Fantastic Day!

Since I last posted, I have been hard at work painting my house.

Tuesday I painted and had a pretty good day. Wednesday I painted and was struggling. Almost fell off ladders and stools. I had to lie down on the cold tile floor for a while, which helped. I think I got too warm, and maybe it was a little humid. Yesterday I took a day off of painting. I started off okay but quickly went downhill--still worn out from all that painting! Today I painted all day (all day!) and had the best day I have had in a long time. I felt at least 80% normal. Maybe 90%. :)

And my shot was not very painful! I took a three-minute break to take care of business and was back to painting.

I am really wondering if I might be on daclizumab. I certainly would not expect Avonex to make me feel better. And this dramatic turnaround is probably not completely due to PT. Speaking of PT, I went yesterday and wow, what a difference from the last time I went, which was one week ago. The bike still stunk, but the treadmill was so much easier. I felt like I could have gone longer, whereas normally I am pushing myself even to get on it.

I am so grateful to have more energy.

The only thing that was a bummer today was my horrible dry mouth. Still a problem.

Sensory:

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

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

Motor:
-Walking: 0
-Sore muscles: 2

-Spasticity: 2
-Weak muscles: 3

-Endurance: 2

-Fine motor: 2, because of my darn tremor! It acted up in the morning and then again in the evening (after I took a shower--warmth is definitely a factor). Left worse than right.

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

General:
-Fatigue: 1
-Balance: 0

-Sleep: 0

-Bladder: 1
-Proprioception: 0
-Swallowing: 0? (Didn't pay attention)
-A: 0
-B: 3

Emotions: Happy, I guess. I did not mind painting, and I was grateful for friends who helped.

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.

Good Day

I had a relaxing, boring day. That was okay, because I needed to rest. I read a book for a while, which I was doing for a friend--she asked me to read and summarize the first three chapters, so she could teach them to her students. It was an interesting book, and I was happy to help her.

Then I went to a neighborhood bakery and the grocery store BY MYSELF, walked all over that grocery store, and came back still functional. Yeah! I am having trouble getting my butt out of bed in the mornings, but once I am up, I have had more energy the last few days. The mornings have been particularly good.

Mornings have been pretty good for pain, as in not more than level 6/7. Unfortunately the pain increases in the afternoons and is pretty bad in the evenings. Today was no exception. I took half a Vicodin (250 mg) around 2:00, and I took a whole one at 7:00. I am still trying to decide how much it helps. Maybe some. But I wonder if it can give you back pain. Maybe that is coincidence.

I had the bad dry mouth again today, along with the sour taste. Yuck. I did see that on the amitriptyline side effect list. I also have pain on the roof of my mouth, like I scraped it. But I am pretty sure I did not. I guess I will have to see if it still hurts tomorrow.

Actually, my mouth is not the only thing that is dry. All of my mucous membranes are. I have not noticed my eyes getting dry, though, which I am grateful for.

That amitriptyline sure does make me tired. I was wide awake, but I took that medication about 45 minutes ago and am having trouble keeping my eyes open. It came on pretty suddenly.

After breakfast, I planned to see how long I could go without food, to see if I became hungry, but I ended up eating lunch with my friend. And dinner. Maybe I will try again tomorrow. I definitely had trouble feeling full. Reflux=full. Shortly after eating, I feel bloated, which stinks. But it is not a "full" feeling, more like a gassy feeling--big stomach.

Sensory:

-Pins and needles: 8
-Tingles: 0
-Dysesthetic pain: 9
-Paresthesias: 9, painful electricity, was bad sometimes in my lower body, and it was moderately severe in my tongue sometimes

-Numbness: 3, mouth issues--lips and tongue. Parts of feet, as always. And my left fingertips are getting worse.
-Vision: 3, it seems like my radius of clear vision has expanding--it was about 6 feet, but this morning it was more like 20 feet. It worsened again the afternoon but it still not as bad as it was at its worst. The same thing happened yesterday: better in the morning (even better than today) and worse later on.
-Nerve pain: 7
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 7, gosh my upper arm really hurt sometimes. I got the shot yesterday in that area, but the shot was just under the skin. I do not see why that should cause pain. But it does not hurt now--thanks, Vicodin. My leg muscles also have been sore sometimes.
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 5

Cognitive:
-Processing: 0
-Memory: 0, I remembered what I needed from the grocery store, without writing it down! I needed three things.
-Attention: 0
-Confusion: 0

General:
-Fatigue: 2
-Balance: 2
-Sleep: 0
-Bladder: 0, I am having some issues in the mornings, which I attribute to amitriptyline, but then I am fine all day.
-Proprioception: 1
-Swallowing: 0
-A: 2
-B: 0

Emotions: I think all the pain stresses me out sometimes. Severe pain is just so draining.

Shots and Pain

Today I had my monthly visit at the MS Center. This was a short visit, just an hour with Alyssa--vitals, shot, bloodwork, medication update, vitals, making copies of my log book. I keep a log of the shots I do at home, with pain levels before and after the shot. It is not a big deal.

My blood pressure was 133/80 and pulse 80, but I was chatting with Alyssa at the time. Then it was 120/62 and pulse 75. That is still higher than normal for me, but that is what it has been the last two months whenever I go to the doctor. I hope it is not really increasing, that I am just nervous to be there.

My vein ran dry after about five tubes of blood, and I still had six or seven more. Then she had trouble getting another vein. Ugh. The needle sticks did not hurt very much, though. I asked Alyssa to print my labs from the fall, which she was kind enough to do. That had my Vitamin D, calcium, etc.

The subcutaneous shot with the daclizumab/placebo STUNG again. Yeowch. I would take the bloodwork over that shot any day.

I did my own shot at home, and it went fine. I remembered to pull the skin taut. It hurt a little, and then it spurted some blood when I took the needle out. That surprised me. I must have nicked a little blood vessel. I put pressure on it, and it was fine.

My mouth had been so dry today. All of my mucous membranes, really, but my mouth was the one that bothered me. I suspect the amitriptyline.

I had a great morning, and an alright afternoon, but the evening has been pretty bad. Severe pain in my butt, legs, and feet. Oh my goodness. So bad. And in my tongue! The pain in my lower body has often been more like electricity than freezing/burning. It is bad either way. Oh, and the pins and needles get in there. The three sensations morph and blend with each other.

One thing that is worrying me a bit is that I seem to have lost the ability to feel full. I eat and eat, and I stop when I realize that I have eaten way more than I typically would. I wonder why I do not feel full. It gets to where my stomach feels huge and I even (grossness warning) reflux up some food, yet I do not feel full! I do not like this at all. I think it has been going on for several days now... maybe since Monday. I seem to recall eating a lot for lunch that day. I really hope this is related to the steroids, not MS. I want it to go away. I also do not think I am as good at tasting things and detecting temperature with my tongue--I am sure that is because of the numbness and pain.

So far my side effects are ok from the shots. I guess. I feel hot, but my temperature is normal. I was very achy for a while, but it got better. That was 30-60 minutes after my IM shot, so probably too early for that to be the reason. I guess I am still achy, now that I am attending to it. And I started feeling really sick around 5:00. That was before I did my IM shot.

Sensory:

-Pins and needles: 8
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 9, the electricity

-Numbness: 3
-Vision: 4, it was a lot better this morning, got worse again in the late afternoon. I am very hopeful for tomorrow.
-Nerve pain: 7
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 7, my upper arm really hurts where I had my subcu shot. And my legs, with the spasticity. But I had little pain this morning.
-Fine motor: 2
-Weak muscles: 5
-Spasticity: 6

Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 2

General:
-Fatigue: 6, but I would probably say 3/4 until early afternoon. Later in the afternoon and all evening it has been more like 7/8.
-Balance: 2
-Sleep: 0
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 2
-B: 0

Emotions: Nothing to talk about. Maybe a little irritable.