I'm a 68-year-old guy who'd been reasonably fit and active, cycling and hiking regularly, living in Canada.
In January 2023, I woke with a sharp localized persistent pain in my left calf. I suspected a blood clot and visited my GP. An ultrasound ruled out a clot. I also seemed weaker in my left leg, obvious going downstairs. A couple of days later the pain disappeared but the weakness became symmetric, if perhaps less.
Over the next few months my legs became progressively weaker - I was having trouble climbing the steep slope up from the beach, or getting up from a squat without pushing with my arms. I got a referral to an internal medicine specialist "who knows something about nerves". Also a CT scan that showed no trapped nerves, a general blood panel, another ultrasound, and a fat biopsy (unpleasant). My reflexes were low (patella, elbow), but no numbness/tingling/pain and no obvious weakness yet in hands/arms to a subjective test (pushing against the doctor).
From the internal medicine specialist I got a referral to a neurologist, and also for a treadmill test, which showed a loss of stamina. By this time I was noticing some weakness in my arms, unable to lift more than maybe 40lbs. The neurologist performed a nerve conduction test and diagnosed I think generic neuropathy. He prescribed pulsed Prednisone (10 tablets/day for 4 days each month) which didn't help. On a followup visit my condition had worsened and he diagnosed CIDP. By this time the symptoms were getting annoying - difficulty getting out of an armchair, or getting things from a high shelf, or opening packets without using a knife.
A week or so later I became weak enough to be concerned about the trend, having trouble dressing or getting up from a dining chair. I checked into ER and was given 2g/kg of IVIG by the hospital neurologist. That effected what seemed like a miracle cure; I walked out of the hospital and two days later was back climbing up from the beach.
I was given a schedule of followup treatments to be done as an outpatient at a different hospital, the first in 7 weeks.
Unfortunately, the remission did not last and I was back in the ER in six weeks. I later found the IVIG monograph online which specified monthly treatments. Apparently supply and scheduling issues made that difficult as an outpatient with lower priority.
Another IVIG lasted only 3 weeks, and on November 24 I was back in hospital, on the neuroscience floor, where I've been ever since (through March 2024). I've had daily Prednisone (no help, but lowering my potassium level), monthly IVIG (less and less effect with each dose, the last virtually none), and one 4-week course of RituxiMAB, said to take 2-3 months to act. I lost all mobility except for my head, had difficulty swallowing, was unable to cough or sneeze, and had phlegm collect in my airway if I lay on my back. I spent most of my time online, using Android Voice Command on my phone to browse the web, read news, read e-books etc.
The RituxiMAB has I think finally kicked in. I slowly regained mobility over the last month, to the point of being able to sit up in a wheelchair and operate a computer mouse. However, I've lost about 20kg of muscle mass. My swallowing is now about normal. I'm scheduled to be moved to a rehab floor soon.
Moved to neuro rehab ward about 3 days ago.
They've got a gym with a few exercise machines, and physio/rehab with things like standing assist and silly putty and large balls. My schedule currently has standing frame, nu-step machine, physio, and occupational therapy. On the good side, there's a hot water spigot and I have instant coffee. Also, Iv'e got a faster wheelchair.
Last week, in the neuro ward, I needed a sling and hoist to get from the bed to a wheelchair and back again. Now, I can manage to get from one to the other with a slider board, if they're at about the same level. So I can get up in the morning by myself, just about. Hard to put socks on, though.