CIDP Diagnosis

@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

@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.

@fkfp I ended up having to have a nerve (very painful) and muscle biopsy that was sent off to a specialty lab to get the diagnosis. It had to be done under general anesthesia. That's how my neurologist got insurance to cover my ivig treatments every 3wks for 3 1/2yrs. It slowed the progression a bit.

I went through all the other tests first, nerve conduction study, spinal tap, MRI, etc.

I am 55 year old female diagnosed with CIDP 3 years ago. I am diabetic, have hypertension, allergic rhinitis, heartburn, intermittent GI symptoms, frequent ear infections, psoriatic arthritis, osteoarthritis, probable rheumatoid arthritis without positive Rheumatoid factor, chronic fatigue and history of multiple fractures in using leg, foot, and shoulder due to frequent falls all these falls occurred from what was believed as body's rejection of hardware placed in my toe for hammer toe surgery. Dr has me on prednisone, plaquenel and IVIG treatment every 21 days. Been told very rare condition, my sister has a condition that is even more rare TTP both of these conditions are auto immune. In my case pain is in constant state, feel weakness in multiple extremities, feel like I am tipping forward and balance is off. I developed a tremor in my right hand believed to be from prednisone at first so dosage was cut down no improvement. One of my eye lids drops almost like person who has had stroke which I haven't had. IVIG helps I have gotten stronger while walking , developed a drop foot with one worse than other. Feel tired all the time, intermittent insomnia or fragmented sleep. Not sure if others are affected in same way. My doctor is part of research team best in the area I am in. It was difficult to find actual diagnosis. Hope this will help others if they are diagnosed.