a second spinal tap ?

    • Anonymous
      August 22, 2007 at 8:15 am

      Hello everyone.

      I was wondering…I’m doing ok for the most part. My symptoms for some reason have seemed to have stopped progressing. I have, at times, extreme weakness in that my legs feel like they are 500lbs each. This morning, my hands and my hip sockets hurt. I still have the slight drop foot but am able to wiggle my toes a little more than I could before. I still cant spread them and on the first foot that was affected, the last three are starting to curl.
      But, overall, I am doing ok.

      My nuero basically released me saying we were going to do a watch and see thing b/c he thought maybe the CIDP had burned itself out and I am stuck with the numb feet and such. Would this mean remission ?

      Will I ever have to do another spinal tap ? How do they know what your protein level is doing if they dont do one ?
      THe one I had was horribley painful and I never want to do it again…but, just curious.

      I have an amount of stress in my life right now that I have no idea how I am even handling it. I’m sure my weakness stems from that. I dont need to call the dr though, right ?

      Have a great day everyone.


    • Anonymous
      August 22, 2007 at 11:35 am

      Hi Stacey,

      Hearing about how much anxiety is in your life sounds so familiar — you should seriously consider antidepressants. AD’s have helped me enormously. They don’t make the stressful things in your life disappear, but they do stop the worst of the physical reactions to that stress.

      I, too, am in remission. I chose to stop IVIG in December to see what would happen. Eight months later, I checked in with my neurologist and he decided to skip additional tests to “prove” that the condition was in remission (I wouldn’t have done them, regardless) and basically directed me to go on and have a good life, but to call him immediately if things regress.

      I enrolled with a very good local physical therapist, and she is slooooowly weaning me back into a conditioning program. My second session was today, and my daily assignments include stretching, balancing and core stregthening exercises. She is proceding as if I have MS in order to prevent a flare. I feel great that I’m moving in the right direction.

      Best wishes to you!

    • Anonymous
      August 23, 2007 at 2:53 am

      Pardon my input or should I say, “excuse me, I’m talking” but your symptoms and condition sound VERY familiar to what’s been going on with me for some time. Cymbalta took the edge off for a short while, that is until the UGLY side effects far outweighed the little benefit I reaped from it. I’ll just say I broke through the floor and hit rock bottom again while on the meds. I just stopped taking it… Not a good idea. Not to say it or something else may work fine for you. Everyone’s different. I currently take no scripts and just try and deal with the depression and pain the best I can. I know what may very well pull me from the depths since I’m experiencing a little slice now and again. I just need to have that feeling stick with me, with more frequency for a longer duration.
      You weakness is most likely residual from the demyelination and resultant muscle atrophy, as is mine. Stress and anxiety could very well exacerbate your/our condition. As I’m sure you’re aware, depression is a real strength sapper. I doubt my cryptic babble has offered up much help. I suppose my manner of speech may very well be indicative of my being somewhat of a private sort. Open forums are a great way to share information but some things can be better conveyed more openly in more private a venue… Or somethin’.

    • Anonymous
      August 23, 2007 at 9:28 am

      are there any antidepressants that dont cause sleepiness ? I cant stay awake and focused half the time as it is.