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. 

Weakling!

I was a weakling today. My body felt like jelly sometimes, just like yesterday. I hope I am not getting worse again. It seems like every time I celebrate something, I lose it.

I went skiing this evening and had a hard time. I tried a blue and took five breaks on the way down. At least no falls today. My muscles were sore and ready to give out, as if I had skied all day. This is marked worse than last week.

Dry mouth and sour taste from the desipramine are still bugging me, although sometimes it is fine. Seems like mornings are worst--well, I take the pill at bedtime. Also, I had several bad dreams last night.

Sensory:

-Pins and needles: 0
-Tingles: 0
-Dysesthetic pain: 4
-Paresthesias: 1

-Numbness: 3, sometimes my left big toe, partial numbness in my left foot
-Vision: 0-1
-Nerve pain: 1
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 1, not including skiing
-Fine motor: 0
-Weak muscles: 5
-Spasticity: 1, not including skiing

-Endurance: 6

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

General:
-Fatigue: 5
-Balance: 0
-Sleep: 0
-Bladder: 1
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: I was a bit dismayed and discouraged to be weaker and more tired again.

Getting Better!

I had another great, low-pain day. That is five in a row--I think I can officially say that the desipramine is working! I am so thankful.

I noticed today how much better I am moving. Walking, signing, everything.. much better.

Sensory:

-Pins and needles: 0
-Tingles: 0
-Dysesthetic pain: 2
-Paresthesias: 2, some weird electricity-ness in my legs, also that weird buzzy/pully feeling in my back. Paresthesias are just weird.

-Numbness: 2
-Vision: 0-2
-Nerve pain: 3
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 1
-Fine motor: 0
-Weak muscles: 1
-Spasticity: 0

-Endurance: 3

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

General:
-Fatigue: 3
-Balance: 0
-Sleep: 2, eight hours
-Bladder: 1 (medication)
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: Calm. Oh, I forgot to say that yesterday I brought up bad dreams with my shrink. I have had a few in the last couple of weeks. She wondered if the anti-depressants were causing them. I did not think my dose was high enough to have that kind of effect, but I guess it might be. It is high enough to help the pain and to cause side effects. 

Bad With the Good

Desipramine seems to be helping my pain, and that is fantastic. But it is not without its down sides. I think it is making my vision a little weird. In a different way than the steroids. Whatever, I can deal. It makes me struggle to pee in the mornings. OK, I can deal. Bad dreams. I am still sleeping enough, and it is not all night long, so I can deal. Some dry mouth. It is not fun, but it is better than when I was on amitriptyline, so I can deal. Side effects stink, but I can deal. The pain is worse than the side effects.

I am so happy that my pain has drastically decreased!

I realized that muscle weakness is one problem, but I also have a problem with endurance. I have regained a lot of strength. Before I could not list my laptop and now I can; before I struggled with grocery bags and now I can carry them. I am getting better at opening doors. Those are just a few examples. But endurance is still a problem. I can pick up something heavy, but my arms turn to jelly after a minute. I can stand for a few minutes, and then my legs turn to jelly. It is frustrating.

Sensory:

-Pins and needles: 0
-Tingles: 0
-Dysesthetic pain: 1
-Paresthesias: 2

-Numbness: 2
-Vision: 0-1
-Nerve pain: 3
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 1
-Fine motor: 0
-Weak muscles: 1
-Spasticity: 1
-Endurance: 4
Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 1

General:
-Fatigue: 2
-Balance: 0
-Sleep: 2, eight hours
-Bladder: 1 (medication)
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 7

Emotions: I had a good head shrinking session. It was emotional, as always, but sometimes the only way out is through, right, Alanis?

PT Wore Me Out!

I worked with a different PT today. I saw Jackie, and she introduced me to Shandi. Shandi had a different energy, and I liked her. I do not think she quite gets MS, though. She really wore me out. She kept me standing too long, and she did not give me enough breaks.

Also, I was on the treadmill a little long at the beginning of the session, but that was Jackie's fault--she wrote the warm up plan on my chart.

But honestly, I was worn out earlier. I guess I walked around too much at work. I got home and collapsed for about 30 minutes. I was feeling better then, and I felt okay when I got to PT. But I was probably easily worn out, since my little tank was not exactly full to begin with.

So... Shandi gave me a whole bunch of homework. She gave me an exercise plan with different stuff M/W/F and T/Th/Sa. We'll see.

But my pain was down. I wonder... Could it be? Could the desipramine be working already? It has only been three days.

Sensory:

-Pins and needles: 0
-Tingles: 1, left hand
-Dysesthetic pain: 6 in the evening, 0-1 day
-Paresthesias: 2

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

Motor:
-Walking: 2
-Sore muscles: 1
-Fine motor: 1
-Weak muscles: 6
-Spasticity: 1

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

General:
-Fatigue: 7
-Balance: 3
-Sleep: 2
-Bladder: 0
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: OK. I did shed a few "I'm exhausted" tears. Mostly I was just busy with work.