13 year old daughter – no diagnosis yet…

    • Anonymous
      March 11, 2007 at 6:13 pm

      My daughter has been suffering from periodic numb feet since September 2006. She has seen two neurologists, a psychiatrist (on the neuros’ recommendation), had four emergency room visits and been hospitalised overnight with no sensation in her right arm and the right side of her face.

      We are now seeing a chiropractor/kineseologist to at least get some holistic help. She does not fit the box so according to most of the medical practitioners we have seen it must be in her head:mad: (even when she has no sensation or coordination her reflexes are still intact.) She has had a brain MRI which was clear (thankfully) and nerve conduction tests. The nerve tests were done within a few days of onset which I have since been told is next to useless as the damage has not been done yet. On her hospital admittance another was not done because ‘the first one was OK’. She is booked in for a spinal cord MRI tomorrow and to see a paediatric neuro interstate next month.

      Aside from the worry and frustration of an ongoing illness the pain and fatigue is more of an issue for our family at the moment. Thankfully her school is being incredibly helpful, posting her work on the school email system. The only reason she has been prescribed neurontin was because I asked for it after reading that it provided some relief for the painful joints, and muscle cramps and spasms on this site. OTC analgesics were not working and she was exhausted from both dealing with the pain and not being able to sleep from it. I (and the paed-psych) feel this chronic pain is the only mental health issue/stressor she has to deal with. The 300mg per day dose was only prescribed when I acknowledged that no definitive diagnosis had been reached and that it was only a trial.:o

      I have found your posts to be a great source of information and an inspiration to keep fighting for my child. Thanks and keep up the good work!


    • Anonymous
      March 11, 2007 at 8:08 pm

      Glad you found us! Sorry to hear about your daughter’s troubles. Hope you get some answers very soon!!

    • Anonymous
      March 12, 2007 at 6:50 am

      hi jo & welcome,

      this periodic numbness could be gbs, but does not fit the more normal patterns. a ncv does not need time to be correct, however there are some gbsers who show no damage. the pain is prolly real. regardless the of eventual Dx, the pain must be dealt w now. 300 mg of neurontin is not even close to the right amount. 900 is the minimum. it is for neurological pain only. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      March 12, 2007 at 8:20 am

      Sorry to hear about your 13 year old daughter. Thank you for joining our conversation and sharing your experience.
      GBS is indeed different for each person. There are a set of so called “Classic symptoms” yet many do not fit those classic symptoms and do in fact have GBS as a final dx. Much success in finding some sort of help with you daughters condition.

    • Anonymous
      March 12, 2007 at 3:14 pm

      so sorry to hear about all your troubles. I know how frustrating it can be. especially when no one will seem to listen I seen eight doctors before I got the right two nueros together. they finall listened and finally after i got really sick and hospitalized for a month and transfered to an out of state hospital they finally started to make real progress. I am able to cope and live with my CIDP and have a direct line to my nuero 3 hours away from my home who takes phone calls for free and helps me along the way. Hang in there and never give up.

    • Anonymous
      March 12, 2007 at 7:27 pm

      Hi Jo,

      Sorry to hear about your daughter’s health problems.

      As others here have said, one thing that makes GBS so difficult, is that it can present in many non- standard ways. This often confuses the doctors and delays the dx.

      A note about EMG tests. I have GBS and my first EMG (done 10 days after onset was also “normal”). My next EMG, done by another neuro, was profoundly abnormal.

      When I questioned the 2nd neuro about the difference in results between 1st & 2nd test, he told me that these tests are somewhat subjective -results can be affected by the doctor doing the test.

      In my own case, for example, I had patchy areas of numbness and weakness. The 1st neuro who did my first EMG only tested places on my arms and legs that had no symptoms. The 2nd neuro was paying attention to where my symptoms were occuring, and tested accordingly.

      FYI, sometimes the spinal tap can come back normal, but you can still have GBS. This also happened to me and confused the dx.

      I feel so sorry for your daughter with her chronic pain problem. She really does need some relief. Unchecked pain can be a health issue by itself, and affects everything else in her life.

      Keep being such a good an advocate for your daughter – you know her like no doctor can. It’s so very important that you believe her.

      Best wishes,


    • Anonymous
      March 13, 2007 at 8:37 pm

      Hi, I too am thinking of you. My 11 yr old had normal/inconclusive tests but very definite acute onset following flu with very suggestive gbs symptoms (can’t walk– aside from about 25 ft w/ a walker, VERY slowly, can’t lift her feet, just drags them…after that, she’s totally beat) and fatigue. GBS is her preliminary dx, and one neuro doctor ventured it was axonal (then backed off when, after reading here, I asked how he arrived at that w/out EMG to confirm)>

      When she was in the hospital at the start of all this, I was glad when the tests came back okay (and still am about most of them!), but it is frustrating/scary to think no one really can figure out what is going on. Her neuro and primary both believe the symptoms are real, but another doc that I contacted about her lingering symptoms suggested she was ‘faking it’, since her tests indicated should be all recovered. Grrr. I agree, it is important to believe your child. Otherwise, they will feel so alone! I know her and can see she really wants to be well and wishes more than anything to walk and be back to normal. She hates being stared at. Going back to school in a wheelchair this week (part days for now) has been both hard and good. Hard because all her friends want to know why she can’t walk, and people stare, and good because life is getting a little more normal.

      I am sorry you and your daughter are going through the same kind of turmoil.
      Hang in there.

    • Anonymous
      March 14, 2007 at 11:54 am

      Hello Jo

      I am so sorry about all the things you and your daughter are going through .
      I know how you feel …we are going through the same worries and frastration ..hang in there .

      Best wishes


    • Anonymous
      March 15, 2007 at 5:59 pm

      I feel your pain. We have an almost 3 year old with CIDP. It took over 1 year to get a correct dx. We heard it all.

      Please know that we are praying for you. At night, my husband, our 3 children and I pray before bedtime and we always pray for “ppl. with Dell’s disease”. It is very hard but I guess it gets a little easier, over time. You get used to things being this way.

      Hope you find out some good news soon.


    • Anonymous
      March 15, 2007 at 6:29 pm

      The initial diagnosis from the first neuro she saw was “a mild form of GBS” as she had a viral illness with high temps and joint pain two weeks before all this started.

      It was only after she had a return of more severe symptoms (arm, face, acute pain when feeling returned etc) and we sought help at the hospital (as told to) that the different diagnoses started. The first ER doctor told us that it couldn’t possibly be GBS as only her sensory nerves were effected :confused: She was tired from having the flu and just needed rest. The second one said that he has tricked her into telling the truth when touching her foot/leg with (blunt) scissor points.1 point -2 points. This is despite the fact that she was incorrect over half the time even where she could feel it and I could see her leg bouncing around from the force. 😡 Of course she knew when he was touching her when she could feel her knee moving! The third said it was definitely physiological due to the pattern of numbness in her face and admitted her for the night. Her boss (the original neuro) had decided to listen to the second ER doctor plus her atypical symptoms and over-ruled her. 😮 He did not even come in to see M. despite her total loss of sensation from shoulder to finger tip and the right side of her face.

      He later told us in his office when we disputed his assertion that it was all psychological that there was a ‘definitive test’ (something about sending a magnetic stream down the nerve path?) that could be done. When we asked why this hadn’t already been done he responded that she had to be symptomatic at the time. She had been numb for 5 days, he didn’t come to the hospital AND this was the first time in over two months, and several episodes, that this had been mentioned. After I asked him why we had never been told of this before he stood up, opened the door and ushered us out! $110 thank you very much! We now have a new neuro.

      I often wonder if she would be getting the same treatment from the doctors if she was a 45 year old man. What do others think?

    • Anonymous
      March 23, 2007 at 2:07 pm

      Thats a bunch of bs and your right I bet if it were a 45 yr old man it would be different. Well I wish you all the best of luck. What type of tests for gbs have been done? Its pretty amazing that drs want to tell you how you feel and the syptoms your feeling are all in your head. Give them H—and get the answer you want and deserve.