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TOPIC: Introduce Yourself

Introduce Yourself 10 months 1 week ago #4133

  • Rita.S
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Hi,

I have paroxysmal dystonia in the left side of my body. Have had this for 4 years, and was diagnosed this summer after years of misdiagnosis. I feel a little isolated with the condition as I know no-one else who has it!

R
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Introduce Yourself 3 weeks 5 days ago #4186

  • Dave
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Hi everyone,

Dave here. I am 24 years old, and I have been dealing with a tremor/dystonia for 4.5 years now. It truly began as a sort of tremor, but then I realized it would only occur when looking to my left. In 2016, I began to realize my left ear pulling to my left shoulder, and the muscles on the left side of my neck would spasm. It wasn't until this summer that I was diagnosed with cervical dystonia, as I had expected after more research.

What I hope to gain from this forum are methods to provide relief from symptoms that people have had success with. I am also curious researching commonalities between those afflicted with this condition. I could dive into these topics right here and now, but that could take all day so I will leave it here as is.

I wish you all the best in finding relief as well as answers for this condition that can be very difficult to understand.

Happy Holidays!
Dave
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Introduce Yourself 2 weeks 5 days ago #4187

  • jellyfishy
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Hello, I’m Hat
I’ve had blepharospasm for about 20 years now, not initially diagnosed though. I find that the botulinum injections work for me but am struggling to get regular appointments at my local hospital. I should have been seen and injected last September .... still waiting. The last injections I received were last July. The hospital dept I attend only has one doctor who does the injections, plus they only hold a clinic once a month on one day, therefore if you can’t attend for any reason you have to wait another month. If the doctor is poorly then no appointments happen, not her fault I know, but there is no other provision when this situation arises. My appointments are regularly late, this is the norm.
I eventually telephoned towards the end of November to ask for an appointment and was offered one the following week (why didn’t they invite me sooner), but had to decline due to Christmas commitments down south, then I sadly had to cancel the January appointment due to a family funeral. So now I will have to wait until February (I hope).
Sorry about the rant, i don’t want to moan as I know there are folks much worse off than me. I’m just wondering if there is anyone else out there from the South Lakes area having the same experience?
Thanks, Hat
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Introduce Yourself 2 weeks 5 days ago #4188

  • KeithS
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Hi Hat,

Sorry to hear that you're not getting the help you need. The NHS now has an internal market, so in effect, you can choose where to have your treatment. I transferred my care from one hospital to another as the care was so much better at consultant level (Although the nurse led treatment was excellent).

Have a look at any other hospitals you might be able to travel to and see if they offer the same treatment would be my advice. Happy to speak further if it helps.
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Introduce Yourself 2 weeks 5 days ago #4189

  • jellyfishy
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Thanks for that Keith, I have been thinking about investigating that. Do you happen to know if I can contact a hospital directly, or would I need to go through my GP?
Best, Hat
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Introduce Yourself 2 weeks 5 days ago #4190

  • KeithS
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I asked Hospital 1 to transfer my care to hospital 2. They sent a referral letter and I was sent an appointment through quite quickly. I did chase it up to make sure the letter had been copied to my GP and definitely sent. The alternative is to go through your GP and ask her to shift your care to another specialist unit as you are not receiving care appropriate to your needs. Having said that, your hospital has offered you appointments, so if you're happy with the care provided but not happy with the waiting times, then given the current pressures in the system, perhaps it might be better to stay where you are but chase a further appointment?

Either way, you have options :-) Good luck!
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