going to the doctor

    • Anonymous
      October 17, 2006 at 3:26 pm

      can anyone help me with some questions.have five days of ivig with no relief of symptoms

      Fatigue. my doctor says that it is normal, Normal means ok to sleep most of the day and unable to do more than two hours house work. what works for everyone here?

      concetration I am unable to concenrate for very long. for example I needed a light bulb went into the other room to get it, I began doing other house work went back to the room without light DUH and turned around to get the light bulb and went off into my own little world and still no lightbulb this went on for a while I feel so stupid because of this.

      muscle weakness,joint pain and weakness,stress, headaches.severe pain in hands,wrists legs, nuerotin did not work for me.

      on the top middle part of my head once in a while feels like it is sunburned and hair seems to be falling out lots left in sink shower etc.

      get a stomach pain that hurts right in the middle under my ribs. it gets hard and I feel like am full.not a constant seems to be no rhyme or reason..

      and suggestions or help would be greatly appericiated my doctor is very good at listening and helping to find out what is good. I would appericiate any help so we can do the next step

    • Anonymous
      October 17, 2006 at 11:15 pm

      I have had GBS, not CIDP (at least not yet anyways – crossing fingers on that still). Anyways, I guess this is where everyone says its different. After my onset I was hospitalized and unable to walk, situp, rollover, feed myself, etc within a couple of days. IVIG didnt work for me in fact my paralysis set in after I completed the course of IVIG and ended up getting Plasma Exchange.

      Anyways, I am 3 months post GBS onset and I still fatigue easy. I cant even do two hours of house work. If I can do 15 minutes I’m lucky unless I take frequent rest breaks. I guess its all a basis for comparison as to how you were before and how you are now. Has IVIG worked in the past? IVIG works quickly for some people and they start to feel better over the course and others are just happy to stabilize after the course of treatment so it all depends. I would talk to your neuro about your concerns but if you arent getting worse at least thats a plus.

    • Anonymous
      October 18, 2006 at 3:15 pm

      Ask your doctor to check for paraproteins. If he finds any (IgG, IgM etc.), don’t let it scare you, even if it’s a cancerous condition, because the kind of neuropathy you get from having too much paraprotein is easier to cure than CIDP in many cases, and the cancer is not aggressive.

      Good luck

    • Anonymous
      October 18, 2006 at 7:37 pm