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Hey you out there,
is there someone who has diagnosed with CIDP in combination with another primary or secondary disease?
Maybe some people who has the diagnosis CIDP and later on a combination with MS which was not found early?
Do you know the deep and strong intuition feeling inside that there’s something extra going on?
Hey guys!
I have a bid question!
Did anyone of you Rituximab at CIDP?
I‘m scared of doing Rituximab. I have a low heartbeat, asthma and I didn‘t tolerate IVIG well at maximum speed. I got an aseptic meningitis. Awful!!! My maximum is 60ml/hour and I get Antihistamines and Cortisone before my IVIG because of allergic reactions on my skin. Also I recive the acute therapy because the maintenance therapy is not enough. Also I have GM1 antibodies and now a test for paranodal antibodies has been done. No results yet. If this is positive, my doctor says the only option is Rituximab. The IVIG only helps for the first 1,5 week maximum and the my condition worsens. From march onwards we will be testing 2kg/week once a week. But I have serious concerns about Rituximab. Because I have a low heartbeat, Asthma and 3 children who constantly coming home from school with illness. I don‘t want to go to the doctor all the time because of „little things“.
Can anyone tell me about their experiences?
When I first started having problems with my leg, I was sent to a neurologist who diagnosed me with CIDP. After minimal testing, he prescribed IVIG as a treatment; the symptoms in my legs did get better. We later switched to SCIG treatments. Meanwhile I was still having weakness in my hands.
After some other medical issues, I was (finally!) referred to UCSF. There, the doctor initially questioned the CIDP diagnosis, and after blood and other tests, determined that, given the totality of my symptoms, that I did not have that (unless I had a very rare type, MADSAM, which she hadn’t ruled out completely yet- I have more MRIs and a spinal tap coming up.). She indicated that I could stop the SCIG treatments if I wanted (I did).
So here’s my question: How do I deal with the original doctor? I canceled one appointment with him, but have another one scheduled. How do I tell him that I think he misdiagnosed me, and that I trust my new doctor more?
Thanks for any advice.
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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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Hello,
Two weeks ago I received my first 3 IVIG loading doses for CIDP. Although many of my symptoms have improved I have noticed that my heart rate and blood pressure are up from my longterm normal. Can anyone tell me if this is something I should worry about or will it go away after a while?
Thanks for your help,
Petra.
