Patients Nervous system diseases

Do I have cervical dystonia?

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charlesdickens99

19/01/2023 at 12:58

charlesdickens99

Last activity on 21/03/2023 at 12:35

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Hello there,

So about 6 months ago I started to find it harder top turn my head to the right. Wan't a huge problem or worry.

Then after about 2 months of this my head kind of stuck to the left and up. I could turn to the right with effort I could put my head straight with effort but as soon as I walked or bent down it would go back to the left.

It got so bad I had to stop working and driving my car. I could hardly look to the right by now.

When I turned my head i could hear this crunching and popping sound. And it felt so tight where my head my heads meets the neck.

I do not feel like my neck has any issues. There is no pulling as such but I seem to lack the

power to pull my head to the right.

This went on all of November/December. Xmas ruined. I didn't want to go out as without effort my head looks tilted. If i stand still I can get it straight. Soon as i move it takes a lot more effort. Looking down hurts.

There is no movement /spasms tremors at all.

Here is why I think it could be Dystonia. When i touch my left ear...I can feel the tension in the back of my head go and i am about 90% better. Soon as i stop within two minutes it is back....

It is better since November/December. I can walk around and drive. But it's is far from gone. I'd say it got about 30-40% better since November (worse time)

I cannot think any injury that could have caused this. BUT i was hitting the treadmill every day from Feb - August. Always looking down at that computer thing etc..This is when I started to feel my problems.

I went to Dr's. I have little faith. Just said it was a whiplash injury and to keep stretching. Come back in two months etc..I do stretch every day. I practice keeping straight/ rotating etc.. If it made any difference it is small. And it has dragged on for so long.

So what do you think?I think it could be Dystonia.

If not ,what could it be? Does whiplash last 5 months+

I hear there is an MRI scan now that cn diagnose Dystonia...But i take it there is no way you can get this on the NHS?

Thankyou

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Rahul.R

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26/01/2023 at 11:09

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Rahul.R

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Last activity on 16/03/2023 at 10:05

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Hello @charlesdickens99

How are you feeling today? :)

Thank you for opening this discussion. I am very sorry to hear about your condition. Although your symptoms are very reminiscent to that of dystonia, a medical practitioner would be the best to be able to judge the symptoms effectively.

I shall tag a few members who may be able to provide some information on the matter-
@Creamware2 @Louise71 @Cath10 @Dippy40 @SunshineW @Sandokai @Widjaja @lynndoconnor @Tillybilly @cinar73 @GillWil @joanne4142 @danimaddonnigmailcom @AngelaHackworthy @Zozime @Woolydee @frannie1956 @Luciamasuccio @Walletr @Gemma2803 @Mazz73 @meghol @Audrey# @KATHRYNM @Donkey28 @deirdra

Do any of these symptoms look familiar to you. What advice would you give in this situation? What could provide relief?

Let us know your thoughts in the comments below!

Wishing you a great week ahead,
Rahul from the Carenity team

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Rahul Roy

Do I have cervical dystonia? https://www.carenity.co.uk/forum/nervous-system-diseases/living-with-neurological-diseases/do-i-have-cervical-dystonia-4944 2023-01-26 11:09:47

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SunshineW

Edited on 26/01/2023 at 12:39

SunshineW

Last activity on 23/04/2023 at 16:32

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@charlesdickens99

I am sorry you have been going through this. It sounds extremely difficult, uncomfortable and frustrating. I would echoe what has been said above about a diagnosis.. That said I had an unofficial diagnosis from a Cairopractor. Who took one look at my neck and posture and knew exactly what it was. So this would be a good place to start. Then follow up with a GP. Obviously it will hold more weight if a physio/ cairo has suggested it is more than whiplash. If you are referred by the GP you will be able to get a MRI on the NHS. This is how I was diagnosed. A friend paid private for an MRI (approx £300) so not as much as you would think and was seen alot quicker.

Some of your experience does sound like my experience but yours seems to have happened over a shorter time frame. Dystonia does lie dormant within some of us until triggered. Mine was caused by a small injury to my neck and exasperated by trauma (a death of a close friend). So there can be a stressful or emotional element to its cause. Maybe something to consider.

It is great there has been an improvement of 30-40% you are obviously listening to your body and doing what is needed. Continue as you are doing. It is working.

Botox injections in a dystonic muscle will see 90% improvements in most (it doesn't work for everyone) but so many, say it gives them their life back. So there is hope.

In the meantime I would recommend accupuncture and some great You Tube videos on slow release stretches which last longer. (I can look up a name if you need me to, let me know)

l wish you all the luck. Take Care x

Do I have cervical dystonia? https://www.carenity.co.uk/forum/nervous-system-diseases/living-with-neurological-diseases/do-i-have-cervical-dystonia-4944 2023-01-26 12:26:30

charlesdickens99

20/03/2023 at 23:00

charlesdickens99

Last activity on 21/03/2023 at 12:35

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@SunshineW

i'd say it is the same for the past three months now.

I just cannot turn my head to the right without huge effort. If i relax it sits about 30 degrees to the left....no matter what i do.

I jut had an MRI scan.

if nothing shows up....it's got to be c.d then?

Even trying to type this my head wants to twist to the left. No tremours, jerks Just like my heads center is 30 degree off center.

Should know next week.

If nothing comes back on the MRI i tell them i want to see a neurologist? Take another 4 months...

Thx

Do I have cervical dystonia? https://www.carenity.co.uk/forum/nervous-system-diseases/living-with-neurological-diseases/do-i-have-cervical-dystonia-4944 2023-03-20 23:00:23

charlesdickens99

20/03/2023 at 23:04

charlesdickens99

Last activity on 21/03/2023 at 12:35

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9 comments posted | 4 in the Nervous system diseases Forum

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@Rahul.R thx i have friend requested them

Do I have cervical dystonia? https://www.carenity.co.uk/forum/nervous-system-diseases/living-with-neurological-diseases/do-i-have-cervical-dystonia-4944 2023-03-20 23:04:41

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Do I have cervical dystonia?

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