Treatment for sensory + balance?

    • Anonymous
      November 29, 2008 at 11:38 pm

      Hi peoples! I’m back again with more questions. I have CIDP (9 years now) with motor and sensory symptoms. This latest relapse that started last July, my neurologist says that it’s mainly sensory problems. My right foot is very numb now. I can only bend the toes on that foot a little bit. My fingers are more numb than usual and my legs are weak. My balance is absolutely horrible. I’ve been falling alot. Last year the prednisone didn’t work but the IVIG did. I had IVIG Sept., Oct., and Nov. of this year (3 days a month, 40 grams a day) and it’s not helping at all this time. A few days after the last infusion I feel a little bit of a boost and then it’s gone. I’m slowly getting worse week by week. I’m going to see my neuro on Dec. 4. My questions are: What sort of treatment should I ask for to help the sensory and balance specifically? Would immunosuppresants help? Are immunosuppresants chemo? Any specific drug I should ask for? All help is always appreciated.

    • Anonymous
      November 30, 2008 at 8:12 am

      hi Jersey,
      I think of treatment as a whole, not just inmunosupresant medicines.
      Take on count physioterphy, psichoteraphy, natural suplements like Omega-3, vitamins.
      Everybody in this group is on ivig, and I do no know if they do physio or other
      alternative treatments, it seems that not.
      I myself have been no on inmunosupresant for months, just neurotin for pain,
      antidepressants and multivitamins. I agreed with my neuro no to start inmunosupressant
      treatment (sulfasalazine) until my auto antibody ELISA count get to 15.000.
      I hope you agree with me and start to fighting with other weapons…not just relay 100% on drugs.
      Best regards,
      Pablo, Uruguay,

    • Anonymous
      November 30, 2008 at 8:58 am

      HI Jersey,
      I think your issue is one that many of us face. In order to get better it has to be a whole package sort of done at the same time. One thing isn’t going to cure everything. Its not just drugs or therapy, its a package deal. With that said, during my therapy days my PT’s kept telling me if you don’t ask your body for it you will never get it back. They would tell me to ask my body for balance, in other words practice at it. Whether its just standing at the counter (holding on of course!) and closing you eyes. I had a pillow type thing that I would stand on while I washed my hands or dishes at the sink. It would force my body to balance and I do believe it helped. (Uneven soft surface forced balance) Going along with the “ask the body for it” concept a fun way is using the Wii fit video game. It has balance games that force you to shift your weight which in turn strengthens your ankles and feet. I’m sure there are other ways, this is one that I like.

    • Anonymous
      November 30, 2008 at 10:32 am

      Jersey Shore::)

      I think the other guys/gals nailed it. Getting Better involves all aspects mentally, physically, and spiritually.. There are a wide variety of treatments you and your neuro. can pursue, and seems like everyone responds differently.. I responded well to ivig, and currently taking a pulse steroid prescription.. But, I’ve heard that over time ivig tends to be less effective for patients (I don’t know)…Hope to be weaning off both, on followup in Dec..
      Hope all goes well…..Deanop

    • Anonymous
      November 30, 2008 at 1:46 pm

      Hi Jersey, How about ivig with roids? That might give you the burst you need to jump start a remission. I do pulse roids for my relapses, been frequent lately. I also use neurontin and other meds for other problems. You want to stop the progression of damage so the body can regenerate the damaged areas. Exercise is also important, not too much and not too little. Rest when you can. If ivig doesn’t do the trick there is pp, 70% success rate, for both treatments individually. I can’t do ivig so not sure on amounts or frequency. Take care.

    • Anonymous
      December 4, 2008 at 10:33 am

      Jersey Shore,

      Whatever you can do to keep what you have is so important. CIDP takes and takes from us. We need to work as hard and as hard against it as we can. If we sit still and let it take from us, it most surely will.

      I am sure that you already have some kind of exercise program in place, however modest. Mine is modest, but helpful. One thing I added to mine was some balance work. As I lost foot feeling and balance through my feet, I tried to work my calf, shin, and thighs to help with balance.

      The feet do so well because they can feel subtle changes through the toes, etc. But we lose that connection, and our balance suffers. So, try this….

      While holding a rail or something ( so you don’t fall), spread your feet apart, but less than shoulder width. This should put you a little Top-Heavy and wobbly. Move your weight slightly to the right and use your shin and calf muscles to move you back to center. Then repeat to the left. Then move front. Try to feel your calf and shin muscles controlling the movement.

      Remember… Weebles wobble, but they don’t fall down. That is what you practice, wobbling left, right, and forward, trying to correct your balance with your lower leg muscles instead of your feet. Keep trying, it will help. It helped me.

      Good luck

      Dick S