Finally, a diagnosis - I have Cervical Dystonia. Thank you so much Dystonia UK for putting me on the right path.

[HKAnne]

Hi, I am new here.

I realise some people have waited years to find out that they have Dystonia, I have only been suffering for six months. However, it has been a journey - since last march have seen 1 x osteopath, 2 x physiotherapists, 2 x GP's, an on-line GP, a GP at A&E and finally, today a Neurologist.

I even asked the second physiotherapist on my first visit if she thought I had Tortocollis, she said she had never heard of it. On my last visit I asked her if she thought I had Cervical Dystonia, she said "definitely not, as you have not had it long enough".

Today I had an appointment (self funded) to see a Neurologist to confirm my condition, it took him 5 minutes to diagnose. My GP was reluctant to refer me as the first physiotherapist that I saw told him that I had a postural deformity. Only after I said I was happy to self fund did he agree to refer me.

The next steps are a MRI scan to see if I have primary or secondary CD and then botox injections in the affected muscle in my neck.

I am still in a state of shock at how little the medical profession know about this condition and how dismissive they can be when you make a suggestion.

I am extremely grateful to Dystonia UK for putting me on the right track and helping me to understand this condition.

Best wishes.

Anne

[rtn3421]

Same thing happened to me, when I saw my GP, got diagnosed with stress and told to have a look at these websites and that was pretty much it. Went private and saw a neurologist and got diagnosed with cervical dystonia straight away.

I've had the botoxin injections, helped a bit, but I think you need a few treatments before the final outcome\benefit can be determined.

[HKAnne in reply to rtn3421]

Hi rtn3421,

Thanks for your reply.

I am glad the botoxin injections are helping a bit, hopefully you will be feeling much better once you have had a few more. I am hoping to have my MRI scan and botoxin injections on the NHS, so I will probably have to wait a while.

I don't imagine your GP apologised for diagnosing stress!

[Hidden]

Hi Anne..welcome..Im a newbie to the sight myself.Sounds like you have taken a similar path as many of us .For me..Ive learned to be very vocal with my doctors and not let them run the show.It took a lot of years for me to open my eyes and take charge of my own health and body. Just know your not alone.

[HKAnne in reply to Hidden]

Hi Monkeysmiles1,

Many thanks for your reply. I hope you are feeling much better and that you are getting the correct treatment.

Good to know that there is support on this forum - thanks again for your reply.

[Rkai]

Hello

I could write the exact same information in fact I couldn't believe how the details are just the same as me. It took me a year, GP didn't know, physio didn't know, Physician treated me for 9 months, in the end I found info on American research site and took to GP, he then referred me to neurologist. I was so annoyed at being not believed, I went to see our MP (first time ever). He wrote to Health Minister asking why such) low profile and what training do GP's have on Dystonia....reply was a copy of their course syllabus.....guess what...the word Dystonia didn't appear.

Anyway as you say thank goodness for the Dystonia Society.

[HKAnne]

Hi Rkai,

Thanks for your reply. I am sorry you had such a grim journey. I hope you are getting the correct treatment now and are feeling slightly better?

I do admire you taking your complaint to your MP, I expect Jeremy Hunt was still the Health Minster at that time, I think they just send out standard letters to everyone - they just change the name, address and date!

Thanks again for your reply.