Hi Marie
I also get ivig every 3 weeks for small fiber neuronopathy/ganglionopathy.
Quote:
Originally Posted by villier
Hi Hopeful
I also get IVIG every three weeks although I am dipping at two and I am back to square one the third week,on going fight with my neuro, my pain level is also about a 4 which is great and takes the cramps away completely(heaven) .
You mentioned Sjogrens have you had bloods, shirmer test and lip biopsy done? I have had bloods and schirmer done which came back negative although lip biopsy can be positive I get mine done next week.
I see you are taking Mrs D's advice on slowing down and taking things at a gentler pace, I have weakness in my legs and arms with added osteoarthritis I had to give up my job as it was to phyisical for me.
Anyone with PN knows exactly what you are going through so you are not alone, hope you get some answers soon keep us posted how you go.......Marie
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