Can’t stand it!!

    • January 29, 2007 at 7:54 pm

      I can’t stand it. My gums, and tongue feel like I have the entire thing on the positive and negetive of a 9V battery stuck to it.

      Is this a symptom of MF GBS? I had these feelings back in Nov. and was put on a LOA, rested lots, cut back and things got better.

      Now here I am again end Jan and I can’t stand it any more. I also am so tired. Saw my Neuro last week and she said something about CIDP.

      Can you have CIDP with MF Varient? My protein was normal in my spinal fluid in Nov. Is the protein elevated with CIDP? (Initially I had MF with GBS.)
      She wants me to increase my neurontin and wants me to take medrol dose pack.

      I tried to increase the neurontin the other night and I couldn’t function the next morning. I felt hung over and out of it.

      I feel like I am crazy having all these symptoms. If anyone has any insight to this I would love to hear what you have to say.


    • Anonymous
      January 29, 2007 at 8:33 pm

      hi schel,

      odds are you are suffering from your residuals, another mf/gbs attack, or cidp [chronic mf/gbs]. i’ll place my $ on the residuals. you should do what you did last time to alleviate the battery-in-the-mouth thing, ie. all that rest. if you are having another gbs attack or have cidp, your protein count will be over 55 in your csf. keep us posted on this thread. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 29, 2007 at 10:56 pm

      Hi Schel I have CIDP and my protein count was normal.


    • Anonymous
      February 3, 2007 at 5:47 pm

      My daughter, Emily (now 5 years old) has CIDP with Miller Fisher. She was originally dx’d with GBS/MF Dec 05.

      She had a repeat spinal in November & her protein was normal but she still has inflammation along her spine.

      So yes it is possible to have CIDP w/MF and it’s possible to have normal protein in your spinal fluid & have CIDP.

      You should do what you did last time this happened & see if it helps again. Recovery is slow – just try to take it easy.


    • June 22, 2007 at 9:37 am

      Hi everyone.
      Last visit with the neuro, and then she left the clinic…. ๐Ÿ˜ก so now I am left with looking for another doc, she said MFV/ with possible CIDP. So…. I did well after my leave up until today and now, I am at home agiain for overdoing it. ๐Ÿ™ ๐Ÿ˜ก When am I going to learn?

      I am back in the saddle again of this icky disease. I volunteered to take on more at work to just “help out” for a “month” and they took advantage of it and scheduled me for 2 months like this. I havn’t even made it a month yet and had to call in today because of the symptoms. Droopy face, fatigue, pins and needles all over, feel like I have a 9volt battery charging constantly in my mouth, I drip food all the time out of my mouth. I met with my supervisor this week and told her it would not work out to keep going at this rate and she said “well you told me you would cover!” I told her I would, however I could not predict that I would start feeling this way again. IN ONE EAR AND OUT THE OTHER….. So she calls me back after leaving a message about my symptoms and that I can not push myself another day like this for fear of ending up really ill again and in the hospital and she says “Well Julie doesn’t feel well either! I am scrambling to figure out what to do.” Like I am going to say “oh I’ll try to come in and see how it goes.” Sorry lady, I havn’t called in once yet since being out on my leave last November and your not going to guilt me into risking my health at this time!!!!

      Thanks for letting me vent! I feel much less guilty for staying home to rest today for overdoing it and thinking I can when I know I shouldn’t have. Only one to pay is me and my family. When am I going to learn?


    • Anonymous
      June 22, 2007 at 1:28 pm

      Schel> You should not get stressed or over worked you have to listen to your body! So vent all you want that relieves stress too! We all have been there at one time or another and we look well on the outside it is hard to tell that we are even ill. My family has just learned to listen to me about how I feel. Friends have a hard time dealing with my fatigue. They don’t understand how one minute I am happy and have lots of energy and the next I am not tired I am exhausted and have to go sit down. I can not do the things like we used to so. “Shop till I drop” does not take me very long at all. Forget the mall! One store and lunch and I am ready to come home! You know we will be there for you! Don’t feel bad about venting…remember it is a stress reducer! ๐Ÿ˜€

    • June 22, 2007 at 1:45 pm

      Chel, I think Dr. Parry is at the Univ of Minn. Maybe you can get in to see him? Good luck! Dawn Kevies mom ๐Ÿ˜ฎ

    • Anonymous
      June 22, 2007 at 6:43 pm

      I also had MF varient and I have residuals. If I get under a lot of stress or get tired, my mouth gets the same way. I end up having to just eat ice cream until I have rested enough and it goes away. It is bad.

    • June 23, 2007 at 8:10 am

      Thanks guys.
      Schel ๐Ÿ™‚