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Shout what really gets you angry!!!!
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Cervicaldystonia
Good advisor
Hello,
what really gets me angry is the feeling that people are staring at me! Leave me alone, it isn't my fault!!!
What annoys you @Izzyjamal ?
Izzyjamal
Good advisor
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Isabel Amaro
Angus23
Good advisor
I can't stand the fact that people think I am lot older than I am due to having a chronic disease that has made me out of shape.
Cervicaldystonia
Good advisor
@Izzyjamal @Angus23 I agree with both of you. I have definitely aged beyond my years, both emotionally and physically.
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velocette
Good advisor
@Cervicaldystonia Well I will contribute by saying that I am Male and 84 years old, however in the middle of July I was struck down with incredible pain around my back and legs, I was seen by a Physio at our local surgery that confirmed a problem, then I had to wait about 5 weeks to get a correct Diagnosis and it was confirmed that some back muscles had stopped functioning. I now have to wait until the end of October to begin treatment, so in the meantime I have to soldier on imitating Quasimodo and lean forward to gain some pain relief. But in reality I have to stay in the house and swallow pain killers
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Jim c
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Izzyjamal
Good advisor
Good Afternoon My Lovely 😊 Friends!!!!
Do you know what really is doing my head in???? The side effects of my medication... I was 50-55Kg now I’m 100Kg!!!!
I hate myself I can’t see me on a mirror I ended up buying clothes size 32 to hide lumps and pumps!!!!
Honestly.... I look like a whale 🐳 and it hurts so much!!!!
All the medication is for my symptoms as it has no cure and it’s med for life!!!!!
But come on !!!! My breasts are like to extra size watermelons 🍉......
I hate to *€$*#%~< SMA!!!!!!
Hugs 🤗
Izzy
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Isabel Amaro
Izzyjamal
Good advisor
Hi Sorry 😐 That’s My Frustration Speaking!!!!
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Isabel Amaro
Cervicaldystonia
Good advisor
@Izzyjamal Good afternoon to you too :)
Sometimes with the medication it can be a lot of water weight or do you find that your appetite has increased too?
I have definitely put on weight from medication too...and it doesn't help that I feel less enthusiasm to move or be active :(
Izzyjamal
Good advisor
Hi,
My medication make my really thirsty but I hardly eat anything but in five years I €^€><##^^> SMA MADE ME A MONSTER!!!
My confidence is down well.. Really down!!!
I only get out to medical appointments.....
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Isabel Amaro
Cervicaldystonia
Good advisor
@Izzyjamal yes, it can be so hard on confidence :( Especially when it is a rare disease that no one knows anything about.
I read your testimonial and it seems so difficult...how have your doctor appointments been going recently?
Izzyjamal
Good advisor
Good Afternoon to All!!!!!
Yes I must admit that it is a very very very rare Neuromuscular Disorder...
I did the “full round!!” But then Dr. Roberts did an EMG and when I looked to the results I knew!!!! My life finished there. The rest was horribly painful exams and it was confirmed!!!!
Dr. Roberts told me that I had SMA and I did not listen to nothing else!!!
Dr. Roberts is My Angel! He did everything that he could to control some of my symptoms!!!!
At present 5 years later I go to A Ventilation Unit because my breathing muscles have been affected!!!!!
Dr Bentley my Respiratory Consultant is an Angel as well.
Im dying I know and there is nothing that can be done!!!!
One day per one day.... I shake( my symptoms) a lot and I get frustrated with the things that I can not do!!!!
I live alone so I shout to the walls!!!!
It is not easy!!!!!! My background of 30 years of Nursing do not help!!!!!
LOVE
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Isabel Amaro
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Izzyjamal
Good advisor
LMorning My Friends!
Happy Easter 🐣 to all.
Please take some time and “shout” loud here if you suffer/live with a Muscle Disorder and what do you do every day, please!
HAPPY EASTER 🐣
HUGS 🤗 AND MY LOVE 😍
Izzy.