
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Thanks so much! Its nice to find a place that is so friendly. I will be visiting frequently.













Quote:
Originally Posted by Rrae View Post
Welcome!

I feel your frustration. You have every right to feel this way, So, vent all you want! I'm so sorry you are going through this.
You've come to the perfect place for support and understanding. I see you've already found your way to the MG forum. Lotsa wonderful people there. You're sure to get good feedback.

It's nice to have you with us Royce, tho I'm sorry it has to be under these circumstances.....

Friends are on the way...

Caring,
Rae
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Rrae (05-07-2012)
Unread 05-06-2012, 08:08 PM   #5
Royce
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Join Date: Mar 2012
Location: Florida
Posts: 8
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Its nice to know there are people out there will to help and listen. Thank you so very much!
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Rrae (05-07-2012)
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