Made a PT Appointment

I made a PT appointment for next Wednesday; I will see a PT named Jackie. And I left a message for Dr. Holly, the neuropsych.


Sensory:
-Pins and needles: 3
-Tingles: 0
-Dysesthetic pain: 4
-Paresthesias: 2, just a handful of electric shocks. Actually, they are acting up right now--left hand and forearm
-Numbness: 2, the usual. I should say what that means: left baby toe area and lateral sides of both heels completely numb. Plus fingertips and tongue partially numb.
-Vision: 2, blurry off and on--definitely related to fatigue
-Nerve pain: 1
-Hearing: 0

Motor:
-Walking: 2
-Sore muscles: 2
-Fine motor: 3
-Weak muscles: 6, I had trouble cutting chicken with a fork--cutting with the grain of the meat! My right arm was too weak, so I used my left.
-Spasticity: 5

Cognitive:
-Processing: 2
-Memory: 3, many "what was I about to do?" moments
-Attention: 1
-Confusion: 2

General:
-Fatigue: 4
-Balance: 1
-Sleep: 2 (still have 9 hours as the standard and one point deducted for each half hour less, plus deductions for interrupted sleep--not sure how else to rate it)
-Bladder: 1
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 6, took 2 pills

Emotions: Fine. Excited about PT. Hopeful that I get in to see Dr. Holly before next century.

Definitely on Avonex

Today was hard. I became tired so easily, and my leg muscles were weak, especially in my right quads.

In addition to the pain and whatever else I struggled with today, I just felt SICK. I think it was the fatigue. Fatigue makes such a difference on how I feel.

In the early afternoon, I spoke with Alyssa from Dr. Rick's office (the clinical study). She commented that my symptoms on Friday night were classic Avonex symptoms. I knew that, but the confirmation was disappointing. The last of my hope for the new drug was extinguished. So much for a double-blind study, by the way.

Alyssa agreed that my symptoms yesterday were not likely related to the injections on Friday. I should see how things go and let them know how I feel at the end of the week. But if I get worse, I should let them know.

Sensory:
-Pins and needles: 3
-Tingles: 1
-Dysesthetic pain: 4
-Paresthesias: 4, I had some electric shocks this morning, not as many this afternoon.
-Numbness: 2, the usual
-Vision: 1, blurry off and on
-Nerve pain: 1
-Hearing: 0

Motor:
-Walking: 4
-Sore muscles: 6
-Fine motor: 2
-Weak muscles: 6, stairs were very difficult, as was getting up, walking
-Spasticity: 5, right leg

Cognitive:
-Processing: 2
-Memory: 2
-Attention: 0
-Confusion: 1

General:
-Fatigue: 7
-Balance: 1
-Sleep: 3
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 0
-B: 6

Emotions: Pretty close to the surface all day. I am often more emotional when I feel worse. I collapsed in tears after work. I cried because I was over-tired, and I cried because I was processing the fact that I am definitely in the Avonex group. I allowed myself to feel disappointed and let down that I am not on daclizumab, as I had hoped. But I also did some self talk or something--not sure what it is called. Thinking that if I were not in the study, I probably would have chosen Avonex over the other three drugs I was offered. It was not what I wanted, but I would have been stuck with it. At least I have the monthly monitoring and free care that the study offers. I am still convinced that this is all part of Heavenly Father's plan for me. I told Alyssa something along those lines on Friday, that I guess MS was something I needed to make me a better person.

New Symptoms :(

Today was rough, for sure. I had new symptoms. Or familiar symptoms in new areas.

After doing a crappy job of interpreting for an hour, I had to stop and ask someone else to take over. I hoped to relieve her after an hour of rest, but I was not rested after the rest!

I emailed my nurse to tell her about the new symptoms.

Sensory:
-Pins and needles: 4, both feet but mostly right; also right lower leg (lateral)
-Tingles: 0
-Dysesthetic pain: 2
-Paresthesias: 7, I had nasty electric shocks on the bottoms of my feet, as well as my right lower leg (running down the lateral side, toward the front) and right arm/hand--also lateral. (NEW) Oh, and in my right upper leg, beginning as we speak--down the lateral side/back of my thigh. These problems vanish after I take gabapentin, only to reappear about 4-5 hours later. So I have four good hours and three bad ones.
-Numbness: 4, increased on the tips of my left index finger and thumb. Also on my right heel, top of foot, medial lower leg, and around knee--all new except heel.
-Vision: 1, blurry when I am tired or have focused on something close (like reading or looking at my phone)
-Nerve pain: 0
-Hearing: 0

Motor:
-Walking: 2
-Sore muscles: 5, my left calf, lateral half, was killing me for a while this afternoon. Spasticity, I think.
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 6, in my right leg, upper and lower, lateral side--basically down the whole side of my leg

Cognitive:
-Processing: 2
-Memory: 2
-Attention: 1
-Confusion: 0

General:
-Fatigue: 7
-Balance: 1
-Sleep: 1
-Bladder: 1
-Proprioception: 0
-Swallowing: 1, food sticking in back of throat, difficulty with thin liquids. Mild, I guess.
-A: 0
-B: 1

Emotions: I cried this morning. I cried at church. Twice. I nearly cried several more times at church. It really gets to me when I cannot do "my job."

Managing Avonex Side Effects

I did some google research on managing Avonex side effects. Avonex is what I think I am injecting IM every week. The side effects are those awful "flu-like" (more like hot/cold, painful hell) symptoms. Since I will be doing the IM injections every week for the foreseeable future, I want to find a way to manage the side effects.

This is what I found:

- Do the injection in the early evening or right before bedtime, depending on when the symptoms tend to hit you.

- Hydration helps tons. One person said to begin the increased hydration the day before and continue through the day after the injection.

- Gatorade the next morning might help.

- Benadryl might help. (I think they mean help you sleep through the worst of it.)

- Take an Ambien. (Several people liked this; some felt it was not good or the side effects were not worth it.)

- Naproxen might help more than ibuprofen.

- You cannot take ibuprofen, naproxen, and aspirin together (not all three, and not even two in any combination).

- You can take acetaminophen with any one of the three pain relievers above.

- The maximum daily dosage of acetaminophen is 4 grams.

-The maximum daily dose of naproxen is 1,500 mg; 1,650 for naproxen sodium.

-The maximum daily dosage of aspirin is 8 grams.

-The maximum daily dosage of ibuprofen is 3,200 mg.

- Take higher doses (not to exceed the maximum daily amount) of pain relievers.

- Taking two pain relievers together helps.

- Start with a heavy dose of a pain reliever (especially ibuprofen or naproxen) half an hour before the injection.

- Continue dosing with pain relievers for 24 hours.

- Start with 1/4 dose of Avonex the first two weeks, 1/2 dose the next two weeks, 3/4 dose the next two weeks, and on the 7th week the full dose.


Whew. That is a lot. Seems like good advice, though. Basically, I need to treat this like a flu that I am bringing on. I can predict the course of it, if it goes similarly to last time.

I had about 1/2 of the Avonex dose on Friday, and I was going to take a full dose this Friday. Now I am going to email the nurse and ask if I can take a half dose again. I need to email her anyway to tell her about the new symptoms I had today.

Since the symptoms began about four hours after the injection and became horrible about six hours after the injection, I will probably do it around 6:00 pm next time. The worst symptoms lasted until 13 hours after the injection, so that would be until 7:00 am. Hm. Maybe I will do the shot at 5:00.

I will drink as much as possible before and after the injection. That cannot hurt anyway. I will consider the Gatorade suggestion. I hate to drink the chemicals and high fructose corn syrup, though. I wonder if there is a more natural alternative.

I think I will try naproxen, since ibuprofen did not help (although I probably did not take enough--I did not expect it to be that bad). I will go with 750 mg of naproxen sodium at 4:30 pm, the shot at 5:00 pm, and 1,000 mg of acetaminophen at 5:30, then another 1,000 mg of acetaminophen at 9:30. In bed by 10:00.

I do not want to use Bendryl, because I have had weird reactions to it before. Sometimes it makes me wired and keeps me awake; sometimes it puts me right to sleep, and once it made my legs twitch uncontrollably for half an hour. I do have a couple of Ambien left from the nutty Dr. Gabby days, but I think I will pass on that.

Maybe I will drink some chicken broth in the evening.

If I wake up during the night, I will take 1,000 mg more of acetaminophen after 1:30 am and  375 or 750 mg of naproxen (depending on how I am feeling) after 4:30 am. I will have the medications on my night stand; last time I did not have anything ready when I woke up sweating and in pain.

And I will try to drink as much as possible! OK, so that is the plan. We will see how it goes on Friday.

Symptom Tracking, Irritability

Sensory:

-Pins and needles: 2, right foot/leg

-Tingles: 0

-Dysesthetic pain: 0

-Paresthesias: 0

-Numbness: 1

-Vision: 2, just blurry

-Nerve pain: 0

-Hearing: 1, fuzzy buzzy

Motor:

-Walking: 1

-Sore muscles: 0

-Fine motor: 1

-Weak muscles: 4

-Spasticity: 2

Cognitive:

-Processing: 1

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 6, probably a combination of not sleeping well, the IM injection side effects, and regular MS stuff

-Balance: 0

-Sleep: 8

-Bladder: 0, I think

-Proprioception: 0

-Swallowing: 1

-A: 0

-B: 1

Emotions: OK for the most part. I saw my shrink today. I brought up my irritability. I need to figure out how to reduce stress and relax. She asked how I relax, and I honestly had no idea. I brought up skiing. I cannot exactly go skiing every day. I really do not know, so I will need to work on that. It is complicated.

I later remembered that I often become irritable when people make things harder for me, physically or cognitively. Stepping in front of me, interrupting me, asking me to do something when I am tired, etc. Whether they are aware or not does not seem to make a difference. It could be people I know or strangers. That makes me irritable very quickly. That is one reason I loved using my cane the day I tried it out; people accommodated me and I did not become irritable at all. I was able to enjoy shopping like I used to.

Flu Like Symptoms? Some Kind of Awful Flu!

I took ibuprofen around 2:00, as directed, and I did the IM injection around 2:45. I was feeling tired, low energy as I left around 5:00, but I wondered if that was just from the long day.

Around 7:00, I began feeling worse. I just could not get warm, and I was shaking. It did not help that our furnace was not working. But the space heater was cutting it for everyone except me.

The feeling of being cold-to-the-bone continued even after the heating and air guy fixed the furnace around 8:30. I felt kind of flushed at the same time (although I chalked that up to being annoyed with the heating and air guy). I took more ibuprofen.

Around 9:00, I was hit with intense pain throughout my body. Muscles, bones, joints--it was hard to say, because I was just overwhelmed with pain. I was hot and cold at the same time. I took my temperature around 9:30, and it was 100.6. I took it again. And again. Darn it, I really had a fever, despite taking ibuprofen. I continued to feel worse, although it came in waves. It was truly awful. I took one more ibuprofen.

I went to bed at 9:45, but I had trouble falling asleep. I tried to be as still as possible, which seemed to help the pain. Or maybe the medication was helping.

I woke up every 20 minutes or so, sweating, in pain, feverish... just suffering. But I kept falling back asleep. At 4:15 I woke up feeling better. Not great, but noticeably better. I went back to sleep and only woke up every hour. 

These are classic side effects of Avonex, so now I think I am randomized into that group. I must be receiving a placebo instead of the DAC HYP. That is so disappointing. But I do not see how they could create those effects from a placebo.

I feel better today. Run down, but so much better than yesterday. I want to curl up and go to sleep, but we have friends coming over at 7:00. It is so hard for life and MS to work together.

Oh, the bad news? I am in for 4-6 months of horrible Friday nights. That is how long it generally takes for the side effects to diminish, if they are going to diminish.

I Gave Myself a Shot!

Yesterday I planned to write about my clinic visit, but I became too sick. Feeling better now.

Alyssa took so much blood from me yesterday! I believe it was 13 tubes. Things were going well until the last two. My vein was getting tapped out, and Alyssa had to move the needle around. Not enjoyable, but it was not terrible--I have had worse.

I had long series of tests, including one that I totally rocked (symbols representing number 1-9, you had to say what the symbols on the page represented using the key at the top--I memorized the key) and one that I totally bombed (a man saying numbers a couple of seconds apart--you had to add the last two numbers presented, like 1 4 (5) 6 (10) 1 (7) etc.). I also rocked the 25-foot walk, and I think I did a little worse than before on the peg test but probably still normal. I think I did fine on the vision test, but they did not tell me. A different research tech did these tests with me, and I like her a lot better than Michelle. Her name was Erica. She gave me a hug and said she would be praying for me.

I cried a little when Dr. Andy asked about cognition. He is so sweet and seems genuinely interested in how my symptoms impact me in the real world. He wanted to make sure that I am using what strategies I know, which I mostly am. He made me tear up again as he was leaving, when he said to hang in there, that he would be pulling for me and hoping I respond well to the medication.

I asked for a neuropsychological evaluation, which I will get. Apparently there is a neuropsych who was an SLP before going to medical school. Awesome! That is Dr. Holly. Hopefully I can see her, although there probably will be a wait.

And I asked for PT, which Dr. Rick did not seem inclined to write a prescription for. I am not sure I need one anyway. But I explained why I want PT, and he accepted that and wrote the script. Now I need to figure out whom to see. I emailed a PT I know who works with children; maybe she knows someone who works with adults.

Alyssa, the nurse, gave me the subcutaneous (under the skin, like diabetics) injection. Again, the subcu injection could be DAC HYP (daclizumab, the excellent-in-Phase 2-experiemental drug) or placebo. The intramuscular (IM) injection could be Avonex or placebo. I take both, but one is placebo and one is a real drug. I do not know which, and my clinic staff do not know which; the study is double blind. I am known by a number to the place controlling the study and sending out the meds/placebos.

So I go the subcu injection, which was fine until she pushed the medication in. It stung!! It stung for less than five minutes, but yowtch. Reminded me of when I have had the numbing medication injected into my face or neck to remove moles. This just lasted a little longer, since there was no nice numbness following it.

Then Alyssa taught me how to give myself the IM injection. The needle was long! I mean, not super long. It was 1.25 inches. It was not hard to understand how to give the injection: straight in, to the hilt. I practiced twice on a dummy skin thing. Wash hands, clean site with alcohol, open gauze, open needle package, pop the top off the syringe thing, screw the needle on, hold the skin taut (which Alyssa called taunt), push the needle in at a 90 degree angle, push the plunger down slowly, pull the needle straight out, put the gauze on, apply a band-aid.

Alyssa showed me a few ways to hold the syringe, and I chose what seemed like it would work for me. She showed me how to select a site. After practicing twice, I did not see what more I could gain from continued practice. I said I was ready for the real thing.

As I held the needle over my thigh, I began to move it downward, but something stopped me about three inches from my skin. Of course I stopped me. But it did not feel like I tried to stop. I had a little talk with myself. This is not going to get easier if I wait. Just do it. Go. Go. Go now. And then I did.

Just as Alyssa began to say that it was okay to take my time, I pushed the needle in. Quickly but not roughly. I wanted to stop or pull it back out, but thank goodness my intellect took over. That would have only made it worse. Even when I felt it go through different levels of resistance and I had a moment of panic wondering what I had hit, I kept pushing. Then it stopped itself. I pushed the plunger down slowly. I checked with Alyssa that I had injected it all and could remove the needle. I pulled it straight out. I quickly put the gauze pad over it. Then I cried.

Alyssa was exclaiming over my perfect technique and how she should have videotaped that, how she had never seen a patient give a perfect injection the first time. She stopped when she noticed me crying. She got me gauze to use as a tissue and rubbed my back, trying to get me to talk to her about it. I did talk a little.

I did not really know why I cried. But I told her that I am overwhelmed by having MS, that I am not finished grieving it, that I go through different stages. Lately I have been in more of a denial phase, saying that I do not want to have MS, that maybe it is a mistake, etc. She said that it is okay to feel whatever I feel, that I am doing the right thing by being involved in the study and taking my medications. She said there is no better place to be for MS care.

After my shot victory and minor breakdown, we went to another building for my MRI. That was the best MRI ever. I got to watch the cooking channel! Rachael Ray and Ina Garten--not my favorites, but beggars definitely cannot be choosers.

I was feeling kind of run down by the time I left, but all in all, it was a good day. I am grateful that I am in the study and that I live near a world-renowned MS center.

Another Good Day

I had another good day. I began the day feeling like myself! No pain and normal energy. (Except for weakness and spasticity... well, close to feeling like myself.)

I did come home and collapse... but only for about 15 minutes. Then I rested and used the computer for an hour. Then I was good to go for teaching in the evening!

Not that I do not want to have good days, but I do not want my doctors to see only good days. Well, we will see how it goes tomorrow.

Sensory:

-Pins and needles: 2, had them up the outside of my right calf for a while this afternoon, which I have never had before. Taking my gabapentin put a stop to it.

-Tingles: 0

-Dysesthetic pain: 1

-Paresthesias: 0

-Numbness: 1

-Vision: 3, just blurry, no pain

-Nerve pain: 1

-Hearing: 0

Motor:

-Walking: 1

-Sore muscles: 0

-Fine motor: 2?

-Weak muscles: 4

-Spasticity: 2

Cognitive:

-Processing: 0

-Memory: 1

-Attention: 0

-Confusion: 0

General:

-Fatigue: 2

-Balance: 1

-Sleep: 1

-Bladder: 1

-Proprioception: 0?

-Swallowing: 1

-A: 0

-B: 0

Emotions: Busy and good. I did snap at a coworker, but she had it coming--for like a year. She was pulling some passive aggressive crap, and I called her on it.

Two in a Row!

I had another great day today. :)

Did some anaerobic exercise today. :) :) :)

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 1

-Paresthesias: 0

-Numbness: 2

-Vision: 3, quite blurry, pain just a few brief times

-Nerve pain: 0

-Hearing: 0

Motor:

-Walking: 1

-Sore muscles: 0

-Fine motor: 3

-Weak muscles: 4

-Spasticity: 2, it was mild, although I had some odd fasciculation-type things a few times

Cognitive:

-Processing: 1

-Memory: 1

-Attention: 0

-Confusion: 1

General:

-Fatigue: 2

-Balance: 1

-Sleep: 2

-Bladder: 1

-Proprioception: 0?

-Swallowing: 0

-A: 2

-B: 0

Emotions: Mostly fine. A friend brought up the shots on Friday, and I felt something not happy--so I pushed it right down.

Great Day!

Rocking today! I had close to normal energy for about an hour today. And fairly decent energy for about three hours surrounding that.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 2 now, but I had none most of the day :)

-Paresthesias: 0

-Numbness: 1

-Vision: 2, just blurry, no double vision and no pain

-Nerve pain: 1, depending on how I sat. Most of the day none!

-Hearing: 0

Motor:

-Walking: 1

-Sore muscles: 1

-Fine motor: 3, still poor handwriting, dropping stuff

-Weak muscles: 5, legs worse than arms, right side worse in general

-Spasticity: 3, mostly in the evening

Cognitive:

-Processing: 2

-Memory: 1

-Attention: 0

-Confusion: 2, I don't know if it was forgetting or confusion, but I made quite a few gaffes today. I confused people and got strange looks and... I cannot remember what else.

General:

-Fatigue: 3, I was really dragging and would have rated it an 8 from 7:00-10:00 am, but my energy became great around 11:00.

-Balance: 0, I guess--I did not really pay attention

-Sleep: 1

-Bladder: 0

-Proprioception: 0?

-Swallowing: 1, I was cracking myself up when I tried to eat an apple. Apples are so hard to eat! You have to manage the bulk plus the juice. I kept choking on the juice. Whatever, I still ate the darned apple.

-A: 1

-B: 1

Emotions: I'm okay. I am looking forward to Friday's appointment.

Coming Down With Something?

I had a weird day, because I was so tired and weak, but my pain was low. Sometimes my sensory system was a bit on edge. Maybe I am fighting off a virus or something--everyone at work seems to be, plus the people I was visiting over the holidays. I felt a bit flu-ish. Not exactly achy, just hypersensitive.

I had trouble driving today. I was trying to figure out why. Fatigue? I am guessing that is it. Probably cognition is a bit of it.

Sensory:

-Pins and needles: 1

-Tingles: 1

-Dysesthetic pain: 1

-Paresthesias: 0

-Numbness: 1

-Vision: 3, it gets worse and better. I wonder why.

-Nerve pain: 1

-Hearing: 0

Motor:

-Walking: 1

-Sore muscles: 1

-Fine motor: 3, poor handwriting--enough that others noticed

-Weak muscles: 6, my legs were weak today. And my right side in general.

-Spasticity: 4, and had some twitching in my left foot

Cognitive:

-Processing: 2

-Memory: 1

-Attention: 1

-Confusion: 1

General:

-Fatigue: 8

-Balance: 1

-Sleep: 2

-Bladder: 1 

-Proprioception: 1

-Swallowing: 1?

-A: 0

-B: 0

Emotions: I'm okay.

Double Vision No Es Bueno

Today I had double vision off and on. It was not a problem for big things, because the edges of them are just blurry. The main negative effect was with print, because it was like they had a weird double font. That made it hard to read.

I just had a weird day. My sensory system feels overloaded.

I am so careful on the stairs now! I do not want a fall. If I broke something, I would be so mad.

Sensory:

-Pins and needles: 2

-Tingles: 1

-Dysesthetic pain: 3

-Paresthesias: 0

-Numbness: 2, more in my right foot

-Vision: 3, double vision sometimes as mentioned above, difficulty focusing (my eyes jump), left eye worse than right (CHANGE). But no pain woohoo! (Update at 7:40--spoke too soon! Mild pain in/above/around my left eye, and it feels like my eye muscles are spastic.)

-Nerve pain: 2

-Hearing: 1

Motor:

-Walking: 1

-Sore muscles: 2

-Fine motor: 1

-Weak muscles: 5, arms worse than legs now--this switch began yesterday and was more pronounced today. Interpreting was so hard. Sometimes I wonder how much longer I can do that. I work for three hours straight every Sunday. It is more than a professional interpreter would work without a partner!

-Spasticity: 3

Cognitive:

-Processing: 2, comprehension of quick speech was difficult. I had some expressive difficulties; one that made me laugh was when I said, "She borrowed that to her." That is fine in my second language, but not in English! I somehow mixed up the languages or transliterated or something.

-Memory: 1

-Attention: 2, I had a few weird moments where I was not sure what was going on around me, because I had zoned out. I had to work to maintain focus. This was during church. Hard to keep it together for three hours.

-Confusion: 1

General:

-Fatigue: 6, it took about two hours after church to recover enough to sit up and be human again

-Balance: 1

-Sleep: 2, woken up by fireworks! Happy New Year.

-Bladder: 1, I am a little concerned that I am not putting out ask much as I am taking in. It might just be the slow flow fooling me.

-Proprioception: 1

-Swallowing: 1

-A: 0

-B: 2

Emotions: I almost cried a few times during church; it was during RS, when they were discussing sisters helping each other. I need help. The problem is that I do not know what to ask for, so I ask for nothing.

Also, I am still a little nervous about my appointment on Friday. I am going to begin giving myself weekly shots, possibly for the rest of my life. When that comes to mind, I feel something weird bubbling up inside me. It is like I want to scream or flail or hit someone. Push it down... Push it down...