Recently Diagnosed: Hi All, I was diagnosed... - Dystonia Society

Dystonia Society
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Recently Diagnosed

eosheauk
eosheauk

Hi All, I was diagnosed with Cervical Dystonia in March. I feel I've had dystonia maybe since I was a teenager (I'm 39 years old) so cried with relief when I was finally diagnosed. Doctors always put it down to anxiety - I just felt like a weirdo for years and years, and like it was my fault. It was a relief to finally be diagnosed; as soon as I discovered the disorder and read about, I knew that was what I had. I was relieved to realise there are people out there like me!! It's such a difficult thing to explain to people (although I still feel strange telling people - I think I'm that used to trying to hide it!), and I struggle inside every day but keep going. This is the first time I have spoken to others with the disorder.

I started Botox injections last week but haven't had any relief yet, I need to be patient I suppose! Just wondering if anyone finds exercise helps? I used to exercise a lot (running and gym) but am finding it too painful at the moment and my neck seems more spasmodic afterwards. I also worry I could be making things worse longer term, what do you think? Also if anyone has taken vitamins etc. thats helped, please let me know.

Thank you!

Eils.

11 Replies
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I'm in the same boat, I had the botox injections a week ago, no noticeable effect so far. My view is that doing exercises is really helpful, helps to take your mind off of the dystonia and also sleeping is better. Need to be careful what exercising you choose to do, I tried yoga and ended up with a massive neck ache, now I just use my exercise bike

eosheauk
eosheauk
in reply to rtn3421

Thanks for your reply. I was actually going to yoga tonight ...might still give it a go but will take it easy. Cycling might be a better bet though in future as doesn’t involve much strain on the neck. Let me know how you get on with the Botox.

Upsman
Upsman
in reply to eosheauk

My injections take 2-3 weeks to kick in , even on a regular treatment basis . They like your neck to be twitching as it absorbs the Botox better , so you almost start again each time . My cervical dystonia started 1 1/2 years ago, was diagnosed after 6 months of not knowing what it was . Botox makes it liveable , as for people looking and wondering . I travel a lot , currently in a bar in Cologne , sod em 🤣

rtn3421
rtn3421
in reply to Upsman

I was told it would take a week, but nothing happened for a couple of weeks, then over the last few weeks my condition has improved. I can now look forward instead of always looking to the left.

Hi Eosheauk , like you it's such a relief to finally having a name put to your condition . For the last 18 years I've been suffering from voice loss . Only every time I've seen someone I kept getting told there was nothing wrong . Since March 2016 I've only had a normal voice for around 6 months in total . I was even told it's all in my head and I'm afraid to talk!!!! . Still waiting to see a psychologist n prob won't be seen till at least Oct at the earliest . I've had 3 injections of BOTOX but 6 doses in total as he increases the dose every time , looking at 4 doses when I next go , but unfortunately it's not worked for me so far . I'd say see if the gym can set you out a programme of exercises to do n take it easy .

Thanks for your reply. It’s so frustrating isn’t it, sounds awful what you went/are going through. Is there anything else they can offer you if Botox doesn’t work? I hope you find a way to manage it, let me know how you get on.

HollyBee51
HollyBee51
in reply to eosheauk

I have had 2 BOTOX treatments this year and neither helped at all and I believe the BOTOX actually affected me systemically in a negative way , although all my doctors said that it stays locally where it’s administered and doesn’t move to other parts of the body. Within 3-4 days of my first treatment my other MSA symptoms worsened, I got weaker and wobblier and I fell for the first time since I was diagnosed (the first of 20 falls last year). My docs say they have nothing more to offer me and in essence I guess I’m supposed to make myself comfortable and sit around and wait to die..... which I refuse to do. I’ve tried plenty of cervical collars and neck supports with no luck and I’ve had scads of physical, occupational and speech Therapy. The therapies have been helpful for a bit of immediate relief but unfortunately nothing long lasting. But the one solution I have tried is telling my friends to write their names on their shoes so l’lll know who’s talking to me if I don’t recognize their voices since I can’t t look up to see their faces!!🙄😳😅. But, I live in hope; a miracle is on its way!!

rtn3421
rtn3421
in reply to HollyBee51

Apparently you can be immune to the botoxin, might want to ask your doctor if that is the case for you. You have my sympathies as I'm experiencing the same wonderful situation myself. I've had a bit more luck with the neck collars, any physical object near my head reduces my dystonia, even wearing a hat reduces my dystonia 50%.

HollyBee51
HollyBee51
in reply to rtn3421

Rtn3421

You mean that when you wear s hat, you can raise your head 50% more.? If so, that must be a great relief ! I’d love to have a 50% improvement over my status quo. That would mean I could look short people in the eye!!

rtn3421
rtn3421
in reply to HollyBee51

For me the problem is my head movements are restricted horizontally, vertically I'm kinda of ok. If I wear a hat my head doesn't move so much to the left and I can move my head to the right somewhat. Even better though than a hat is that travel pillow I mentioned in another post, that knocks out my dystonia about 80%.

Hello

I am also just like you with cervical dystonia which took ages to be diagnosed. I too have had Botox injections which did not work on me. Apparently Botox does not work on some people. On the exercise question, I do QiGong , a form of Tai Chi. It is gentle, peaceful and yet works on all muscles. It is not tiring, in fact you feel energised afterwards.

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