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TOPIC: Possible promoxsyl dystonia

Possible promoxsyl dystonia 1 year 3 months ago #4051

  • LucyD
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Hi there. For over 12 months now I have been experiencing severe muscle spasms in my neck and shoulder, left side, lasting for hours and hours very painful and uncomfortable. The spams also reach my hand, arm, foot but in a milder form. I have experience tremor in my arm and leg, jaw cheek and eye, all left side. I have had 2 episodes where I have lost my vision in left eye totally for few minutes at a time. Some mornings I wake up feeling achy and like Iv been in ten rounds with Tyson so worry something is happening during my sleep. My voice has changed also, becoming very hoarse and sometimes quite strangled sounding. When I am having a more severe attack my speech can become quite stuttered and slurred. Have been for blood test, Mris and CT scans and still no diagnosis. Doctor keep mentioning paramoxsyl dystonia but are quick to tell me they don't have much knowledge on the condition and so I am at my wits end trying to understand and manage it all especially without a clear diagnosis! Please can anyone help! I have attached some pics and videos of different movements and spasms I have been having to see what people think. Are they typical of dystonia? Thanks
Last Edit: 1 year 3 months ago by LucyD.
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Possible promoxsyl dystonia 1 year 3 months ago #4065

  • Beth
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I started with paroxysmal generalised dystonia just over a year ago. Sounds very similar to you. I started with body pains for a couple of months before with very bad stiffness in hands and neck. I thought I had rheumatoid arthritis. Four and a half hours after taking a pain tablet (lyrica) for the horrendous neck pain the spasms started. I have monthly storms that are horrendous that always end with atonia (stroke like appearance as my muscles lose all tone after what they go through) and daily eye, mouth and neck dystonia. I have a brain lesion that they assure me is not connected. The neurologist said it should resolve miraculously all by itself and that botox is not possible for generalised, it would stop my eye closing but I would have bells palsy from it. Therefore I am without any medical help whatsoever. Your symptoms do sound very similar to mine, I could not see any video clips. I take one day at a time, some are alright and some are horrendous. I just hold out for the better days during the terrible ones. I hope you have more luck than me with the supposed medical experts than I have.
Best wishes,
Beth.
Beth
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Possible promoxsyl dystonia 1 year 2 months ago #4066

  • Supergran
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I have similar symptons and my left side appears to be most effected but it does go to the right side as well during bad attacks. I can not get botox and there is no medications as every medication tried has resulted in severe and life threatening consequences. I have been coping for a number of years and have found adapting my life to be a comfort and to make me feel like I do still have a bit of a life. Its safe to say I have quite a toy box of management toys now!
Some examples are...I miss reading and can no longer keep my head still to read, if \I force the isse it can bring on a severe dystonic storm, so I have gone on to audio books.
For pain I use cold packs when my joints...neck in particular...feels inflamed and hot pocks when it just aches. I found an electric heat pad to be excellent as the heat seems to go deeper. When the muscles have been in spasm day after day the muscles can feel quite tight and I invested in a shiatsu massage seat. This when used 2/3 times a day can massage the knots from the muscles but I caution I do find it uncomfortable to start with, giving lots of arghhh, eeek etc but very quickly...apart from when I first used it!...the massage does become quite pleasant and of course has to be followed up with a nice hot cuppa of whatever and feet up and chill.
Another investment I made which helps with sleep is a bed genie. It is a blow up thing that goes under the mattress and turns your normal bed into a hospital type thing allowing the head end of the bed to be raised. Great for neck pain and any breathing probs.
I have peripheral nerve pain and this has to be painkillers...paracetamol and tramodol together has been prescribed for this. I also have a crisis package which includes diazapam and above painkillers.
My dystonia will take my lungs and swallow muscles were I can not talk or breathe snd if this can not be resolved very quickly then it is a trip to hospital in an ambulance for procyclidine IV. Also any other ailment no matter how minor will increase the spasms so above all else learn to be kind to yourself!

I have followed this for quite some time now and find life easier and then I push beyond my comfort zone....going out for too long, too much housework/gardening etc and every sympton I have been able to manage comes back immediately and with a vengence. I should stress here that these tips are very much management strategies and by no stretch of the imagination a cure. it simply makes life a bit more bearable.

Good luck and God bless us all as we battle daily with this horrendous condition.

Christine x
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Possible promoxsyl dystonia 1 year 2 months ago #4067

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A PS to my previous note! I have recently had to get used to a wheel chair which I wont lie about...I hate the fact I need the chair but I love the life it gives me! In short I have had to swallow any pride I thought I had and give up any notion of competing for what was once a normal life to enable myself to have any kind of life. I view dystonia as one of those friends that come along and you are not that keen on having them in your life but you can not get them to go away without bringing on alot of trouble for yourself. Unlike friends you can get rid of, dystonia is going no where so you have to find a way to live with it and that comes with ajusting your life to accomodate both a life for yourself and dystonia....I call this a new mental attitude to life.
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