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Shout what really gets you angry!!!!

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Izzyjamal

20/04/2019 at 09:37

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Izzyjamal

Last activity on 28/11/2020 at 09:22

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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.

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Cervicaldystonia

23/04/2019 at 09:48

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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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 ?

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-04-23 09:48:03

Izzyjamal

23/04/2019 at 10:01

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Izzyjamal

Last activity on 28/11/2020 at 09:22

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Me????The gossip behind me when I’m out. Can barely walk so I use a four “wheller!”. And, people talk loud so I can hear.... “ Oh what a shame so young and a crippled!!!”Honestly keep your thoughts to Yourselves!!!!!It really annoys me!!!!!

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Isabel Amaro

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-04-23 10:01:20

Angus23

28/04/2019 at 12:16

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Angus23

Last activity on 20/11/2021 at 11:33

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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.

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-04-28 12:16:23

Cervicaldystonia

29/04/2019 at 14:14

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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@Izzyjamal @Angus23 I agree with both of you. I have definitely aged beyond my years, both emotionally and physically.

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-04-29 14:14:59

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velocette

24/09/2023 at 13:45

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velocette

Last activity on 16/10/2024 at 18:10

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@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

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2023-09-24 13:45:37

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Izzyjamal

30/04/2019 at 14:12

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Izzyjamal

Last activity on 28/11/2020 at 09:22

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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

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-04-30 14:12:29

Izzyjamal

30/04/2019 at 14:14

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Izzyjamal

Last activity on 28/11/2020 at 09:22

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Hi Sorry 😐 That’s My Frustration Speaking!!!!

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Isabel Amaro

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-04-30 14:14:08

Cervicaldystonia

30/04/2019 at 14:17

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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@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 :(

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-04-30 14:17:25

Izzyjamal

30/04/2019 at 14:21

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Izzyjamal

Last activity on 28/11/2020 at 09:22

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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

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-04-30 14:21:34

Cervicaldystonia

02/05/2019 at 18:32

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Cervicaldystonia

Last activity on 13/12/2020 at 12:40

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@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?

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-05-02 18:32:56

Izzyjamal

02/05/2019 at 19:04

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Izzyjamal

Last activity on 28/11/2020 at 09:22

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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

Shout what really gets you angry!!!! https://www.carenity.co.uk/forum/muscles-skeleton-joints/living-with-diseases-affecting-muscles-joints/shout-what-really-gets-you-angry-2802 2019-05-02 19:04:21

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