Anyone been diagnosed with CIDP? It's very rare

My legs are getting weaker and they hurt all over. Now my calfs have a sharp pain. I walk like I'm drunk. My balance is terrible. I hope to start the infusions sometime this week. Thanks for asking.

I start the infusions on July 22 for 5 straight days.

It was my very first diagnosis, which I received treatment for, which caused me to rapidly get much worse, before I got my other treatment for my final diagnosis.

Hi, @suzeq - just to clarify ... did you indeed end up having CIDP, or was your diagnosis changed, in the end?

Hello, do you mind describing your treatment for CIDP?

My neurologist currently has me receiving IVIF Gamma Globulin every 3 weeks. I hydrate heavily for 2 days before and 2 days after to help with headache side effects. Before the infusion I am given orally, Benedryl for possible rash side effects, and Tylenol for headache. My infusion is done slowly, taking approximately 5-6 hours as to hopefully prevent side effects. I commonly have fatigue for the next few days and sleep as needed. But I also have fibromyalgia and other chronic pain issues .

Hoping you will get some help soon. God bless you.

That’s a good question because I still don’t completely understand what I’ve been told (or not been told). Everything I went through, from the beginning to the present is a Long Story. Anyone who wants details, I’ll share, but for now I’ll keep
It short. Pre CIDP diagnosis, I had neuropathy in my feet. It started mid summer, 2004 & was a very slow progression. In Feb., 2005, my PCP diagnosed me with Peripheral Polyneuropathy & referred me to a Neurologist, who
gave me the CIDP diagnosis. I was supposed to get 3 IVIG treatments, 1 per month for 3 months. Each lasting 5 days. During treatment I started progressively getting worse. I couldn’t get up or down stairs walking, so I had go on my behind. I could barely stand & if I was standing in one place for more than a few minutes I’d fall down. I was running fevers & having Profuse night sweating, having to put towels underneath & above myself & changing soaked pj’s.
When I called the Neurologist’s office the nurse asked if I was going through menopause!
Eventually the information got to the Dr., &, long story short, he said because of my response to the IVIG, the neuropathy was a secondary symptom to a larger primary problem. He referred me to Duke. I received lots of testing (in addition to the Neurologist’s testing) & even a splenectomy! Afterwards, following complications from the splenectomy, monoclonal protein was found in my blood. I then received Plasma Apheresis treatments (did not benefit from). I ended up being referred to the Duke Adult Bone Marrow Transplant Clinic & then visited the Mayo Clinic. Both Clinics decided I should receive stem cell transplant chemotherapy. At the time, the diagnosis from Mayo was an “either or” of Multiple Myeloma or P.O.E.M.S. Syndrome.

Can you scroll down to where I responded to Lisa Lucier’s question?
I elaborated on my IVIG treatment & experience.
Even though I had a very negative reaction & I was getting ready to go Duke for new testing & diagnosis, the 2nd treatment was administered. It was supposed to be 3 treatments. One per month for 3 months & each treatment 5 days straight. The pic line stayed in my arm all 5 days (with lots of problems).

Hello jazzy, thanks for replying. Due to the high cost of gamunex they decided to use a generic called panzyga. My cost is 0 but I'll; believe it after a few weeks of not getting a bill. The panzyga seemed to help during the initial first 5 days
But after a couple of days later I'm back to the way i felt. I'm hoping the maintenance dose will help. When you were diagnosed did you get a 2nd opinion? Thx

The symptoms most bothersome is the pain and weakness in my legs. I'm now using a walker because I have fallen too many times. I also have terrible back pain.