Slow onset symptoms

    • Anonymous
      May 17, 2006 at 2:45 pm

      I was curious for those of you who had a slow onset if weight loss was one of your symptoms?

    • Anonymous
      May 17, 2006 at 3:18 pm


      Define slow onset, and do you mean weight loss before anyone hits the hospital? Weight loss after, is quite common.

    • Anonymous
      May 17, 2006 at 3:19 pm

      My symptoms began in Oct and were still continuing in Dec when I was finally diagnosed. Weight loss was one of my symptoms and over the last 2 weeks – prior to diagnosis and treatment – I think I lost ~15 pounds .

    • Anonymous
      May 17, 2006 at 6:03 pm


      i had slo onset & weight loss was not a symptom. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 17, 2006 at 6:43 pm

      [QUOTE]My symptoms began in Oct and were still continuing in Dec when I was finally diagnosed.[/QUOTE] This would be an onset of at least 6-8 weeks, which would be unusual for GBS. Do you know the cause of your GBS and can you tell us more? Thank you.

      Best regards.


    • Anonymous
      May 17, 2006 at 8:47 pm

      Not sure if this is what your looking for but I had rapid onset and pretty rapid weight loss.

    • Anonymous
      May 17, 2006 at 10:15 pm

      quilck onset and very little if any weight loss. Infact I complained about swelling in my feet and hands and arms and the eye doctor found swelling of the optic nerve right before my onset. About a week before I noticed swelling in the eye and thought I had pink eye and had a discharge that went away slowly.

    • Anonymous
      May 18, 2006 at 12:09 pm

      I had a very slow onset

      I first develope this in April of 2005, three weeks before I felt real fatigue, tight muscles, etc. I laid down one day to take an nap and woke up with double vision, through out the last year and the first 3 months on the onset of my GBS/CIDP I was 139 lbs. and went down to 110 lbs. My weight has been up and down ever since. When I get a set back from other problems my body does not like my weight seems to drop. I recently had 3 kideystone due to all the medication I was on, and lost 11 lbs because of being sick from that. The best thing the Doctors every gave me for appetite and weight gain was megase 400ML it is really great it increases your appetite tremendously. I also take protein shakes, ensure and any thing that makes you gain weight.

      I hope this helps.

    • Anonymous
      May 18, 2006 at 12:50 pm


      Come to think of it, Kit mentioning swelling jogged my memory. Although I had no appetite and wasn’t eating, I didn’t notice any weight loss but felt swollen. I recall feeling as if I was retaining fluids.

    • Anonymous
      May 18, 2006 at 10:53 pm

      I lost about 20 lbs during the 2wks before i went to the hospital and about 20lbs after being admitted for 1 month, but i had also just had a baby. I think that some of the weight loss was conected to the GBS.

    • Anonymous
      May 21, 2006 at 11:03 pm

      I had a slow onset.
      (My numbness moved “up” about a half an inch a day in both hands and both feet)
      It took about 4-5 weeks before I was correctly diagnosed, and put on IVIG.

      I did not notice much weight loss while it was occurring.

      However, I lost a LOT of muscle.
      A LOT.


    • Anonymous
      May 22, 2006 at 10:26 pm

      I had a quick onset. I lost about 17 pounds in 2 weeks in the hospital. I am out now but I have not lost or gained any more weight.

    • Anonymous
      May 23, 2006 at 12:10 pm

      I had slow onset. Started with numbness etc in left arm and slowly spread to right arm then legs, with other symptoms slowly being added. It took over 6 months to dx. I lost over 20 lbs. And I can usually tell when I am about to have a set back because I lose about 5 pounds right before I relapse. Then gain it back later.


    • Anonymous
      May 24, 2006 at 10:19 am


      As usual, my case is different. I had a slow onset of my symptoms, however, I gained weight. I couldn’t move very well or cook–couldn’t even cut vegetables because I could barely hold a knife. I just seemed to hack at the food until it was in cookable pieces, throw it in a big pot, and let it simmer. My elbow kept bending and I found food a source of comfort. With the lack of exercise and an unbelieveable amount of solitude, I gained weight. This year I have lost 20 pounds by walking every day and trying to curb my diet — however….I love food. Darn!!! :confused:

    • May 27, 2007 at 10:10 am

      I lost around 40 pound, I lost all apertide and all food was like metal, and I drink lot of water it was the only thing I feelt good to drink.. and not cold water. this lost was on 2 months that I was at the hospital, and then more went when I started the rehab, but now my weight is stedy, but I hope I loose more 🙂

    • Anonymous
      May 27, 2007 at 11:19 am

      I took me about two weeks from symptom onset to diagnosis. In that time I lost close to 20 pounds. I started out 155 lbs and by the time I was dx I weighed 136. I had no appetite, had a horrible metallic taste in my mouth and if I did try to put food in my mouth, it felt like electric metal was shooting through my mouth. I could taste nothing except the metallic flavor. And if I forced myself to eat in spite of the appetite loss, I would vomit. I lived on nothing but water for a while. Feeling hungry soon after I started the IVIg was one of the first signs that my condition was improving.

    • Anonymous
      May 27, 2007 at 4:53 pm

      I had / have a very slow onset of CIDP. It took over three years from the first time in noticed a discoloration in my lower legs for numbs to advance slowly to the point that they seriously tried to figure out what was wrong. The nerve biopsy showed deterioration. The spinal tape showed elevated protein levels. Unfortunately my weight increased than stabilized [well over were I should be. So either I’m over weight or under tall] 😉

      IVIg seems to be slowing things down some. My hands are now effected. Again things are progressing very slowly, but the weight seems to be stabilized.

    • Anonymous
      May 27, 2007 at 5:40 pm

      [QUOTE=smallblockfuelie]I was curious for those of you who had a slow onset if weight loss was one of your symptoms?[/QUOTE]

      I seem to be slow onset. Heck the neurologist isn’t willing to swear I have MF but I have the GQ1B antibody. Diplopia developed first. Maybe first brief incident in late 1999, consistent by 2003 (not noticed until 2003 for sure). Walking problems 2004. I’m close to where I was in 2004, but while I have had fatigue, I’ve not had weight loss.