new to forum-a few questions

    • Anonymous
      June 14, 2010 at 11:38 pm

      I am 69 years old and was diagnosed 1 year ago w/CIDP after 2-3 years of symptoms not knowing why I was staggering and losing sensation in my legs:p . I receive IVIG every 3 weeks. Recently I am having difficulty w/ swallowing (feels like something in my throat all the time) and Neuro says it is not related to CIDP though ENT and Gastro says it is motility related. I am on Gabapentin 900 mg at nite and 600 during the day. I also have noticed in the past 2 months my hair is falling out. I have lost about 25 pounds recently, mostly because nothing tastes right and I don’t care if I eat or not. My strength is low the closer I get to getting another IVIG. The right foot is more numb and tingling than the left but as long as I stay on the Gabapentin I do not have the sharp piercing pain like a needle stabbing me in the legs. Question really is-does anyone else have the problem of hair loss, difficulty with throat and loss of taste? I do walk w/ a cane now as my loss of balance is much more pronounced. I look forward to hearing from you.

    • Anonymous
      June 15, 2010 at 1:12 am

      please read my thread “throat”. You are not alone several of us are having trouble with our throats!

      I am also on gabapentin. Without it the pain is unbearable!

      Rhonda from Canada

    • Anonymous
      June 15, 2010 at 9:38 am

      thank you Rhonda-I find that the Neurosurgeon I have been seeing does not want me to form any opinions and actually does not want me reading up on CIDP. I feel I need to get some answers. This seems to be a good place to feel out other people with the same problems. Have a good day.

    • Anonymous
      June 15, 2010 at 10:46 am

      I have a lot of problems with hair loss as well, and a lot of people on this forum have too. I think that when your body is in a constant state of autoimmune disorder, that is one of the symptoms. Not to mention that you lost a lot of weight and are not eating properly, that can affect it as well.
      I have a lot of eating and gastro issues as well and I think it is because your vagus nerve is affected that controls all of this. Mine go up and down. Sometimes it will be good, and other times, like the last 2-3 weeks, I have had no appetite and force myself to eat. I was diagnosed with “mild” GBS, but may have CIDP or something else that has not been diagnosed yet.

    • Anonymous
      June 15, 2010 at 11:38 am

      Back in April of 2002, the first morning I woke up unable to walk at all & had almost totally lost the use of my hands (I would remain this way for 2 1/2 years), I was also unable to eat. Everything, including water tasted like metal. I was threatened at Mayo with an IV for fluids & they tried to get me to drink Boost or Ensure. I lost about 25# in a matter of 6 weeks, then slowly my ability to eat again returned. I believe when I had that taste problem I was in my most acute phase of CIDP, be careful to watch out for more loss of function.

    • Anonymous
      June 15, 2010 at 6:47 pm

      Hello J Earls,
      Wellcome to the forum family. You are not alone. We all have hair loss. Mine fell out many times, have 5 wigs. Have to keep my hair very short. I Don’t want to be prideful about it anymore, will go bald everywhere. Most of us have difficulty swallowing at some time or another. Weight loss, some women gain weight even with no appetite. The balance will get worse. You mentioned your neurosurgeon, you need a neurologist & you most definately need to read all you can, & ask as many questions as possible. Read every post & blog on this site.

      Best of luck to you. My heart & prayers go out to you.

    • Anonymous
      June 15, 2010 at 11:12 pm

      Welcome to the family!
      You need to know that you are in chargeof your health. Read andlearn all you can. Also I had my thyroid removed (cancer) and now have a metal taste in my mouth. I was told by my ENT that it may be damage to the salery (spit) gland. Take action about your thyroid….

    • Anonymous
      June 16, 2010 at 7:46 pm

      I have tears in my eyes right now knowing there ARE people out there that understand where I am coming from. I feel so out of control sometimes with myself not knowing the whys and not knowing if anyone understands, particularly when I am reluctant to ask the Dr. anything anymore. I feel sometimes that I am the one a little nuts. But it is not nuts, when you are staggering, have loss of balance, you don’t feel parts your lower limbs, have loss of taste, trouble swallowing and loss of hair and now a new problem, a low heart rate. Give me a break. I know there are many people with a lot worse problems but I guess I had hoped for some answers from the Dr’s and I don’t seem able to get any reassurance of any of it. Thank you again.

    • Anonymous
      June 17, 2010 at 11:47 am

      I think I know how you feel, been there, I care. I pray for comfort & healing for you. The stagger, well it’s gonna get worse, may I suggest a rollator walker & if your Dr. orders it your insurance should pay for it. A rollator walker helps a lot more with the unsteady gait, than a plain one. Don’t know how it just does.
      Do feel free to vent, & ask any questions you can think of. We all care & most have been there. Hope is eternal. We all have hope.
      Peace & comfort to you. Love, smitty

    • Anonymous
      June 19, 2010 at 10:43 am

      Rollator walker, there was a write up about it in the magazine “Neurology Today” about how it helps with the gait.

    • Anonymous
      June 21, 2010 at 8:33 am

      You remind me of myself only three years ago when I found this site and at last felt I was not as crazy I thought. I have realized over these few years that the answers do not always come from the doctors. Though my neurologist and nurse practitioner are wonderful compassionate providers, they are limited in their knowledge of all that involves the having and treating of CIDP. I often have angst over what symptoms are related to this disease and when and if I should report them. Sometimes I just write them down and observe. If asked at my 4 month check up I will report symptoms but have stopped asking if [B][U]they[/U][/B] think it is the CIDP. I just assume they are attributed to that or to the medication to treat it and if it becomes disruptive to my life then I pursue answers and help for the problem. Part of the frustration of this diagnosis is the lack of in depth understanding of the details of the disease. We are the only experts really so using each other and our instincts becomes the best way to achieve some sort of control over how to manage this. By the way, I would encourage you to take your doctors advice regarding exploring information about this with a small grain of salt. You are entitled to do whatever you need to do to get a handle on this.
      Stay in touch and take care of yourself.

    • June 25, 2010 at 12:10 pm

      I’m new to the forum as well….please know that my thoughts and prayers are with you.

      I don’t know if it is possible in your case, but it sounds to me as if you need a new neurologist. I’ve received much support from mine, and our medical personnel are the best line of defense in any illness. They really do set the tone as far as our attitudes and recovery.

    • Anonymous
      July 12, 2010 at 6:44 pm

      Hello Necey,
      Welcome to your GBS/CIDP forum family. You are not alone. You are in my heart & in my prayers.
      Love, & gentle hugs, smitty

    • July 13, 2010 at 1:32 am

      CIDP is a rare disease and most doctors have never seen it in their lifetime.
      My neurologist with 33 years of experience was baffled, but he used all the resources at his command to diagnose me in a timely fashion.
      The quicker the nerves receive proper treatment, the less damage is done.
      I have learned from this forum that the right doctor is most important and many here have gone for 3 or more opinions before they were helped.
      I was just lucky.
      The best doctors are always open to a patient who seeks a second opinion.
      I write down my questions before I go to an appointment and even if the answer is maybe or I don’t know I can accept that. So many knowledgeable and caring people on this forum have helped me learn a lot and have suggested places to go for information.
      We are like snowflakes, because we can vary so much in our symptoms. Some do not respond well to the standard treatments either and need immulnosuppressant drugs or cytoxan. A combination of treatments may work better for some.
      Ask questions here and learn all you can. This disease is too serious to delay getting a second opinion or to not be getting proper treatment of the right kind or the right amount.
      Happy have you aboard and I will pray for your strength to return and your recovery to be a success.