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-   -   Question for the group (https://www.neurotalk.org/myasthenia-gravis/67308-question.html)

erinhermes 12-27-2008 01:02 PM

Awesome!
 
I hope this means that next year you will feel great!!!!!!!

Take care!!!!!
Erin:D
Quote:

Originally Posted by MissyGirl (Post 434351)
I am doing well right now. I had 6 weeks almost symptom free and then a one week "mild-moderate" flare up and now back to mostly good. I just infused 50 grams of IVIG this afternoon in hopes of making it through the next few weeks on a high note.

Christmas was peaceful. Visits with several friends and my mom. Everyone liked their presents and there were no "conflicts" of any kind.

Hope everyone else is heading toward the new year in a good state--physically and mentally!:D

Missy


cricket001 12-27-2008 01:14 PM

Quote:

Originally Posted by littlekitten (Post 434275)
Cricket...

Do you find that the Mestinon does anything at all for you to help with your symptoms?

Lydia

No, not really...the double vision did stop..the blurry vision is still there...I have really been in denial....even going to the eye doctor to make sure that it is not my eye..he also confirmed the MG diagnosis...saying that it was my eye muscles....I guess I have been in denial because all the "MG" tests have been negative....I was so scared that it was MS.

I stopped taking the mestinon for about 3 weeks....hoping that all of this was stress and would just go away...but I have gotten worse since I stopped.. my balance is so bad and I have been avoiding social situations if I have to "talk"...I get nervous and my neck flushes so bad when I have to talk in a group or one-on-one with my boss....I talk, but I can't puncuate some words anymore..and it comes out mumbled sometimes... Why is this??


I have been back on the meds for a mestiton for about a week now..and while I have more energy...my eye and speech are really concerning me...Talking in my job is very important...I am worried! I am calling my neurologist on Monday...and explain my situation...I am really scared!

cricket001 12-27-2008 01:21 PM

Help with speech??
 
Does physical therapy help with speech?? I feel like I my lips and jaw are heavy...and I can't get the words out...I can puncuate anymore...words like specific...etc...I stumble when I talk alot.....My husband asks me to repeat what I say alot....I feel like people are staring at me..and wondering....I did tell my boss..but I haven't really shared all for fear that I might lose my job for someone who can communicate effectively...

My family doctor also put me on celexa (mild antidepressant)...and this has helped a little bit...to aid me in relaxing in social situations....

Has anyone had this problem??

erinhermes 12-27-2008 01:38 PM

Hey Cricket!
 
Yep, it's smart to see your neuro and tell him whats going on.....I was the same way with my meds in the beginning.......it is really hard, but just take them and hope your neuro can give you something that will really help!!!!!

My speech was so bad that no one understood me (due to my weak nasal muscles) - I sounded drunk or stoned and I would weave when I walked - in fact, my son called me his "wobbly" mom...........

Hang in there girl! It will get better soon! Once you are on your meds, you'll feel 100% better!!!!!!

:hug:Erin:hug:

Quote:

Originally Posted by cricket001 (Post 434573)
No, not really...the double vision did stop..the blurry vision is still there...I have really been in denial....even going to the eye doctor to make sure that it is not my eye..he also confirmed the MG diagnosis...saying that it was my eye muscles....I guess I have been in denial because all the "MG" tests have been negative....I was so scared that it was MS.

I stopped taking the mestinon for about 3 weeks....hoping that all of this was stress and would just go away...but I have gotten worse since I stopped.. my balance is so bad and I have been avoiding social situations if I have to "talk"...I get nervous and my neck flushes so bad when I have to talk in a group or one-on-one with my boss....I talk, but I can't puncuate some words anymore..and it comes out mumbled sometimes... Why is this??


I have been back on the meds for a mestiton for about a week now..and while I have more energy...my eye and speech are really concerning me...Talking in my job is very important...I am worried! I am calling my neurologist on Monday...and explain my situation...I am really scared!


erinhermes 12-27-2008 01:42 PM

My speech problems didn't go away til I was on the roids
 
:hug:Hello again! My speech problems did not go away til I was on my roids. They made all the difference in the world!

I know it is embarrassing, but you have a disease - granted, our disease is one that does have life long remission, but it is still a disease............

Hang in there!

I don;t think speech therapy will work, but hopefully someone who knows a little more will be able to help you with that one..........

:hug:Erin:hug:

littlekitten 12-27-2008 03:52 PM

Cricket...

I too started my original symptoms much the same way. My voice & my vision WERE my livelihood. I don't believe you need speech therapy. You don't have any impediment, EXCEPT for the fact that your muscles are too weak and don't have the strength required to 'make' the words happen. (You may find that your tongue feels like a dead-weight in your mouth as well).

Mestinon alone helped me originally, however after my thymectomy, symptoms become worse, and adding steriods did help. Nobody enjoys going on them, but they are for our benefit. The fact that the Mestinon is helping some of the symptoms is a good indicator. My suggestion would be to discuss with your neurologist to start you on prednisone so that you can feel the benefit, and then adjust dosage as needed. There is only one way to find out if it will work, and that is to try.

Best of luck....oh and remember... Life is great - even with additional weight! hahahahaha

Lydia

cricket001 12-28-2008 09:35 PM

Thanks! I am trying to hang in there:winky:
I am going to back to my neurologist tomorrow. Hopefully, he will understand my denial..and help me get back on track!

Cricket


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