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I am 41 years old and was diagnosed with Syringomyelia a...

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I am 41 years old and was diagnosed with Syringomyelia and Intramedullar ependynoma tumors about 2 years ago. I have suffered extreme nerve pain since the biopsy of my main tumor at C7, to the point that I couldn't stand having a shower or my child touching me:yikes:because of the pain! Also increased neurological pain in the whole of my body.

I say thank God for Gabapentin... I take 1800mg a day which enables me to function better than I would if I didn't take the drug. I get tired so I rest (I can not put this soley down to Gabapentin because my illness also has this effect). The only side effect I have noticed is 'claustrophobia' particularly in the MRI machine I never had it before I started taking Gabapentin sad....

I always say 'If I could only choose one drug' Gabapentin would be it every time even before my pain killers:magic:

[i:ffe2dae553]This message was automatically imported from the original Patient Experience[/i:ffe2dae553]

2 likes, 2 replies

2 Replies

  • janet68145
    janet68145 Guest

    Posted

    Hi, I have recently been diagnosed with Syringomyelia at the age of 47. However, it appears that nobody has ever heard of it, even medical people! I imagine that you like me have been pushed and pulled from pillar to post. At one point an Orthopaedic surgeon suggested I saw a psychiatrist! (evidently he thought I was making up the pain, and everything else that goes with syringomyelia. I was wondering if you had the following: Shower water feels like being covered in very sharp needles? I have seen the syrinx on a scan. I have numb parts of my body, always cold hands, weekness in hands and hips, knees etc. My condition is further complicated by the fact that I have Kyphodosis (double curvature of the spine. I shall ask my GP for Gabapentin. I take morphine and Mirtazapine for the strange sensations. Anybody out there have advice for newly diagnosed Syringomyelia person? Any advice would be welcomed. J
  • Annah71
    Annah71 Guest

    Posted

    I am 46 years old and was just diagnosed with syringomyelia. Well it showed on an MRI I had two and a half years ago and my drs PA just told me about it. Don't really know any about it yet. 

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