CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Debbiewave,
I am in Albuquerque and have received good diagnostic and treatment here.

Yes first IVIG for three years then SCIG with steroid runs sometimes when I get a virus. It has worked, keeping my desease at bay with some improvements. I have a life.

Sounds like he has checked all the boxes for CIDP already.
Try to get an appt with neurologist, Dr. Dai at Rust Medical Center in Albuquerque, my doctor. Sounds like he should be on IVIG or SCIG like me.

Thank you. I will call him today.
Debbie

I was on IVIG for a year it did slow things down. But either it or the steriods they use with it caused me to start losing some of my vision. It did help the CIDP (that they now admit it was caused from the covid vaccine )
Now I am on the rituxan which is working much better , one every 3 months.
The nuerologist and Hemotoligist (sp??) Are now talking about the new shot vygart I seen the ads on TV

If you are looking for answers forget the neurologist. Dr Anne Oaklander
started the majority of the testing. She told me to see these doctors.
Rheumatologist
Immunologist
Neuromuscular physical therapist
Look for a new neurologist do not tell them about the other neurologist. These are off the foundation for peripheral neuropathy’s website. If another state closer than these doctors try them.
https://www.foundationforpn.org/support/find-a-doctor/
John A Campa III, MD
Clinical Neurosciences
7520 Montgomery Blvd NE-Building-E, Ste E4
Albuquerque, NM 87109
PH: 505-508-1543
Specialty: Neurology, Nerve Pain

Tanuj Saaraswat, MD
Presbyterian Medical Group
6100 Pan American Fwy NE
Albuquerque, NM 87109
PH: 505-823-8777
Specialty: Neurology

The only reason I saw not to tell them about the other neurologist once one neurologist gets something in their head they don’t listen to the patient. I am not saying that’s the case with all doctors. My aunt truly believed she had back problems and all the doctors agreed. She had stage four cancer that none of the doctors in Lubbock caught. They thought she had a bed sore but it was the cancer eating through her back. She died four weeks later. She was a previous cancer survivor and I believe that if the doctors had not listened to her and actually looked they would have found it in all the MRI’s and labs they did. All I am trying to say are doctors are not perfect they make wrong diagnosis go with what you believe.
https://m.youtube.com/watch?v=s66LvWQ5Qso

I’m doing it now. First time was five for five days straight and then once a month after that. At first it seemed to work, I didn’t notice it as much. Then it seemed like it wasn’t working as well. Now I’ve asked the dr to increase the dose, see if it makes a difference. Fingers crossed. Does it work for you?

I am seeing quite a few posts about CIDP. I took a survey and checked quite a few boxes. My new pain doc doesn't seem to think it is that. My MRI and EMG are fairly unremarkable, except that the EMG suggestd neuropathy(big surprise). How does one go about confirming CIDP? I'm sure I likely don't want it, but it would be nice to know exactly what's going on in my body to cause the ramping up of pain over the past fove or six months. The pain doc who manages my pain pump(which has never given a bit of pain relief) is about as helpful as a two-legged milking stool. At least the new pain doc has a few, new treatment options. Stil, would really like to know about CDIP.

I am going to have my first Rituxan infusion in a few weeks.
I hope it will help me as nothing else I did gave me any relief.
I had over 8 mos of IVIG infusions that did nothing for my CIDP, tried all the routine meds like Gabapentin, etc
None of them worked either.