January 24, 2010 at 8:17 pm
I had GBS in 2004, severe case. Now diagnosed with CIDP in October of legs, hands, and feet. Still having GI problems after having Gall Bladder out last March, continual burning in sternum area especially after eating feels like someone lit a match. Haven’t been able to work since last May. Getting IVIG treatments every six weeks for CIDP (3 sets) since Nov. Getting some strength back and gaining some weight back finally but this continual burning in my abdomen as well as burning in my face (no redness) is tiring. I’m 51 years old and can deal with tiredness and the tingling residuals in legs, hands but the face and gut just are so draining. Do we get neuropathy in our guts especially after having surgery. I read somewhere that surgery after GBS is difficult but OK it’s been almost a year now. I’m on four medications Aciphex, Neurotin, Paxil and Ambien. Anyway just had to share.
AnonymousJanuary 25, 2010 at 12:50 am
thats funny you mentioned this because I went to see a GI guy and asked him if I could have porphyria and he said have you had any surgeries and I said “no why” and he said “because porphyrics tend have surgeries like gall bladder becasue they are in such exruciating pain.” i said “well I did go to the hospital three days in a row 2xs fearing for the safty of my organs and then the third time because my legs were going lame.” while in the hospital the back pain became so excutiating I had to piggy back 4 mgs of morphine, 10 mgs of perc and tordol. I started asking for a shot of morphine before I ate because eating made the pain worse. my primary care just decided to remind me recently that stomach pain can radiate. the funny thing is that I thought the pain was my kidneys radiating to my stomach and really it was my stomach radiating into my back. The GI said “well then why hasnt anyone ever done more than take ultra sounds of you?” and I said “because they accused me of drug seeking and hysteria”. My dad has had his gall bladder removed I guess the doctors were listening to him. he still gets stomch pain dispite the surgery as well.
anyhow now I have a jug of urine in my refrigorator. I was instructed to pee in it for 24 hours and then turn it into the lab. My dads doctor is having him do the same. it turns out that he was paralyzed last year after having pneumonia.
AnonymousJanuary 25, 2010 at 7:45 am
Have you mentioned it to Dr Sullivan? You should ask him the next time you see him if CIDP could have anything to do with it? or ask the doctor who did your gall bladder surgery if removing the gall bladder could have anything to do with the burning. he might be able to give you meds for it. I had my gall bladder out years ago but I do not get burning. I HAVe other issues… like bile dumping.
anyways we need to set up a meeting or something so we can meet. YOu live so close and you and Ryan see the same neuro in GR so it would be nice to meet.
let me know if that is something you would be interested in.
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