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[QUOTE=long journey]Angela, Thank you. But doesn't Gulliane Barr Syndrom always start out with paralysis? Is CIDP always Gulliane Barr? I have no numbing, (slight sometimes) but the burning pain seems to spread further and get hotter with each episode. I used to have as much as a year or two between episodes, now I'm not getting much remission at all and the pain/sickness is awful. My spine burns, shoulders and hips & down the extremeties. Does this really sound like CIDP? Fatigue is horrible beyond words.[/QUOTE]

CIDP is the chronic form of Guillain Barre and you don't have to have GBS to get CIDP. I am recovering from GBS, it comes on fast and strong. It does not always lead to paralysis but can if not diagnosed properly and treated immediately. CIDP comes on slowly. It has many varying symptoms that can come and go, this is part of the reason it is misdiagnosed so often. I know people who went up to 10 yrs before a proper diagnoses. Have you had a lumbar puncture done to test your protein levels in the spinal fluid? I would recommend having this done. Anything over 45 indicates active demylenation occuring and needs treatment ASAP.

I am just trying to give you some options that might lead to some relief finally. I just had one of the most painful days of my life today. I took so much medicine to dull the pain that I literally passed out. Thank God I didn't have a lit cigarette when this happened! Luckily my husband had the children with him also.

I also understand the fatigue. I can feel so great and 2 hours later be wiped out for a week.

I hope you find some answers soon. Best of Luck.


Angela
Riceneuroni,

After 2 years of not being able to feel my toes and feet, I was just diagnosed with Chronic Inflammation Demyelinnating Neuropathy (CIDP). That was on October 5, 2004 after a 3 hr nerve conduction test at John's Hopkins Hospital. Now just 3 weeks later, I am suffering from skin pain on my abdomen, back, and right leg. It feels like a severe sun burn. My regular neuro gave me neurontin and lidocaine patches. They think that I am relapsing due my pregnancy, I am 29 weeks pregnant, so any therapy is pretty much out of the picture. I feel fatigue but who knows if it is the neuropathy or the baby. The numbness never really got to me but this pain is horrible. Have you ever felt anything like it?





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