Thread: Syringomyelia
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Old 09-28-2008, 10:20 PM
csinfo csinfo is offline
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Join Date: Sep 2008
Location: Arizona
Posts: 7
15 yr Member
csinfo csinfo is offline
Junior Member
 
Join Date: Sep 2008
Location: Arizona
Posts: 7
15 yr Member
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Quote:
Originally Posted by choudsal View Post
Thanks for your reply. I asked the Neurologist what i had and he just said it's called a cyrinx- i'm not sure if i've spelt it right- he's given me Gabapentin to take 3x a day and co-dydramol 2 four x a day and the pain clinic see me next month for pain releif- injections into my neck. I have good days and bad days, on a good day i can manage but am quite slow and have to pace my self, on a bad day i need to put myself to sleep and with 2 young children this is very difficult. i am finding easy tasks at work difficult to carry out and my work load is just building up because i cannot complete tasks due to the pain i'm in and also because of the side effects of the medication. Luckily my line manager is good and he has authorised leave for the next month and so i will be working part time for the next month- during this time i want to see if i can make a claim on my insurance policy, i'm have a feeling this condition comes under permanent disability, if it does then i should be able to claim and i would get some financial releif and be able to reduce my work load on a long term basis- does anyone know of anybody with my condition that have had to make a claim on there insurance policy and can share some information about it with me. Also does anyone know of any society's in the south east region of the UK that offer support for poeple with my condition?
Thank you for all your information and help.
Yes the syrinx is the "fluid filled cyst" in the spinal cord, syringomyelia is the disorder, I hav acm1 and NO syrinx, but I am on gabapentin-neurontin and it helps my pain a little, and I do phys therapy-core, tens, masage, ultrasound, all helps a little, I adjust my life a lot to my symptoms, I have days when nothing gets done, and other days when it is a triump to just get out of bed and make it down my house stairs and pack a quick lunch for my 2 kids,and dont be afraid to ask for help, when you need it! It is just impossible to get by without help- ask loved ones, friends, co workers, listen to your body, and rest when you need to, be "good" to yourself. And realize that things you could do before quickly, now may take a lot longgggger to get finished-give yourself time/slow down, and dont feel guilty about it! If you need a handicap/car sign- ask your doctor/dmv. I am not sure about the uk , but it is in the social security book for disability'syringomyelia" in the us
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