Getting Forgetful

I forgot to blog the last two days!

Tuesday was one of the more painful days I have had. Burning pain in my skin. But spasticity was not bad. I was pretty darned tired. And I had PT.

Yesterday my pain was low. It was wonderful! I got some anaerobic exercise in the morning. And I had PT. PT has been good; I have not been kept waiting too much. Yesterday my left knee was bugging me again, and I had some trouble walking on the treadmill. Jackie the PT checked it out and found that the problem was not with the joint. My spastic quad muscles were not allowing my knee to work properly.

Today I had another less pain again. I was busy at work and came home pretty tired. I made myself a bit of dinner--boiled some ravioli--and totally wore myself out. I have been resting on the couch all evening and have no energy. But I was walking really well all day until I ran out of steam.

I had two weird forgetful moments today. A coworker told me that she was going to get her blood pressure checked, explaining that it had been up and down all day. A few minutes later, I looked around to find that she had vanished. I had absolutely no recollection of our earlier conversation and was really wondering where she was. I let it go. After five or ten minutes or working and idly wondering (as it is highly unusual for her to be gone), I asked another coworker where she was. Then I instantly remembered where she had gone.

The other example is that I had pills in my pocket. At first I thought they were my mid-afternoon dose of gabapentin, but then I realized that they were my breakfast pills, which I had forgotten to take. I took them around lunch time. Several hours later, as I was packing my things to leave, I remembered the pills and realized that I had not taken my mid-afternoon dose of gabapentin. I felt in my pocket for the three gabapentin pills, only to find that my pocket was empty. I panicked for a minute, wondering where the pills might have dropped out. During a meeting? Maybe I should look in the conference room. First I looked around my desk area. A few seconds into my search, I remembered that I had taken the pills in my pocket--and they were not gabapentin.

These little lapses in short-term memory happen to me all the time. They make me confused sometimes.

My dry mouth has been pretty bad. I emailed Dr. Rick today to let him know that I am throwing in the towel on amitriptyline. He is going to call in a prescription for another tricyclic anti-depressant, desipramine. I wonder if my pain will increase again when I stop taking the amtriptyline. I am not sure if it is helping or if my pain just happened to decrease yesterday and today.

I ordered an exercise ball and foam roller, which I am using in my PT sessions. I can use them for exercises at home.

Sensory:

-Pins and needles: 3
-Tingles: 0
-Dysesthetic pain: 5
-Paresthesias: 6, electricity crackling through my right foot (mainly)

-Numbness: 3, still having tongue issues, mild fingertip issues, and of course the feet as always
-Vision: 2, up and down but generally better
-Nerve pain: 4
-Hearing: 1, sometimes I think I hear sirens... weird

Motor:
-Walking: 1 daytime, 5 evening
-Sore muscles: 1
-Fine motor: 3, tremor bugging me
-Weak muscles: 4
-Spasticity: 1

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

General:
-Fatigue: 4 day, 8 evening--"can't hold my head up" tired
-Balance: 2
-Sleep: 0
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: Fine. I handled a potentially stressful meeting well. But then I almost cried at a friend's email mentioning my MS and how you would never know I am in a lot of pain. That I hide it well. That makes two people who have said that to me today, that I hide it well. 

Casseroles Are Good, Friendship Is Better

Today at church, one lesson was about a man who we all knew of but did not really know. No one realized how kind, loving, and generous he was. And no one realized that he had had some major health issues--he was bedridden for four years. Everyone gave up on him except his wife. The point was made that as good as a ward may be, people with chronic health conditions end up feeling alone.

So true. This is exactly the issue I struggle with. People are great with acute problems, but they do not have the stamina for someone with a problem that does not let up.

My MS is not going anywhere. It is only getting worse. I am not going to complain to people; I do not even bring it up. But chances are I am in pain and feeling horrible every time you see me. Yes, always. Imagine how that feels.

They were talking about how casseroles are great, but people with chronic illnesses need other things. Someone to talk to, etc. This is very true!! But it is also true that casseroles help, too, at least for me. I am so tired every day that I certainly am not cooking casseroles. I would be eating TV dinners every day if someone did not cook for me.

I took Vicodin again today and tolerated it well. It might help a little, but not much.

I felt sort of hungry after 7-8 hours of not eating. More like nauseated than really hungry. Still not feeling full when I have eaten a lot. Afterward my stomach feels big and bloated, but it takes time to notice that. So I have to monitor what I eat visually instead of relying on feeling full, like usual.

I became dizzy a few times today, most notably during the third hour of church. Oh my goodness, I was so exhausted after church today. I had no help with interpreting. I interpreted the first and third hours. And of course I did choir before church. And got set apart after church (after waiting around for 20 minutes). Utter exhaustion. I could barely walk out of there.

I emailed Dr. Rick about the dry mouth problem. Today it was dry again, maybe a tiny bit better than yesterday. Less sour, for sure. But I woke up with the roof of my mouth feeling quite raw, and that has continued. It hurt to take pills and to eat. Dr. Rick said that is likely from the amitriptyline, and we can try something else.

I also mentioned the can't feel hungry, can't feel full problem. He said he does not know what to think about that. At least he is honest. I like that.

Sensory:

-Pins and needles: 7
-Tingles: 0
-Dysesthetic pain: 9
-Paresthesias: 8

-Numbness: 3
-Vision: 3, good morning but then it got worse. Fluctuating. Not as bad as it was though.
-Nerve pain: 6
-Hearing: 1

Motor:
-Walking: 2
-Sore muscles: 4
-Fine motor: 3, dropping stuff, poor writing, poor fingerspelling
-Weak muscles: 4
-Spasticity: 5

Cognitive:
-Processing: 2
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 7, and I think the dizziness made this worse
-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: 0
-B: 0

Emotions: I almost cried during the part of the lesson about people with chronic illnesses. I tried to be very cerebral about it so as not to cry--success. Then I almost cried when we were waiting to be set apart. They were wasting time, and I was so exhausted. I was past my limit. Then I did cry a bit during my setting apart. That's ok. I was irritable a few times when I was dizzy and had trouble focusing and understanding things, especially in my second language.

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.

Steroid Wrap-Up

I began the steroids on a Wednesday night, which will be Day 1, and I took them with dinner each night afterward, as directed: 500 mg days 1-5, 60 mg days 6-7, 50 mg days 8-9, etc. The taper is down 10 mg every two days.

On my second day at 30 mg, my neurologist told me to go straight to 10 mg the next day. This was due to my blurred vision.

Pros:
-Painful paresthesias in right leg greatly decreased
-Pain and numbness in face/tongue gone
-Decreased spasticity in both legs, especially right (although on day 8 it increased again)
-Walking better? (we'll see when the steroids stop affecting my joints)
-More energy after the steroid fatigue wears off and I am able to sleep again? I do have times where my energy level is okay, which I did not have during the week before I began steroids. Day 10 was much better. Sick afternoon of day 11, but that may have been from Avonex. Better days after 12

Cons:

-Swollen, painful joints began day 4, worse days 5-6, better but continuing through day 11, minimal days 12-15

-Blurred vision began day 3, worsened day 4, worst days 5-15

-Vertigo increased (had some, became worse) days 3-7, lessened days 8-10, minimal days 11-12, bad day 13, better but still happening days 14-15

-Fatigue days 1-9

-Dizziness began day 3, better day 10, worse again day 13, better but still happening days 14-15

-Difficulty sleeping (4-7 hours), days 1-13

-Thinking more slowly sometimes through day 9

-Difficulty urinating days 3-6
-Dryness? Hands wrinkled up day 3, struggled off and on through day 13

-Headaches, days 2-6

-Shakiness sometimes began day 3 or 4, gone day 10

-Diarrhea days 2-6, took something for it every day

-Puffy face showed up day 6

-Acne showed up day 7, worsened day 9, again day 14

-Weight gain of about 3 pounds

-Indigestion/GERD increased days 2-7, back to normal day 8

-Muscle pains increased daily from day 6ish

-New freezing pain in my upper sciatic nerve--right and left sides. Days 7-9.

-New tingling along the left side of my tongue on day 6, gone, back on day 10, gone

-New pain on left side of face on day 6 only
-New seminumbness on top of right foot began on day 7
-New spasticity in shoulders/upper arms began on day 6, worsened daily through day 11, a little better days 12 and 13
-New numb strip across forehead on day 12
-New freezing pain in palms on day 12
-Numbness back in tongue on day 13
-New burning/freezing pain in right foot day 12? or 13
-New burning/freezing pain on outside of left hip day 13 bad but I think it showed up day 11
-New burning pain in lower back day 13

As to the taper, I suppose I will not know what it prevented, if anything. Obviously I cannot tell what might have happened. So far I have not had any new MS problems when coming off the steroids, except for that upper sciatic nerve pain, which happened two nights in a row (days 8 and 9). And it was significant pain. I do not know what to think about the taper. Is it just prolonging the nasty side effects of the steroids?

So let's talk more about this blood sugar thing. From what I am finding, several problems on the cons list could be attributed to this. Let's redo the cons list, marking symptoms of high blood glucose symptoms in red. And I will mark common side effects of steroids in green. Debbie was telling me about the crashes in blood sugar, so I will go ahead and mark symptoms of low blood glucose, just to see. I will mark them in blue.

Cons:

-Swollen, painful joints began day 4, worse days 5-6, better but continuing through day 10 (so far)

-Blurred vision began day 3, worsened day 4, worst days 5-10

-Vertigo increased (had some, became worse) days 3-7, lessened days 8-10

-Fatigue days 1-9

-Dizziness began day 3

-Difficulty sleeping (4-7 hours), days 1-9

-Thinking more slowly sometimes

-Difficulty urinating days 3-6
-Dryness? Hands wrinkled up day 3-?

-Headaches, days 2-6

-Shakiness sometimes began day 3 or 4

-Diarrhea days 2-6, took something for it every day

-Puffy face showed up day 6

-Acne showed up day 7, worsened day 9

-Weight gain of about 3 pounds

-Indigestion/GERD increased days 2-7, back to normal day 8

-Muscle pains increased daily from day 6ish

-New freezing pain in my upper sciatic nerve--right and left sides. Days 7-9

-New tingling along the left side of my tongue on day 6, gone, back on day 10
-New seminumbness on top of right foot began on day 7

I split the items between two colors if the symptoms were on both lists. How odd that high and low blood glucose can cause some of the same symptoms. It seems like I have as many symptoms of low blood sugar as high. But from what Debbie taught me, the body can vacillate between the two extremes.

Maybe I have dizziness and shakiness sometimes because that is when my blood sugar is crashing. And fatigue. Hm. I am really looking forward to that a1c test. I would love to have steroids as a tool I can use in the future. Sacrificing two weeks to nasty side effects is pretty tough, but if I could alleviate some of them by controlling my blood sugar, that would be great. I would probably be willing to try it again. I am pretty motivated not to accumulate disability.

And just for the record, I remember having many of these same symptoms when I did IV Solu-Medrol (steroids) in September. The main differences between that time and this one are that my blurred vision and dizziness are worse this time, and my painful joints are not as severe this time (I got to the point where I could not bear weight on my left knee last time). Also, I am wondering if that tongue tingling and face pain was about to be the beginning of a rebound relapse, which the steroids cut short. The daily central pain from my left foot is a remnant of the rebound relapse I had last time.

Good PT Session

I was not in that horrible pain every minute of the day, but often. Pretty much all afternoon, and the evening was almost unbearable. I went to a church thing and SUFFERED sitting for an hour and a half. I think my eyes were crossed from the pain. I kept losing awareness of what was going on, needing to bring myself back to what was being said. It is hard to pay attention, like the pain just takes over. I was wondering how I will handle church on Sunday--three hours of sitting.

I went to PT today. Much better than last time! Last time I was there for two hours, and a lot of that time was spent waiting around for the PT to bounce back to me from other patients. I came home and cried--exhaustion. Today, my visit was about an hour, and a lot of that time was actually spent with the PT. She showed me exercises on a balance ball and foam roll thing, as well as hamstring stretches to reduce spasticity when I feel it kicking in.

I guess I handled the amitriptyline well today, because I was not overly tired. In fact, my fatigue was pretty good. I did have some dizziness and vertigo in the mid-morning and again in the afternoon. Still questioning blood sugar or something related to food, honestly.

Sensory:

-Pins and needles: 7, mainly feet
-Tingles: 0
-Dysesthetic pain: 9, horrible, horrible. Legs mostly, also tongue and a bit on bottom lip, right side
-Paresthesias: 8, sometimes the dysesthetic (freezing/burning) pain turned to more of a feeling of electricity. Shocking! And I had the weird band feeling on my forehead again, which is a mild problem and would have rated paresthesias at a 1 on its own.

Numbness: 3
-Vision: 4, still no change
-Nerve pain: 7
-Hearing: 1

Motor:
-Walking: 1
-Sore muscles: 4
-Fine motor: 3
-Weak muscles: 4
-Spasticity: 4

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 2, worse when pain was severe
-Confusion: 1

General:
-Fatigue: 4
-Balance: 2
-Sleep: 0, got 9 hours
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 4
-B: 0

Emotions: Fine. I was not happy about all the pain, but I was still happy in general.

Hung Over

I was so sick all day. Dizzy, weak... just not a good day. Hopefully tomorrow is better. I took the amitriptyline tonight, but absolutely no Vicodin all day. I did have quite a bit of pain, but I need to know which medication is making me sick, and I chose to stick with the amitriptyline for now.

I also want to mention that I have had an odd pain in my left mid-upper back. It stabs then lets go. Sometimes a few times in a brief period of time, sometimes one and done. Hope it's not my kidney.

Oh, I forgot to mention that I no longer have temperature sensation in my feet. The ice-cold metal of the doctor's probe felt neutral or even warm to me yesterday. However, I can still feel pinpricks.

Sensory:

-Pins and needles: 7
-Tingles: 1
-Dysesthetic pain: 9, some in my tongue. :( Of course still in my feet and legs, back, thighs... yeah, it stunk. Sometimes the feeling of my clothing was unbearable. Like when you have a sunburn and you wear something with lace.
-Paresthesias: 1, I have a weird band on my forehead that I guess I will throw under paresthesias, because it doesn't seem to fit anywhere else. Sort of numb feeling, though-Numbness: 2, definitely having issues with my left fingertips, my tongue, and of course parts of my feet 
-Vision: 4, same old same old
-Nerve pain: 7
-Hearing: 1

Motor:
-Walking: 4, which I attribute to medication, not MS
-Sore muscles: 4
-Fine motor: 3
-Weak muscles: 5
-Spasticity: 4, backs of legs

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

General:
-Fatigue: 8 all day, but I felt great in the evening, more like 4 or 5
-Balance: 4, and again, I believe this was more medication than MS. I had been doing better with my balance the night before last--I did not need to hold onto things to walk to the bathroom. Last night not so much.
-Sleep: 0... uh... 10 hours... 10 and a half... It was so hard to get out of bed this morning!
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 2
-B: 0

Emotions: Irritable! Most of the day, I was irritable, but I was better in the evening. Actually, I perked up around 6:00 and was feeling much better in general. Less tired, not dizzy at all. Just pain. Whatever was affecting me wore off. Or the steroids kicked in! Today was the last day, and I only took 10 mg.