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CIDP, While I am waiting for the tests, genetic?
I’ve have neuropathy since 2016. It started as small fiber, and a short time later large, with evidence of demyelinating polyneuropathy. That was back in 2016, and the neurologist I was going to never said a word about his findings. The only reason I discovered this is because I cleaned out my medical records last weekend. It jumped out at me, and I was quite surprised!
Between 2016 an now, I’ve been on several steroid medications for Vasculitis, but I had been noticing that the PN was getting worse very slowly. Currently, I’m not taking a high dose of steroids. All of a sudden the PN is spreading and becoming more painful. My legs are especially bothersome. They feel like I’m walking on jello. I’m very wobbly, and my direction is not always accurate. I sway “off course” many times.
I’ve started using a cane.
My current neurologist is going to be doing neurology testing in 10 days. If I have CIDP, I’m going to ask to be treated with IVIG first and foremost. If I have had this for 7 years already I need to make sure I don’t fall behind.
Additionally, my father was diagnosed with CIDP at about the same age as me…
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Such a shame this final diagnosis has taken so long.
IVIG has good results on a whole so hopefully will give you a new lease on life.
I am having my first infusion next week ...looking forward to some relief
Good luck with your treatment...
@overeazy ah, my body is very sensitive. I take after my mom.
2 regular Tylenol make me drowsy! She had the same reaction…
I skipped going out to church this morning because I was too groggy to drive. Tonight, I’m going to take the Gabapentin earlier so I can function better in the morning…
Thank goodness I am retired so there’s no daily pressure to be alert. I have Dr appointments but I schedule them for during my energy prime time during the day.
I’m blessed!
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1 ReactionI understand. Maybe take it with food too?
To all my beautiful PN friends I’ve read so many disheartening stories of this awful disease. We all have choices in life some good some bad, but we all do have choices. I’m 89 and l have seen and done a lot in my lifetime and I believe the reason I’ve made it this far is because of the choices I’ve made. A lot of the choices I’ve made weren’t easy BUT I’ve always said to myself ( Always Be Positive) I think that was the secret. Yes I feel as though we are a family sharing our thoughts and feelings and hopefully by doing that we might just might be able to help those on our family. No I don’t have any answers snd the only saving grace is to know I’m not alone. I know in my heart we’ll find a way. GOD BLESS U ALL👍
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