Something happened with Emily…need advice

    • Anonymous
      December 14, 2007 at 10:00 am

      At about 9am today I got a call from Emily at school. She was crying & said that her legs were hurting her. I drove like a mad woman up to the school (took me 4 minutes to get there, it’s normally a 7-10 minute drive) and she was just fine. I gave her some Motrin – just in case.

      The school secretary said that Emily came in & said that her legs were hurting her. She wasn’t crying until she heard my voice. After getting off the phone with me she sat down, kind of pulled her arms up to her chest & said that her they were hurting her. She kept pulling her legs up towards her body as well and cried the whole time. The secretary said this lasted for about 3 minutes.

      When I got there she was perfectly fine. She said that her right arm was still hurting a little bit but that she wanted to return to class. I had her hop on each foot, sit down & stand up quickly, use both hands to grip my finger & she did 3 push ups perfectly. I asked if she was hurting like she did when everything was broken (that’s what we call it when she was at her worst) and she said it was different but couldn’t exactly explain it to me. But did say that her stomach hurt first then everything else starting hurting & she thought it was the stomach virus that is going around, however she doesn’t really have any other symptoms of that. She’s had a stuffy nose for a few days but that’s normal for us this time of year.

      WHAT is going on? Any clues? The only experience I have with that kind of pain was when her CIDP was first starting & we didn’t know what it was. Even once it was full blown her pains weren’t like that. Could this be nerve regeneration? Or am I just trying to be too optimistic?

      She’s been getting IVIG once every 2 weeks for the last 3 months & hasn’t had any problems. She had a treatment last Thursday & she’s scheduled to have another next Friday.

      Does this kind of pain sound familiar with anyone?


    • Anonymous
      December 14, 2007 at 11:51 am

      Kelly, on another thread some of us discussed leg pain. I was saying that I do get leg pain off and on without obvious reason. I suspect that my unnatural way of walking puts stress on the leg muscles. Could it be that this is what was going on with Emily?

    • December 14, 2007 at 1:27 pm

      Hi Kelly,
      I’ll call you!

    • Anonymous
      December 14, 2007 at 3:51 pm

      Norb – Emily was sitting down, on the carpet at school, when her leg pain started. She said that she had hurt her finger right before that & she needed a band-aid. I’m thinking that maybe she got herself so worked up over her finger that it caused the leg pains.

      She does get leg pains & back pains sometimes – just NEVER to this extreme. It really freaked out her teacher & the secretary.

      She’s home from school now & perfectly fine. She decided that she was going to walk backwards from the driveway & into the house – so I’d say she’s fine, LOL.

      Dawn – Thanks for calling. I’m going to call you now.


    • Anonymous
      December 15, 2007 at 12:07 am

      Glad to hear Emily is doing fine:)

    • Anonymous
      December 15, 2007 at 12:49 pm

      Hi Kelly,
      Sorry to hear about Emily and I don’t know if this helps at all but I too have been having just more than my usual bit of shooting leg and hand pain lately.
      I attributed it to the weather and holiday stress, you know extra rushing around and stuff. My hands are just not cooperating!! I hope Emily feels better tell her it’s okay to cry we all do!
      “Happy Holidays All”


    • Anonymous
      December 15, 2007 at 2:00 pm

      Hey Kelly,

      I think I mentioned to you before that Ben gets severe pain, spasms and cramping from his waist to his feet. He’s 40, and he cries too when it happens. He has GBS, but it was a severe case of GBS that nearly took his life, and he was diagnosed with post-GBS this past July. He takes Mirapex, which is a drug they use for Parkinson’s and Restless Leg Syndrome.

      Good luck to you guys!!!


    • Anonymous
      December 15, 2007 at 3:24 pm

      I have GBS but have never tool any medication for the shooting leg and hand pain. I got zings and zaps and muscle spasms and cramping. When I start the cramps I just make sure I eat more things that have Potasium in them and they would go away for days. I never took medications because all these kinds of pain are never there when the Doctor is there. I would try and explain them but did a poor job. I just told the Doctor if they get to be steady I would tell him.

      I do remember growing up having what they called growing pains where the muscles would just cramp too. They said it was growing pains that wispered that they were from the hormones changing. I don’t know if she is that age?

      I did see something in your message that did throw up a red flag. “Emily was sitting down, on the carpet at school, when her leg pain started. She said that she had hurt her finger right before that & she needed a band-aid.” Maybe she was in a position that made her leg fall asleep and when it started to come out of it that is when she felt the pain? Also cramps can start in muscles when you sit in a strange position. Also, kids have a habit of leaning back on their hands and putting a weird angle on their wrists. I also agree with the panic part “IT HURTS” and in school you can not just scream and rub your leg and call attention to yourself. I hope it never happens to her again. It is hard because kids want their Mom’s but are also embarrassed when they show up. Crying as soon as she heard your voice might of been just a stress release too! Glad you could drive over to her rescue! Next time pay attention to the speed limit. OH your lecture is over! Have a good holiday!

    • Anonymous
      December 16, 2007 at 7:57 am

      Hey Kelly,

      I hated to read that post. I know Emily has been doing so well and we all hope she continues.

      I have nothing to add to the question, just to send my love.

      If I don’t talk to you before Christmas, I hope you enjoy it in your new house.

      Love, Lori

    • Anonymous
      December 16, 2007 at 8:21 pm

      Hi Kelly,
      I have CIDP like Emily and also get the leg pain. It’s usually worse if I have been overdoing things the day before – eg: walking or even just standing too much. Also if I have been sitting on the floor – this is something I try to avoid – My legs are really stiff and sore, for a while after and it’s also really hard to get up! If I’m at home and have been sitting on the floor I usually ask a family member to help me get up! I also ache more when I have a virus. But then, a virus always makes my CIDP symptoms worst.
      I hope this helps.
      Best wishes,