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Member Neuropathy Journey Stories: What's Yours?

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

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@artist01

@johnbishop John, you are a Research MACHINE! lol. Wonderful post, with great insight and suggestions, as well as all the site referrals.
I developed neuropathy issues after my diagnosis of GCA, and the resultant 1000 ml Prednisone injections for 3 days while hospitalized. I also had a stroke on that 2nd day. I've always blamed the neuropathy on Prednisone.
It started rather unnoticed but soon progressed to full legs, left and right, and the numbness was extreme. Now it's below the knee, both legs, and still quite extreme. My doctors have indicated not much can be done for it, so I haven't pursued an appointment with my neurologist or tried any of the prescription meds or creams, etc.
Recently I became aware of it getting much worse in the evenings and through the night. From that point, I analyzed that it might be worsened by diet choices. And eureka! After a period of trial and error, it became obvious it was carbs, in my case, that made it worse. Potatoes, a favorite of mine, were the worst culprit, but also bread, pasta, rice. This week, I've made the decision to cut carbs from my diet. I'm Diabetic though, so am cautioned to watch my numbers and still have SOME carbs. We'll see how this works out. Best to you, John.
Laurie PS, I'm off Prednisone since November because my WBC and neutrophils crashed, but still on Actemra injections for the GCA.

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Replies to "@johnbishop John, you are a Research MACHINE! lol. Wonderful post, with great insight and suggestions, as..."

Thanks for the kind words Laurie @artist01. Good to hear you are off of prednisone. Potatoes, bread and pasta are really hard to say good bye to for me. Haven't quite cut the cord yet but have frayed it quite a bit 🙂 Happy Friday!