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Has anyone really gotten over CIDP?
Autoimmune Diseases | Last Active: May 20 11:48am | Replies (49)Comment receiving replies
@kgitti
I am waiting to be tested for MS and CIDP. The symptoms are terrible and I feel for you and your suffering and struggle. I have been suffering a downward decline since 2017. My depression and extreme exhaustion keeps me in bed or on the couch most days and if I do anything, I pay for it physically for days.
My hope is for diagnosis and treatment to stop further decline. I am a 54 year old single parent of a 14 year old son who depends on me. I lost my job in October and unable to work now. Hoping to qualify for disability at this point since I can get out of bed or do much most days. It would be wonderful to hear if anyone has improved following a CIDP diagnosis.
Replies to "@kgitti I am waiting to be tested for MS and CIDP. The symptoms are terrible and..."
I was diagnosed in 2014 and started IVIG shortly thereafter. In December of last year, my Dr and I decided instead of considering scig We should consider discontinuing treatment. Thus far I am symptom Free and free and hope to continue to be that way
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Unfortunately nothing has helped with my CIDP.
Have been on all the routine meds, and IVIG infusions also for 8 mos with no improvements.
Cannot take steroids due to hypertension history.
Right now I’ve been progressing slowly for past 12 years.
The numbness is now in my right hand,which affects me greatly, and I cannot hold things such as eating utensils,etc.
Trying to do it with my left hand,if possible.
I tried getting into Mayo Clinic in Arizona, but they’re not accepting any new Neuro patients at this time.
Meanwhile my balance issues are terrible, and I cannot feel my feet at all.
My quality of life stinks right now, and there’s a lot I can’t do because of it.
Good luck to you, hope you find some relief.