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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Nov 23 5:30pm | Replies (573)

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@timkat86

Hi everyone – my name is Kat - I’ve been lurking in the background here for about 6 months trying to learn as much as I can about PN – though it about time to introduce myself. I myself do not suffer from PN but I am a voice/advocate for my husband.

Our story started last September when my husband, Tim, had a stroke.
Tim was a 58 year old Firefighter/paramedic/general contractor/father/grandfather/golfer/hunter/and all around adventurer. No preexisting conditions that we knew of at the time- had very thorough annual exams because he was part of the HazMat team with the fire department.
The stroke was serious but with some amazing intervention he came through unscathed. The doctors were calling it miraculous. He was out of the ICU within 24 hours and released from the hospital after three days. He literally danced his way out of the hospital. The hospitals PR department wanted to do a story on him!

During Tims stay they did find that his blood pressure was elevated and his A1C was up a bit. With that, they put him on BP medications, meds for diabetes, and a statin for “preventative measures.”

Three to four weeks after the stroke Tim began noticing some weakness in his right leg, at 6 weeks he began to fall. He went from dancing out of the hospital in September – to using a cane in October – to a walker in November – and even a wheel chair in December. It was taking weeks to months to get him in to see a specialist - who would in turn refer to another specialist. Who would order tests that you would have to wait weeks for. You can all relate to this I’m sure. In January they did an EMG that was horribly abnormal.
We stopped taking statins.
Docs continued to send us back and forth pointing fingers at eachother on who should be ‘treating’ him– it was ridiculous. Still no real diagnosis.
In March he was starting to improve a bit – but had to officially retire from the department. By May he wasn’t even using a cane much. Now, his balance is still off a bit, and his gait is a bit wobbly, but he gets around.

He has a lot of pain/neuropathy in his feet (mostly the right), sometimes lower legs, and sometimes in his chest/ribs.
He takes Lyrica for the neuropathy (was on Gabapentin from about Dec to March)

I feel like i stuck my head in the sand for a few months after getting nowhere fast - but i'm ready to start fighting again
Nice to meet you all,
Kat

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Replies to "Hi everyone – my name is Kat - I’ve been lurking in the background here for..."

Hi Kat @timkat86, Thank you for sharing Tim's neuropathy story. It sounds like he is doing much better but you're not sure about the diagnosis. Have you thought about seeking a second opinion or help at a major teaching hospital or health facility like Mayo Clinic?