cervical myelopathy

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hi im new to this site , and would like to know if any one out there suffers with the same problems im having and if so what can i do or who can i turn too for help and support as my gp doesnt seem to care less ,what it is is over a year ago or more i started to notice my feet were feeling sore to touch yet they wasnt sore , went to the doctors many times over this and about them feeling very cold and painful with the cold ,got fobbed off each time them saying they couldnt find anything wrong to pinpoint what the cause was , 9plus they did no tests or sent me any where ,then my feet became so very sensitive to touch i couldnt and still cant bare anyone to go near my feet ,then i started with them burning going numb and electric shocks going up my toes ,and it feels like brillo pads are on my feet even if i pat them dry been many times to the doctors finally middle of last year my gp said i had nerve damage ,how she came to this i wont know as she wasnt specialist in this field ,prescribed me lyrica and they made me feel sick and didnt do anything , went back they gave me gabapentin and dumped me on them and been left i got in touch again as i was suffering like i am now badly all they said was increase the dose finally they refered me to a neuroligist which i had to wait over 13 weeks to see in the mean time my hands have started with the burning feeling pins and needles, going numb and its agony to touch water and even wash my hair etc as it is hell it constantly feels like brillo pads are going over my hands , i cant open tins,nor fasten buttons nor shoes and its very hard to cope with , i finally got to see a neoruligist in jan 2012 , he said i have cervical myelopathy prsecribed me nortriptaline and that was it discharged me ,is there any one out there that could please off any advice or help to help me make this condition any better ,i also have very bad pain in top half of spine that is worse when i lie down the gabapentin the nortriptoline ,tramadol ,paracetomal are not helping at all i also have carpel tunnel syndrome in both hands had that for yrs

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  • Posted

    Hi, Sorry that you are going through it at the moment. I start with CS when I was 28 I am know 50. Over the years I suffered, the pain killers, collar's. I knw have to sleep with the top part of my bed raised. It is the night time that is worse, your hands go numb. But I have found relief. I started to see a reflexologist, so one week reflexology and the next week massage, because they know what to work on and what not to work on. As you can get it on the NHS, I had to pay. I see my reflexologist only once every 3 months now, she made all the different. If you find a good one. If you are in the Suffolk areas, I recommend Wellbeans they know what they are doing. I also found watching what I eat has helped.
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  • Posted

    thank you i live in leeds i dont think i would get any help like that on nhs but i would even pay if i could get some relief
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  • Posted

    Hello Ciderqueen, funny enough I've just come back from Leeds after a day out! Anyway, back to business...

    Im 47 and had CS for about 3 years now, brought on after an intense computer typing session at work. My doctor was very much like yours.. he didnt know what it was. He said "its impossible fo you to have both pain in your feet and hands at the same time for one problem".. it must be stress?? Then it was Carpal tunnel, and I wore wrist straps for months in bed; another misdiagnosis. Pain killers barely work.. a common story it seems. Three years on I know go along to the same doctor and he says he gets up to 3 people a day through the door with it, and its an understated condition! All the emphasis on computer work these days can only make things worse I think

    Anyway, I had an MRI and it showed some narrowing in my neck which maybe pressing on nerves, but nothing definate. . I use voice recognition (Dragon) now for nearly all my work applications and it really helps but its hard work! Grafting in the garden, or building work have NO effect on me, only it seems keyboards! Nighttime dead arms and fingers are a fact of life. Did you know that the little finger, and the rest of the fingers have different nerve paths? So if you get either just a little finger, or the rest of your hand dead in the night thats the reason why apparently. I have no solutions for that I just live with it, but I do use up to 50mg of amitriptyline on and off when things are bad. I tried its brother nortrip that you used and it had no effect so its a bit of a lottery.Other than that I also just live with the neck and shoulder stifness/pain.

    Sorry I cant be more helpful, as with most of us we just tell our story hoping it may just help someone else. Does anyone know of any CS help groups in the UK or do we have to setup one up?

    Kind regards.

    Martin in Cambridge.

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  • Posted

    Hi Martin in Cambridge. Just read your March post, and would like to know if there are any cs groups in the UK. I am in the north east of scotland, so it might have to be a 'virtual' help group, if there are now actual groups.
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  • Posted

    Hi Kaytee, sorry Im not aware of one presently but I'm sure there must be something out there. Funnily enough I have recently stopped taking my meds and upping the exercise in a big way (walking/jogging). My fingers nd arms still sting with typing but my neck has been quite a bit better.

    I'll do some digging and see if I can find a CS group on line. Stay tuned and I'll post something in either case.

    Martin.

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  • Posted

    ThanksMartin. I have been down the road of trying to stop the meds, but this was not for me. My recent visit to the physio has made me more worried that things are not improving. I would be interested in a group, even if we start one ourselves.

    Cathleen

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  • Posted

    Hi all, I am new on here, just been diagnosed with cervical myelopathy after having back pain for 16+ years, upper and lower back. Had 2 ops for spondylolethesis with metal rods l5-s1fused and anterior cervical discectomy with coral cage and metal plate c5-c6 fused, now this!! Been referred to neurologist as orthopaedics do not want to know now. MRI showed narrowing of spinal cord at c5ish area and l4ish area. Clumsy hands and feet, urgency urination, numbness when seated in bottom, lower back and numb hands at night along with lower and upper back pain. Is there no end to all this?! Great to know I am not alone in this I have enjoyed finding you all!

    Catwoman123 Hants

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    • Posted

      Hi. Ive just read your post.

      Hope your better. Ive just had a c5c6 corpectomy with cage & plate in Leeds.

      I had cervical myelothopy.

      Im 53 & my legs went numb 6 months ago.

      Just hope my legs come back as im struggling to walk & work.

      Since my op i have neck ache a lot. I didnt have it before.

      Just pray my leg feelings come back.

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    • Posted

      Hi Gillian67443

      I am still much the same but have found meds that suit and adapt my life to fit the pain, numbness, clumsiness etc. Find sitting still worse problem so stand or lie down a lot. Walking helps me on days when it is possible though that causes pain too. Have lot neck pain watching TV, reading etc where the neck is in a fixed postition. Just have do a bit of everything, in moderation is all the advice I can give, and be patient. Good days come as well as bad ones. I hope you get on ok.

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  • Posted

    Hi

    My Mother In Law has very recently developed all the symptoms described as a result of Cervical Myelopathy. She has not yet been diagnosed with Cervical Myelopathy but is at present awaiting an MRI scan. She is 90 years old and the symptoms have developed very quickly. Within 3 months she has become confined to a wheel chair, cannot walk or support herself, cannot hold cups or cutlery.

    Has anyone any advice of how we can relieve her symptoms.

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