Hi, I was diagnosed the same way EMG/nerve study and the top end of normal proteins in spinal fluid. Currently waiting for IVIG insurance approval. Hope all goes well next week!
Well, finished my initial 4 days IGIV treatment yesterday, felt some tiny improvement after day 3, but yesterday after infusion and all day today it’s much worse, actually my symptoms are worse I’ve had it since the problem started. So upsetting. Has anybody had anything like I’m describing? Thank you in advance for your feed back.
Hi Everyone.
I was diagnosed with CIDP in April 2023. I had GBS in 1982.
My CIDP went all the way to wheelchair bound. My adult chikdren had to do everything for me. I had a video neurologist appt from CA, I was in NM. Then my kids took me to CA. Since I was paraylized and rode in a car a long distance, I had a pulmonary embolizm. That got me in the Hosp fast. Since I was on hepron already when the Dr came in the next day he did many tests, but no LP. I got to where my left eye wouldn't move.
Dr put me on 60 mg of prednisone then IVIG and then Cell Cept. Only did the 1 round of IVIG weaned off of pred in 6 months. Still on Cell Cept. Also am on 1200 mg gabapentin 3x a day.
I am doing well. Fear of falling is real. I do get fatigued. My sleep is off cyle. Gained wieght lost muscle.
Very Blessed to alive.
Thank you. KATHY
Numbness, and lack of sensation in outer limbs and extreme fatigue. Some variants have a lot of pain also.
Mine started with an odd virus which caused daily migraines for two months then the numbness in the lower legs. When it spread the the lower arms and hands my neurologist had me hospitalized. But they were looking for a spinal issue or MS. A neurologist working the floors over Christmas was looking at my case and disagreed and did a spinal tap and nerve conduction test and found CIDP- further tests showed the Acute Motor Sensory Varient. I will have it for life.
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1 ReactionI also had no improvement after 8 mos of IVIG infusions.
They did nothing for me at all.
Very frustrating to say the least!
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2 ReactionsHi Everyone.
I was diagnosed with CIDP in April 2023. I had GBS in 1982.
My CIDP went all the way to wheelchair bound. My adult chikdren had to do everything for me. I had a video neurologist appt from CA, I was in NM. Then my kids took me to CA. Since I was paraylized and rode in a car a long distance, I had a pulmonary embolizm. That got me in the Hosp fast. Since I was on hepron already when the Dr came in the next day he did many tests, but no LP. I got to where my left eye wouldn't move.
Dr put me on 60 mg of prednisone then IVIG and then Cell Cept. Only did the 1 round of IVIG weaned off of pred in 6 months. Still on Cell Cept. Also am on 1200 mg gabapentin 3x a day.
I am doing well. Fear of falling is real. I do get fatigued. My sleep is off cyle. Gained wieght lost muscle.
Very Blessed to alive.
Thank you. KATHY
-
Like -
Helpful -
Hug
4 ReactionsNumbness, and lack of sensation in outer limbs and extreme fatigue. Some variants have a lot of pain also.
Mine started with an odd virus which caused daily migraines for two months then the numbness in the lower legs. When it spread the the lower arms and hands my neurologist had me hospitalized. But they were looking for a spinal issue or MS. A neurologist working the floors over Christmas was looking at my case and disagreed and did a spinal tap and nerve conduction test and found CIDP- further tests showed the Acute Motor Sensory Varient. I will have it for life.
-
Like -
Helpful -
Hug
1 Reaction