There’s a new crippled sherif in town
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October 25, 2019 at 9:42 am
Hey all,
I’m Ron from Connecticut. I was diagnosed with CIDP in 2017. It all started with numbness in my toes and over the years progressively worked it way up my legs. Soon to follow was my fingertips and now my hands. My neurologist put me on Gamunex infusions for 18 months, which kept the weakness at bay but did nothing for the inflammation and neuropathy.
Long story short, Seeking out an infectious disease doctor because of suspicions of recurring Lyme, I had previously been battling with back in 2007.
I stopped the Gamunex infusions and started Lyme treatments after being diagnosed with 3 different stains of Lyme. 6months later the Lyme symptoms seem to be gone but the CIDP symptoms have become bad.
Now I’m back with the neurologist and we plan commencement of the Gamunex. I hope the break in the Gamunex treatments didn’t do any permanent damage, but now the CIDP symptoms are so terrible I’m unable to work. I’m hoping that the Gamunex will reverse some of the symptoms, mainly the weakness and unsteadiness. If things keep progressing the way they have been, I’ll be in a wheelchair. -
October 30, 2019 at 9:41 am
Your story is very similar to mine. I was diagnosed back in 2014 with CIDP and diabetic neuropathy. Like you I suffered the nerve damage and was forced to take a break in treatments. We stopped the progression of the disease, but did not reverse all of the damage. I needed a cane in order to walk due to the lack of balance i had, and the weakness in my legs forced me to stop working. (I was a prison supervospr.) I wish you well and warn you to be VERY careful about the numbness in your feet.
I have needed two amputations due to injuries to my feet that i haven’t noticed. I have literally broken a toe and burned my feet I am blessed to still be walking with the aid of a walker and a prosthetic and to still be living independently. Good luck to you and take care.
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