Anybody with Dystonia?

Foxy16

Hi neckproblem, a bit worried about the dismissal meeting. It is usually a meeting with Occupational Health, when ill health is involved. I had several meetings with 2 lots of Occupational Health, due to having 2 jobs, they discussed my health issues, how it affected me (1 even sent me to see a neuro privately, which was a bit stupid as the diagnosis was the same), what they could do to help me, as there was no other job in either company that would have suited me more, I was let go on health grounds.

Sorry I can't help with your other questions, but I do think you need to see a Welfare rights advisor, they will be able to help with all the questions you have, and guide you through everything.

Savvy_Sue

neckproblem wrote: »

Should they also have paid me bank holidays too?

If you weren't paid for them, and you didn't have the leave added to your por rata entitlement, then yes, you should be paid for them now.

Parva

@neckproblem - I was a total !!! when I answered this as I was going on my own personal experience and I apologise. I can easily see how accidents can happen when those neck spasms take over. It's an incredibly debilitating condition. Sadly, it seems to be incurable, only 'manageable' which is not something any of us sufferers want to hear.

Once you have seen the neurosurgeon and had it correctly diagnosed you can then at least accept that this is the problem and start on the road to getting the best treatment possible. At least your GP has referred you for what you know is wrong, mine wanted to send me for physio. Quite amusing that the doctor before him kept doing that when I was in much pain and it cost me a leg due to bone cancer!

Good on you / your GP for at least getting you that appointment for a proper diagnosis. Again, my apologies for being arsey about it and hope you actually get the diagnosis and the start of treatment.

ellahenderson

im just 27 and my back hurts too specially the neck part should i be worried tooo ?

Parva

ellahenderson wrote: »

im just 27 and my back hurts too specially the neck part should i be worried tooo ?

Errrm no. You would know what dystonia was if you had it, believe me.

neckproblem

No worries and I've had two occup health by bupa who said could maybe work from home a few days a week but my company said this isnt possible. They are going to pay me 14 days holiday so thats good news bit more cash for xmas coming up! My company have sent me a list of jobs they have vacant although at the moment im not driving due to my condition.

Parva Im not sure its dystonia but it seems like it is, hopefully find out next week seeing that specialist in neurology. I suffer short term memory loss since I had this condition e.g. take a tablet and 5 mins later im helping myself to another one but my partner stopping me, my partner says im more clumsy too although I think thats because sometimes its like a battle with your own mind trying to stop the spasm thats what causes my clumsiness. I must admit even though neck hasnt improved greatly with chiro treatment they have fixed my back pain completely. Can stand for hours now and not one ounce of pain in back just need to be able to walk without neck locking up with stiffness.

standeman

neckproblem wrote: »

These are the symptoms I have, neck spasms that mean my neck locks up especially when walking though sometimes holding my head or neck or pinching myself can reduce symptoms. If neck locks up ant walk its too painful I have to push my head down and break the stiff muscle then im fine until it happens again (usually within walking again) it is very strange condition. Also I have nerve pain in my neck and it shoots down my left arm it feels like a dead arm especially if my neck tilts backwards. I think the doctor in London will ask for another MRI? My left arm is quite painful at times but feels like a trapped nerve. I also suffer memory loss since this came on. I seem to forget things ive just done. I also find um much more clumsy as my partner says I bump into her accidentally on occasions and ive chipped alot of our crockery when putting it away in cupboard and dropped glasses on occasions. Which is unlike me. I also shake most nights when sleeping but im sound asleep, my partner tells me about it the next day.

Ive received my PIP paperwork today I guess I just fill it out then send it off hoping they understand cervical dystonia?

We seem to have similar conditions.

I had my first dystonic episode about two years ago (at the age of 45). I was in a meeting with a new client and my head suddenly turned to the right and seemed to stay locked in that position for what seemed like an age. I thought, wow, what was all that about?

This involuntary turning of the head continued, albeit in a less intense fashion, and I was prescribed Lexotan by my GP (as he thought it was due to anxiety). I thought anxiety was unlikely as, since the first attack, the head seemed to turn primarily when I was alone i.e. with no one watching my movements. After about a year, I Googled my symptoms and noticed that the results were pointing toward Cervical Dystonia (CD). I went back to my GP and he referred me to a neurologist. At this juncture the associated pain was minimal.

After the neurologist confirmed CD, he gave me my first Botox injections last August. Unfortunately, an incorrect muscle was injected and the dystonia worsened. I had a small interim injection in October (in the correct muscle this time) and I was, in effect, back to where I was pre-first injections.

Then, in December, I noticed that I had a sharp pain in my left shoulder with the pain extending down my left arm culminating in a numb thumb and index finger. I was sent for an MRI which confirmed that I had two herniated discs and severe arthritis in the neck (brought on, I believe, by the continuous dystonic movements). This was causing a nerve to be pinched.

By January of this year the Dystonia had worsened and I was in chronic pain (in the neck region). Whether this was due to the Dystonia or the discs/arthritis, or both, I wasn’t sure.

I had another round of Botox mid-Jan and also had an operation to release pressure on the nerve. The latter eliminated the shoulder pain and the numbness in the fingers. However, the neck was still turning/twisting (although to a slightly lesser extent).

I am now having treatment in a specialised Dystonia Clinic in Dublin with a new neurologist. He gave me some more Botox 3 weeks ago but unfortunately there was zero benefit this time.

I had a top up today (even though it is not best practice, the neurologist felt it was justified in my case) so we will see how that goes. I have to go back in two weeks and he said, if there is no improvement, then we will look into oral medications (although both he, and my previous neurologist, gave the impression that they didn’t have a lot of faith in these).

I have been researching DBS and spoke to my neurologist of the possibility of this for me. However, he said that DBS is the option of last resort and that we are a long way from that point. Even if I was referred for DBS, Ireland doesn’t have the facilities to perform such an operation. Patients, who are deemed eligible, are therefore sent to the UK for this procedure and all associated post-operative appointments.

[FONT=&quot]My Dystonia is certainly exacerbated when walking and driving. This is therefore having a dramatic impact on my ability to perform even the most mundane of tasks. Also, sitting at my desk is very tiring – I often have to support my head with a hand. Like you, I often feel clumsy when walking. I put this down to my posture and restricted head movement.[/FONT]

[FONT=&quot]I do, however, have faith that a solution will be found to let me get back to some form of normality. [/FONT]

Parva

The only time I'm ever free from the effects of Dystonia outside of sleep are when I've had alcohol to the point of being almost 'tipsy' and any point beyond that. It's not really an option getting drunk everyday but when I do have a few, the relief is immense and my head actually stands up straight like it used to! (I'm sure there's a lot of innuendo's to be had there)