My story: Hi everyone, I have a diagnosis... - Dystonia Society

Dystonia Society

619 members195 posts

My story

sharlynn profile image
2 Replies

Hi everyone, I have a diagnosis of cervical Dystonia and also rheumatoid arthritis. I work part time and my work colleagues are great. All my family live very close and help/support me loads. I try to stay positive and enjoy trips away. I do have a lot of pain in my neck and shoulders, I have Botox every 10 weeks which helps but my nurse said she has to gradually up the dose so hopefully will soon get much more bearable. I too need to rest when I can otherwise everything flares up, I try not to let it get me down too much. I find having to explain it is tiring and I do get quite embarrassed when my head pulls/ spasms . I struggled for 3 years before I was diagnosed and that was only after I had researched my symptoms I came across an interview with Derek Thomson (played Charlie in Casualty) and it was exactly what I was going through, I mentioned it many times to my rheumatologist and they just kept saying it was my RA, I insisted on being referred and I think they agreed just to prove me wrong, well I was right, thank god I came across that interview so I could get the treatment I needed. Well that's my story, so glad I will be able to share with others. X

Written by
sharlynn profile image
sharlynn
To view profiles and participate in discussions please or .
Read more about...
2 Replies
starveycat profile image
starveycat

Hello Sharlynn welcome to the site, it is rather a new site so not too many posts, but seems to be a very supportive one. I have only been posting on this site a short while,

Ali_H profile image
Ali_H

Hi Sharlyn and welcome,

I also live with RA and dystonia (blepharospasm) and I find my dystonia by far the more difficult of the two conditions to live with.

All the best

Ali

Not what you're looking for?

You may also like...

Am I expecting too much from my first Botox?

This is my first post here. I was first diagnosed with cervical dystonia about 8 years ago. Over...
phil999 profile image

Floating in water with cervical Dystonia

Hi I’m new here I have neck dystonia my left shoulder never really relaxes I have Botox injections...
Billy1999 profile image

My husband refuses aids to his walking

Hi my husband & & are 73. He had a quite severe head injury in 1981 & recovered manageably well....
Caroline4244 profile image

Feeling hopeless. My neurologist has discharged me after 6 years

Hello. I was diagnosed with craniofacial dystonia 6yrs ago. I have been treated by my consultant Dr...
leepen profile image

giving botox one more chance

had botox last fall, made my neck muscles very weak and painful, to the point of that doctor would...
Alley1 profile image

Moderation team

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.