Anyone been diagnosed with CIDP? It's very rare

Yes I have been diagnosed with cidp

Yes I have it and was diagnosed in 2019. It took 4 years for all the puzzle pieces to line up. Treatment began soon after DX but was not affective, I opted to stop the infusion of human immune globulin. Watching my diet and frequent trips to the physical therapy clinic where there is a heated pool I can do basic water aerobics and stretch. I've found this particular Facebook page to be a good place to share with others like us. https://www.facebook.com/groups/gbscidpwarriors

Yes, I agree. Yet the neurologist said my husband had CIDP based on her exam and results of the EMG test. Not knowing any better we went along with it. My husband had 3 infusions which did not make any difference. So we went for a third & fourth opinion until the last doctor as I mentioned said my husband's condidtion was caused by alcohol abuse. He stopped drinking and is feeling much better but it took 4 neurologists to get the correct diagnosis.

Has anyone heard of BME (bone marrow edema) ? Also have a bakers cyst that is a solid mass. Not drainable & in need of a TKR … this is all in the same leg.
I’m 61 and just not ready to give in. The pain is the worst I have ever had, And I’ve had a hip replacement and back surgery. Hands down this wins the Prize. Unfortunately I have a Dr. That dose not believe in pain medicine.
I’m hoping to find something out on the 26th after seeing an orthopedic surgeon. Fingers crossed Mayo friends!!! .

Hi @klhilton, sorry to hear about the pain and need of a TKR. I think you might find the following discussions helpful:

-- Bone Marrow Edema: https://connect.mayoclinic.org/discussion/bone-marrow-edema/
-- Baker’s or popliteal cyst: https://connect.mayoclinic.org/discussion/bakers-cyst/
-- Baker's Cyst: https://connect.mayoclinic.org/discussion/bakers-cyst-1/

Hopefully you will get some answers at your upcoming appointment with an orthopedic surgeon.

I don't think that a test to tell you for sure that you have it. Perhaps if you start the infussions and feel better that would be an indicator. My husband, as I've said, had 3 infusions and felt no better. We then went for another opinion...good luck !

@foxauthor good morning.
I have been diagnosed with CIDP but not all my doctors agree. Some say you have to have a spinal tap for protein to determine. I haven't and don't want one. I have small fiber neuropathy by punch biopsies of my feet and legs. But since that test, my neurologist said my illness was progressing up my legs and arms. I had a bad "flare" and after that he wouldn't prescribe my meds. Said my GP could do that!
I'm in a rural area and no one is familiar with CIDP. I hurt so bad in my legs and my arms are weak as well.
I'm on subcutaneous gammaglobulin for years as my immune system doesn't have those. My immunologic thought as well as neurologist that that would help my illness (es).
Something is happening to make me worse, I do have acute Lyme disease and chronic Lyme. My body is full of inflammation. I could go on, but my arms hurt.
Does this sound like what you have? I fall too.
Good luck,
Trish

Hello Trish
I was diagnosed with CIDP about a year and a half ago! My first symptom was paresthesia in my lower extremities and severe weakness in my legs. I had an EMG that diagnosed demyelinating peripheral neuropathy, and then had a lumbar puncture that showed high protein levels and low WBC count…… That is one of the recommended ways to diagnose CIDP. You mentioned that you were on subQ immunoglobulins, is that helping you at all? Did you ever have IVIG prescribed or did you go directly to SubQ infusions? I also saw that you had Lyme disease, are you currently being treated for that as well?
I find that my diet plays an important role in my health and how I feel everyday. If I eat protein at each meal and try to keep my diet low in sugar I have more energy and just feel better in general. I also like to exercise three to four times per week, it may not be nothing more than a walk but it is important to be active!
Have you thought about going to a major medical facility such as the Mayo Clinic for consultation? Please keep us informed on you progress and I wish you well.
Kim

@kimegraves good morning. I am being treated for Lyme disease as I have 2 dogs and guess I got bit again. It was Lyme disease they think which started the neurological decline back in 2000. I was a Park Ranger in college. So lot of misdiagnosed things until he did ,infectious disease in Tampa, a lot of Lyme testing and I had the worst case he'd seen. I went on treatment and got worse. I was paralyzed 3x and had to leave my RN career.
Chronic Lyme and small fiber neuropathy which they say has progressed up legs and arms.
Before I had to move as my Tampa doc ordered IVIG and diagnosed the CIDP. I kept falling no use of my legs. So I don't know but I have been on IVIG in infusion clinic for years then offered subcutaneous ig and it is so convenient. I wish I could go to a research hospital but I live so far and can't drive. Have not the money, my insurance would not pay for Center of Excellence in Richmond.
I was vegan, but started eggs for protein.
Have frequent flares and I exercise by walking dogs, stationary bike and dance.
We had a wonderful FB Support group for CIDP but the leader got too sick.
Again my arms tired, more later .
Trish

I was diagnosed in 2014. Started iVig in January 2015 and have continued every 2 weeks since then. This diagnosis and treatment saved my life!! I have been able to have a normal life as well as travel. This is a frightful disease but can be controlled! I have good days and bad but I enjoy life!!!