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Spinal Stenosis or something trapping the blood supply to my legs

Posted , 7 users are following.

rearview
rearview

Hi all I have come here in desperation. I was diagnosed with bilateral lateral recess stenosis of the lumber spine I also have some stenosis in the cervical spine. 4 years ago I was riding pillion on my friends motorcycle we hit a massive pothole and since then when I lie down weather on my back  stomach ( which I cannot do anymore) on on left right side my legs go freezing and I get pins and needles and weakness. Doc's keep telling me walking causes claudication . Thing is it doesn't afect me when walking only whilst laying down. I am getting very little sleep :-( I have been offered no treatment apart from an epidural which I had 4 weeks ago. My question is  does anyone understand why it happens in certain positions , it is scaring the hell out of mne as I feel if something isn't done I am fearful I may lose my legs . I also have bronchiecstasis, had 2 heart attacks , Peripheral neuropathy due to spinal problems and a secondary to PN is Erythromalalgia (sorry if my spelling is off.) My Doc is usless he fails to refer me to physio or pain management programme , I have to push all the time. He also is very patronizing, when I went to see him with the EM he said look my hand is there and there is a fire so my hand is burning . Then puts his hand out again and says no fire I am not burning :-( I have been diagnosed with EM ( man on fire syndrome)  which by the way I diagnosed myself first by a professor of neurology in London which is when I found out I had PN. At first my last doctor told me the burning was the menipause and sent me to a phychiatrist only to be told there was nothing wrong with me mentally. I am at my wits end. I live alone and don't know where to turn too. Thanks for reading. Where do I go from here ? :-/

2 likes, 19 replies

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  • lindagkelly
    lindagkelly rearview

    Posted

    Hello Man on FIre,

    You spelled Erythromelalgia perfectly. Did you see the Dec 1 2015 article in Medscape? http://emedicine.medscape.com/article/200071-overview#a3

    Lots of good info. I see you're in the U.K. At the end of the Author line in the article click on thw blue word "more" and that gives you the names aand some location info on the authors. Your condition is rare, so they may be  willing to talk to you. If not, you should definitely see a hemotologist, since that's what 2 of the authors do. Good luck.

    • rearview
      rearview lindagkelly

      Posted

      Hi Linda thank you so much for your reply I will do as you suggested. i didn't see the article will take a look. Yes I can spell it I had to diagnose myself way before the doc's did. My Doc doesn't even know what it is. He thinks it is all in my mind. x
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