Not Getting Worse

I seem to be holding steady. My walking was worse today, but pain and everything else remained constant.

I had a very painful day on Wednesday. And so much fatigue. I was ready for a nap by 10:00. I emailed the clinical study team and spoke with Alyssa, who asked if I want to come in on Monday. Honestly, no, and that was what I told her. At this point, I would decline steroids, so there is no point in going in before my previously-scheduled appointment next Friday. Alyssa asked me to contact them again today (i.e. two days later) to confirm that I really do not want to come in on Monday.

Thursday was overall my best day this week, with not much pain and even less fatigue. But my quads got all spasticitized (tm ;) again.

Today was worse again. Boo. But I still told Alyssa that I do not want to come in. I did want assistance with managing my nerve pain--the burning skin has gotten pretty bad. I was advised to increase my desipramine. Fingers crossed that the dry mouth does not increase with the dose. And fingers crossed that this helps, because sometimes I am ready to tear my skin off.

Sensory:

-Pins and needles: 3
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 4

-Numbness: 2
-Vision: 0
-Nerve pain: 6
-Hearing: 1

Motor:
-Walking: 6, slow, sometimes needing to hold on to someone. Feeling like my legs would buckle--weakness. But okay for short distances.
-Sore muscles: 4, quads mostly

-Spasticity: 4, quads
-Weak muscles: 6

-Endurance: 6

-Fine motor: 0

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 3
-Balance: 0, not counting in the dark

-Vertigo: 0

-Sleep: 6, I had to get up super early this morning.. 5:45!

-Bladder: 1, from medication
-Proprioception: 0?
-Swallowing: 0
-A: 0
-B: 0

Emotions: Fine. I had a good day.