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CIDP Diagnosis

Posted by hjw473 @hjw473, Dec 10, 2025

I was diagnosed with CIDP a little over a year ago. I have symptoms that could or could not be attributed to CIDP, I can't seem to get anyone to take everything as a whole and work on the big picture. I am so frustrated. What are your symptoms, experience with CIDP, treatment(s), team? One doc?

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rsafr | @rsafr | 21 hours ago
In reply to @dthorson "I was diagnosed with CIDP around two years ago. I am currently doing IVIG treatments. They..." + (show)
Profile picture for dthorson @dthorson

I was diagnosed with CIDP around two years ago. I am currently doing IVIG treatments. They confirmed it was CIDP by doing a lumbar puncture and nerve tests. I go through the Mayo Clinic in Rochester Minnesota.
I feel like I currently live a fairly normal lifestyle, but most things with my hands, and the dexterity of my fingers is impacted. My balance is affected, but the IVIG infusions help this.
I’m just wondering if anyone with CIDP has trouble with blood pressure? I’m having a lot of trouble getting my blood pressure under control and I’m not sure if it’s related to CIDP or heart surgery that I had about 10 months ago.
I also have unexplained weight loss. Anyone else have trouble with weight loss?
Thanks.

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@dthorson
I was diagnosed 1 year ago and started IViG 1 year ago. I do home infusion with a nurse 5 days in a row every 4 weeks. My blood pressure is staying very normal. However, I am experiencing unintended weight loss (26 pounds over the past 6 months).
Like you my hands give me the most trouble. Any type of fine motor skill is pretty much gone. Not able to button a shirt, use zippers, hold a glass unless it's with both hands.
You stated you go thru the Mayo Clinic in Rochester. Is this for treatment or something else? I have an appointment there on Febr. 3. I'm not sure what to expect but maybe you can shed some light for my visit? I have 7 appts. set up by the Neurology dept. for some testing, blood work and 2 consultations. My hope is to learn if there are other treatment options. By the time I get to the 3rd week in between infusions, I'm really hurting.
Thanks for any insight

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dthorson | @dthorson | 15 hours ago
In reply to @rsafr "@dthorson I was diagnosed 1 year ago and started IViG 1 year ago. I do home..." + (show)
Profile picture for rsafr @rsafr

@dthorson
I was diagnosed 1 year ago and started IViG 1 year ago. I do home infusion with a nurse 5 days in a row every 4 weeks. My blood pressure is staying very normal. However, I am experiencing unintended weight loss (26 pounds over the past 6 months).
Like you my hands give me the most trouble. Any type of fine motor skill is pretty much gone. Not able to button a shirt, use zippers, hold a glass unless it's with both hands.
You stated you go thru the Mayo Clinic in Rochester. Is this for treatment or something else? I have an appointment there on Febr. 3. I'm not sure what to expect but maybe you can shed some light for my visit? I have 7 appts. set up by the Neurology dept. for some testing, blood work and 2 consultations. My hope is to learn if there are other treatment options. By the time I get to the 3rd week in between infusions, I'm really hurting.
Thanks for any insight

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@rsafr

I went through Mayo Clinic in Rochester for the diagnosis and I live here so I am doing my infusions here also. My IVIG infusions were once a week but they have now changed me to once every two weeks as they feel I am getting stabilized.
Because of my hand issues, I have tools to help me button my shirts and zipper extenders. Holding a glass is a challenge for me also. I try to use mugs with a handle for almost everything. Also, I have no muscles in my hands to open anything like jars, juice bottles, etc. how about you?
I’m not sure what they will have you do at your appointments, but I’m sure it is the same as I went through (nerve tests). I wonder if you would be better off doing weekly infusions? Three weeks is a long stretch.
Also, like you, I lost 30 pounds.
Hope this helps.

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