The combination of a patient who does not speak well and a doctor who does not listen well is clearly a train wreck waiting to happen. No reason for fault finding, it is what it is. Part of my daily routine for some times has been to write in a journal eventful things. In an attempt to better communicate with the doctor my progression of CIDP, I’ve started tracking my symptoms in my journal. I am also logging because I want to have a perspective over time. The focus for me is usually “in the moment” which has the potential to distort reality.
Summary of condition for Dr Shabani Visit on February 15, 2018
1. Feet completely numb and pain level (5) at night.
2. Ankles shocking pain 7 when rotating during yoga session.
3. Tingling moved from back of legs and arms to front, back, back of neck, chest and roof of mouth.
4. Back pain, walking and breathing becomes labored after walking for 10 minutes or more.
Conditions after 3rd Steroid Treatment February 24th, 2018
1. Feet no longer hurt and began tingling again.
2. Walking much easier with distance.
3. Fatigue and labored breaking is worse (8).
4. Tingling is almost non-existent in legs and chest. Arms front and back a little less.
Condition after last Treatment February 26, 2018
1. Noticeable increase in feet and lower leg tingling (7). Arms and chest tingling is almost non-existent. Right calf seems to ache most of the time (3).
2. Severe fatigue and heavy breathing for a short time after treatment.
3. Assessment seems to be where I was when symptoms first started but in both legs – not just the right.
4. Noticeable weakness when raising arms for short time.
5. Slept little 1st and 2nd night. Rested well 3rd night and remaining nights.
6. 4th and 5th days seemed more high strung.
Condition log February 28, 2018
1. Left work early. Nausea started last night, generally not feeling well.
2. CIDP symptoms seem to be back at the same level – a little stronger with tingling
3. Feet and right leg up to knee hurts (4).
4. Tingling areas: Arms and shoulder (8), legs (5), feet (4), chest (3).
5. Overall weakness (6) most prominent in arms.
6. Breathing not labored all the time but seems to be tired chest, not lack of oxygen.
7. Back pain (3) from strain – possibly from change in how I walk.