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PN: From Anger to Acceptance

Neuropathy | Last Active: Mar 5 9:33pm | Replies (81)

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@dbeshears1

I went to my PCP on Day 4, who scheduled a Neuro appointment whose first opening was three months out. On about Day 6, it was a weekend and went to the ER because I noticed blood in urine and I couldn’t walk without assistance. They sent me home awaiting tests, but called me back the next day to be admitted because the cultures came back with a severe UTI/Kidney infection that needed IV and supervised treatment. It was the 2nd day in the hospital that I fell on the bathroom floor and was too weak to get up and landed in the wheelchair for 6 months and extensive PT.

So the antibiotics were AFTER/during the infection. Docs said they didn’t get enough fluid from lumbar puncture but thought GBS was negative. Some Neuros say they think the infection I had was coincidental to the PN (I just find that hard to believe). Duke would later suggest, at a consult 4 months into it, that it “maybe” was a viral or post infection disorder that presents like GBS.
The hospital I was in for 2 weeks (before being transferred to rehab home) was in Myrtle Beach and they didn’t have a neuro department. So the hospital didn’t even have the capability to do EMG there, that came in about 5 weeks. Of course, I had no idea what had hit me and knew little about PN, and as it took over my hands as well at the end of those 10 days, using phone and computer was not an option for quite awhile so I wasn’t in research mode.

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Replies to "I went to my PCP on Day 4, who scheduled a Neuro appointment whose first opening..."

Deb - OMG - you sure went through a lot with this. You mentioned in the past you had to give up your career and I understand why. I agree with you about the infection was coincidental with the PN. That is just too hard to believe. Docs never want to blame meds. Glad you're doing much better,