As a recently diagnosed and extremely frustrated CIDP patient, I was very dismayed when I could not get my desired response several weeks ago about what recovery felt like (I posted on various websites for folks like us). I greatly appreciated the responses and understood the common theme of "everyone is different" but it wasn't what I was looking for. Today, I want to share my experience so far in hopes that it is helpful to my other kindred spirits who are dealing with CIDP.
Brief synopsis: Tingling symptoms started March 2014 while pregnant. Numbness in feet got scary in mid-June, balance was very off. Hands and legs were horrible by birth of baby August 7. Could barely walk without major assistance. Visited neurologist in March but only have hyper reflexes. Turned down MRI since I was high risk and couldn't do anything until baby was born (they thought it was a disk). Two days after coming home with baby, went back to neurologist. Had MRI that showed a slight bulging disk but nothing that would cause my problems. Then, did lumbar, EMG and nerve conduction, and lots of blood work. Neurologist suspected CIDP (he had a GBS patient a year earlier) and confirmed it after lumbar puncture. Started IVIG 5 day loading dose, followed by .4g / KG every two weeks.
Recovery: I found myself very slowly improving when I first started my loading dose. I had extreme numbness in feet an hands and large portions of my legs, including my buttocks. The first thing I noticed was about 5 days after the doses, I realized I could feel temperature on my feet. I had not realized I couldn't feel hot and cold on the bottom of my feet. From there, I noticed that a few days before my next treatment, I was extremely sluggish, weak, and felt like I was going backwards. Once I had the infusion, I felt much better (not great but an improvement). I felt like I was on a chutes and ladders game board. My doctor mentioned I could add prednisone but that it could potentially be an issue with the insurance company and that IVIG was better. Plus, we could know which treatment was making the difference. Just a note, I tolerated IVIG well and had no side effects like headaches, flu like symptoms, etc.
Even with a little recovery, I was going way to slow for this formally independent, full-throttle person who now was barely hobbling around with assistance and could not take care of a newborn. The next appointment I went to, I broke down and asked for prednisone. I was miserable and willing to accept the nasty side effects if I could get better. The doctor obliged and I was started at 120 mg, every other day, and a strict tapering schedule. Meanwhile, I was not sitting around. He and I had already talked about going to get a second opinion. We got my records up to Johns Hopkins to see David Cornblath. Within a week, I was canceling work and finding a baby and dog sitter so we could go to Baltimore.
Dr. Cornblath saw me immediately and was very thorough. He did not rush me through an appointment. He asked great questions, examined me, and did another EMG. What he did was fully confirm my diagnosis. Although I was on the right treatment, I was not on the right amounts. He put me on 60 mg of prednisone every day and 1 g / KG every three weeks of IVIG. This was exactly a week before my sister's wedding.
Within a week, my hands showed a remarkable recovery. I started walking with a somewhat normal gait on my rollator. I noticed my legs didn't shake like leaves. The next week my weak legs got stronger. Much less numbness, very little anywhere. Tingling feet and numbness down there but MUCH better.
This past week, I started walking with a cane with confidence. I walked a mile pushing the stroller in 40 mins. I couldn't walk from couch to kitchen without feeling like a ran a marathon two weeks ago. Three days ago I walked up and down my outside stairs, holding the rail but with no assistance, slowly. Yesterday, I went back to the gym for the first time and did the recumbent bike for 30 mins and the ab machine for 10.
Today, I am sitting at the infusion center getting my first new big dose of IVIG. Our game plan is to start tapering me off prednisone next time I visit Dr. Cornblath but will stay on IVIG.
I have no idea if I can keep up with this level of progress but I am thrilled to have it. I am thankful. As a professional harpist, I hope to be back in shape playing soon. I want to drive again. Most importantly, I am ready to relieve my husband from diaper duty, which I have not been able to do since I can't walk and hold the baby. (You know it is bad when you know exactly how many diapers you have changed and you have a 10.5 week old).
I will continue to give updates. I am staying positive. I hope that my experience will help others like me find hope and encouragement.