CIDP – Adult – New
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September 10, 2021 at 9:06 am
New here. I was diagnosed with CIDP in ’20 ( I have other major medical issues ). My IVIG Gammagard treatment failed due to severe allergic skin reaction (made worse by medical mismanagement. I nearly died I think).
So, now the N Rx’d six months of Phyical Therapy (I’ve been given too many steroids and that was part of the “mismanagement”….the drug rep checking on my welfare said a skin reaction was not possible when I asked him, so I went to my rhuem and got steroid treatment…all summer….compounding the problem….it was awful….just leave it there I guess). Dr. said it can’t stop the progression but hopefully save my strength. I’m 6” and in my early 50s. My weight has already plummeted again to 135 pounds ( I gained weight and looked normal with plasman. My tinnitus went away, almost, too. Now it’s back )….
So…..I’m scared…. I did not want to believe CIDP is as bad as it is…but it is….right?? My arms locked up before the plasma…could not move them behind my back or reach and pull up or bend and grab down. I am a professor and musician. Recently lost my mom to Covid. I want to continue teaching and creating and I don’t want to waste away or lose my mobility!
Any advice for a newbie here?? Apart from PT, what should I do? I have no idea. Eat healthy. Exercise. Hope/Pray/Positive. Pursue my passions. What else? Thank you
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September 10, 2021 at 2:35 pm
Diagnosed with CIDP thirty-two years ago at age 54. Mine is recurring/remitting and easily ‘put to bed’ with only a month on steroids. I feel so badly for you snd can only imagine what you are going through.
You don’t say where you live but have you looked into the GBS/CIDP centers of excellence? This website gives doctors’ names and contact info and state whether their member doctor specialized in GBS or CIDP. Here in the greater Los Angeles area, their CIDP member specialist is affiliated with Cedars Sinai hospital. I hope you are able to find a city close to you that has such a center. It sounds to me that you are in such need of a special that even travel money would be warranted.
Sorry if I’ve taken your time if you’ve already been to one of the Centers’ doctors and haven’t achieved the level of relief that you need. I don’t really have anything else to offer. Hope you can find relief.
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September 10, 2021 at 2:51 pm
Mmmorm, you can contact me at ca.kimichan@gmail.com
This is not my real email (before being ‘rule-shamed’ by any other members), but it is one I keep open only to initiate contact with someone who may wish to communicate with me.
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September 10, 2021 at 3:03 pm
Cher,
I am extremely grateful for this information. Thank you. I honestly won’t post enough to be rule slammed probably. I’m sorry that happened. The world is mean enough.
~M
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