Husband cipd diagnosis first time post
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Hi. Overview of my husband’s progression. Started with numbness and tingling in feet about 2 years ago. PCP decided it was diabetic neuropathy and threw his hands up. A1C never over 5.1. Pain and numbness moved to hands. insurance finally changed and went to Neuro at Jefferson in July 2024. Gabapentin not much help and then dulexetine worked great. Drastic change 3 weeks later – from walking to walker to not walking. Loss of coordination in hands, unable to grip, weakness everywhere. Had emg and Neuro admitted to er based on denervation and damage seen. Told dx is cipd. First ivig in hospital seemed to help a little. Sent home ot/pt able to stand with assistance. Pain increased steadily, unable to tolerate Therapy. Therapy stopped and has been doing nothing beside lay in bed in pain. Fought with insurance and finally got 2nd ivig 8 weeks later, so back to square one as if no ivig. Not seeing change after second ivig. 4 weeks later, still bedbound, pain increasing and no change in hands. Third ivig this week. Questions- anyone having this constant pain? Anyone try medical marijuana? His hands get stuck and cramp…toes curled over…is this cipd? He has never had a decrease in pain or numbness. Rapid decline 2 months ago. They want to put him in intense in patient rehab, but his pain is so bad…wouldnt that be a waste? Sorry to be so long but hoping for some answers we aren’t getting much help. They are saying have 3 ivig every 4 weeks and should see improvement in 3 months. Does he just lay in bed until then in pain?
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When I was diagnosed 5 years ago, I had a 4 day course of Solu-Medrol, which was then followed up with a weekly dose for 8 weeks, then fortnightly, then eventually monthly for a few months.
The improvement was pretty dramatic from being bedridden to a walker, walking stick, and then nothing within 2 months.
I did have a relapse last year, but knowing the symptoms, I contacted my Neurologist and I once again had a 4 day treatment of Solu-Medrol, followed up with 8 weekly doses.
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