Neuropathically Yours,


According to Medline Plus is:

Peripheral neuropathy is a problem with the nerves that carry information to and from the brain and spinal cord to the rest of the body. This can produce pain, loss of sensation, and an inability to control muscles.

  • “Peripheral” means nerves further out from the center of the body, distant from the brain and spinal cord (which are called the central nervous system).
  • “Neuro” means nerves.
  • “Pathy” means abnormal.

Sounds cut and dried, bland, benign; if that’s the case then why the HELL is it so hard to treat? From a medical standpoint I totally understand the concept of ‘adjuvant agents’ and things that are ‘sposed to help. However, I want the problem to GO AWAY and that seems to NOT be possible.  I have so many friends struggling with neuropathic issues–Jo, Cindi & a ton of others–wish I were so tough.  I’m not hangin’ with it very well.

I went to the doctor Friday and got a going-over plus a slip to have labs drawn.  Tons of ’em.  You know how it goes…bleed’em dry!  I’m hoping something shows up that can be corrected. I’m tired to the bone with mystery symptoms….

For a while I’ve been having cold, tingling neuropathy from the knees down and the elbows down, plus creepy-crawly sensations on my thighs & torso.  I have areas of numbness on my feet & back and when I go to bed it feels like I’m being stuck with a straight pin.  Let’s just say it wakes me up–FAST. I can’t feel water when it hits my face & I’m having bladder issues–hesitancy & retention. My arms get ‘tired’ bilaterally when I’m brushing my teeth and I have to switch hands; my jaw muscle get tighter & tighter as the day progresses.  I’m not clenching or grinding my teeth; it’s like they’re being wound tight with a key.  Weird & disconcerting.

I’ve ruled out the obvious suspects such as most of my medications so it’s time to try to find the cause.  Since before my Crohn’s diagnosis I’ve had burning neuropathic pain in my feet and some loss of temperature sensation, but it has gotten so much worse, with the right side being more affected than the left.  Recently I had a really grossly infected toe & didn’t realize it until it was BAD.  Didn’t feel it…That gave me the creeps. I see people lose feet/toes all the time because of situations like that.  Words of wisdom??

ALWAYS CHECK YOUR FEET, even if you think you don’t need to.


9 Comments (+add yours?)

  1. Kathy
    Apr 20, 2011 @ 14:45:01

    Just reading this now. How is the B12 level? Also weird shit happens during peri-menopause and menopause, like the creepy crawly sensations (known as formication–not to be confused with fornication;))


    • Autoimmune Maven
      Apr 21, 2011 @ 07:46:57

      Hi Kathy, the B-12 was lower. Go back to the Dr tomorrow. He’s considering discontinuing my methotrexate instead of adding B-12, since he thinks it may be contributing to the problem. When I had my yearly check-up my hormones were fine and I have a mirena IUD which contains hormones but I am teetering on the edge of the hormonal cliff….. I’m gonna use the formication versus fornication thing at work today!! You always make me smile…Thanks!


  2. Autoimmune Maven
    Apr 18, 2011 @ 10:26:08

    Thanks chick! Hope to have most of the results by Wednesday. I may be able to pick them up this evening if I get my butt in gear. Thanks for the encouragement!


  3. hibernationnow
    Apr 18, 2011 @ 10:02:50

    Sheila, it’s horrible to feel so out of control and helpless. i know that well. when do you get the results back? that’s always the hardest part for me. you know all your friends are here if you want to talk. anytime. I hope everything is ok and that you find relief for your symptoms fast ( i know, I know, it’s never fast). good luck!


  4. phylor
    Apr 18, 2011 @ 07:45:17

    Mom’s feet issues were caused by drug-based neuropathy and a stroke (first, then the drugs) which is why I thought of drug reaction first.
    I do hope it’s something simple, or easy to deal with, and not a new diagnosis such as MS. I’ll keep my fingers crossed! Sending you gentle (((((hugs))))) while you wait for the lab results and beyond.


  5. phylor
    Apr 18, 2011 @ 07:20:22

    I’m with mo: I hope the blood loss helps the dr formulate an answer as to why you’ve been having those frightening and horrific symptoms! I thought of reactions to medications, but if you’ve counted those out, then blood loss might be the key.
    I’ve heard, too, of folks having feet issues, and not knowing about it! Happened to my mother — so I’m always checking my toes, even though they are more apt to hurt than to be numb. So, that’s great words of wisdom!


    • Autoimmune Maven
      Apr 18, 2011 @ 07:34:53

      Thanks for reading my ramblings! I’m hoping to figure it out and NOT get a new diagnosis in the process. I don’t want any new labels, that’s for sure! I always associate this type of neuropathy with diabetes, which I don’t even remotely have. My MD was perplexed and is hoping it is something simple and NOT MS. Just the thought sucks…Thanks for being here to both you and Mo!!


  6. mo
    Apr 17, 2011 @ 23:50:00

    Sheila, The pain you describe sounds horrible! Hope after they bleed you dry the doc can come up with something for you.
    Take care.


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