Hold the Phone...

More changes!

Because of my delicious, new pain, Dr. Rick said to hold off on switching from gabapentin to Lyrica. He wants to wait until I am more stable (I did not even laugh when he said it). He gave me a new medication called Trileptal. Another seizure medication, which often helps with trigeminal nerve pain.

I either have trigeminal nerve pain or "ice pick headache." He is not sure which, but he is going with trigeminal nerve pain meds to see how I respond. I began taking Trileptal today. It is the kind of drug you have to take everyday and build up a steady state with, not like the tramadol, where I can take more or less depending on how much pain I have.

Speaking of tramadol, Dr. Rick again reminded me to cut it to 25 mg. Ideally, he would like to see me off it, because I have quite a few drugs that can interact. Tramadol, gabapentin, Trileptal, and Ambien CR. And Vicodin, but I will not need to take that anymore, since I stopped the Avonex. Or I hope I will not need it again. It stinks at helping nerve pain, so probably not.

I have had a weird headache today, on the top of my head. The trigeminal nerve pain started in the afternoon, but then it got a little better. Maybe the Trileptal is already working? Whatever, I will take it.

So that is the bad news. The good news is that I will stay in the study! I know: How is that good news?

Basically, I have three options:
1. Continue in the study with the shots (which I know means Avonex, although technically it could be either Avonex or daclizumab.
2. Continue to be followed by the study, with the regular visits and labwork (all free). I could pursue any line of treatment I choose but would have to pay for the [pricey] MS drugs.
3. Leave the study altogether.

Option 1 is pretty much out. It would be nice to have free MS drugs (the shots), but free is not so great if they are not working. The only real advantage to option 3 would be not driving into the city every month if I were feeling okay and did not need to be seen. But I think the benefits of free visits when I need them (um, all the time) and free labwork outweighs that drawback. So I chose option 2.

I have not heard from the nurse yet about my next appointment, which should be next week. Oh, and I have not heard back from my internist's office about psychiatrist referrals. I guess I will add that to my to-do list for tomorrow (like I maintain a to-do list...).

Good-bye Avonex, Hello Aubagio

So much to say!

I went for my regular appointment last Friday and ended up dropping out of the study. Avonex was not a good fit for me--it is obviously not helping.

My neurologist gave me the choice of Copaxone and Aubagio as the next logical steps. Let's see...

Copaxone
-On the market since 1996
-Daily subcutaneous injection (although the manufacturer is applying for FDA approval of a higher dose given three times per week)
-Immunomodulator
-Commonly causes site reactions like pain, redness, and hard lumps
-Commonly causes fat breakdown under the skin, making your thighs and stomach dimply
-Can have cardiovascular side effects, along with many others
-May reduce relapses by about 30%

Aubagio
-On the market since October 2012
-Daily pill
-Can cause abnormal liver tests and hair loss (but apparently not a ton of hair loss)
-May reduce relapses by about 30%

I chose Augabio. Wouldn't you?

My neurologist is not confident that anything is going to work for me. He said that my disease characteristics are similar to a subgroup that do not respond well to anything. Tysabri is a possibility in the future. I am JC positive, which puts me at higher risk for serious complications, but I would still try it. Matter of fact, I would try it now. Some people actually feel better on it. The best I can hope for with other meds, including Aubagio, is to feel the same and get worse less quickly than I would otherwise. Another medication I could try is BG-12, which is an oral medication expected to be FDA-approved early next year.

That is not the only med change up for me. He is transitioning me from gabapentin to Lyrica, reducing my tramadol (I know: huh??), and trying Celexa instead of Cymbalta. I am still open to trying Cymbalta in the future if the start-up phase were slower. He did give me a low dose of Celexa, 10 mg. I started it yesterday. It makes me feel weird in a not-good way. And I think it makes me feel sick. But that is hard to say, because I also have...

New pain! In my face! It began on Wednesday or Thursday and was about a 6 until it suddenly shot up to 8-9 yesterday and 9-10 today. Seem to be trigeminal nerve pain. Ironically, it is commonly called "suicide pain." Like I need anything else to make me want to leave earth. Here is where the pain is...

See the orange lines? My pain is along the one going straight up, the one going to the eye and up to the forehead, and the one going along the cheek to the upper teeth. It feels like someone is stabbing me in the face with a hot poker. My right eye itself kind of hurts, but the really bad pain is above/behind it. It also hurts on the ganglion, the area where the white label line is pointing.

I drew on my face with eyeliner, showing where the pain is, and I emailed a picture of that to Dr. Rick and Alyssa. I know they are not working today, but maybe they will see it tomorrow. If not, I will call.

Otherwise I am the same. My burning pain is holding steady around 6-8. My left foot is killing me, has been all week. That might be getting worse, actually. It is not bad right now, maybe a 6, but it has been hanging around a 9. My walking is the same or maybe better. I had a sore throat this week, but it is tons better yesterday and today.

Today my hands hurt, but not the skin. Feels musculosketal, so I doubt it is from MS. Maybe from Celexa.

I am going to try icing my face...

By a Thread

Gosh, the days are hard. People talk to me at work, and it is overwhelming. I just want them to slow down.

Sometimes I get anxious when I am sick and someone asks me to do something extra. I feel like I am barely making it, and I will drown if I have to do more.

Walking is becoming harder; in the afternoons I cannot hide the struggle. I walk slowly and try to look like I am just not in a hurry, concentrate on making my left leg catch up, remember to smile.

I wish I did not need to work. It makes me sad that I only have one good day: Sunday. Working Monday-Friday, sick with Avonex on Saturdays. I guess I really have half a good day, because Sunday afternoons I work at church. Then I have to recover.

I do not understand why I have gotten so bad in a relatively short time. A year and a half ago I was fine.

Great MS Clinic Visit!

I had a great visit at the MS Clinic! I saw Dr. Andy, sadly for the last time. His fellowship is over, and he has accepted a faculty position at a different teaching hospital. I will miss him!

Dr. Andy went through the usual evaluation, which includes checking my strength. He was amazed at how much I have improved. I guess all that PT helped. Maybe the gazillion supplements I take? I think it is mostly up to the Lord, though. He giveth and taketh away. At any rate, Dr. Andy and I celebrated my increased strength together.

He was also amazed at how much my walking has improved. I feel like the last three days have been much better in general; if he had seen me a week ago, things would have been different. Still, I am generally on an upward trend, and I cannot complain.

I liked my new nurse, Ricki, who is filling in for Alyssa's maternity leave. She had her baby on Monday. I was excited when she said that Alyssa had been asking about me, that she wanted to visit. She had an appointment for her older daughter in a nearby building, and she was planning to visit the neurology department to see her friends and look for me. I found her in the infusion room when I went there to get my vitals checked (which were 121/84 and 97--boo). Alyssa bent down to hug me, and I got to see her sweet, wee baby. So cute, and so much hair! And so tiny. I did not get to hold her--Ricki and the other nurses monopolized her. Darn.

And I did great on the 25-foot walk (like 4 seconds), vision "test" (20/20), and fine motor test (about 14 seconds). All of those scores are awesome. So I left the clinic feeling great.

Oh, and Ricki went over the injection procedure with me, since I have had more pain lately. Alyssa had contacted Avonex to see if they had any input. They did, and Ricki also had input, from her experience. She taught me a different way to find a site--it is a much smaller area than what Alyssa had taught me. And she gave me a typed copy of the tips, which was helpful. She advised me to stay away from side-thigh injections, that it is harder to reach the muscle. Good, because those tend to hurt more! I can just use the fronts of my thighs. She told me to check the tip of the needle to see if it has liquid. If the medication touches my skin, it will burn. Hm. I wonder if that happened to me before. And she said to do the shot quickly, like a dart. Eh? No. I will try to do it quickly, but I am afraid I will hit the fingers of my other hand if I jab it in like a dart. My other hand would, of course, be stretch the skin--very important so that the needle can get down into the muscle.

My shot this evening went great! It hardly hurt at all.

This afternoon, I bought paint. Lots of paint. Some friends are coming over to help me pain the whole darn house. Almost. The kitchen, living/dining, entrance, halls, stairs, and bathrooms. I will do the bedrooms another time. One friend and I are planning to pain a bit tomorrow morning but mostly on Wednesday, when other people come to help.

Sensory:

-Pins and needles: 1
-Tingles: 1
-Dysesthetic pain: 5, cold pain in left leg/foot--more in foot
-Paresthesias: 1, some random vibrations in my feet

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

Motor:
-Walking: 1, fine all day, minor difficulty in the evening--got slow and less smooth
-Sore muscles: 6, left shoulder, left quad, as well as my right upper arm and forearm. Wondering if forearm pain was related to blood draw

-Spasticity: 3
-Weak muscles: 1

-Endurance: 2

-Fine motor: 1

Cognitive:
-Processing: 1, had some trouble following directions at the clinic
-Memory: 0
-Attention: 1
-Confusion: 0

General:
-Fatigue: 2
-Balance: 0

-Sleep: 1

-Bladder: 2, medication I am still guessing
-Proprioception: 0
-Swallowing: 1
-A: 2
-B: 0

Emotions: I was happy at the clinic visit, and I was happy that I was able to go all day and not get tired until around 7:00 pm! Then I was ready to fall asleep by 9:00. Well, I had a busy day. Busy but good.

That Time Again

It is that time again. Shot day... yes. But that is not the event to which I refer. Relapse time.

I have had relapses every two months: May, July, September, November, and January. The odd-numbered months. March is an odd-numbered month.

I guess it is just a matter of time. <sigh>

I decided not to do my Avonex/placebo shot yesterday, because I wanted to do it on a different day than my daclizumab/placebo shot. I am still not 100% sure which one is the active drug and which is the placebo. I wanted more information.

I became sick the evening of the my first shots. I had had both shots on the same day, and I did not take seriously their potential to make me sick, particularly the Avonex shot. I took ibuprofen and was planning to take it again six hours later, but I did not pay attention. About six hours after the shots was when I became sick with chills, fever, and severe pain. "Aches." Ha. These are classic Avonex symptoms, so I assumed that Avonex was the active drug and that it had made me sick.

Since that first shot, I have not become sick again. Is it because my medication regimen has worked? Or is it because it was not what made me sick in the first place? I wondered if the other shot was to blame, or if I might have just been sick that day.

Yesterday I had my daclizumab shot, and I took no pain medication. None is required. I did not feel sick yesterday. I did feel sick this morning. And again around noon. I held on for a couple of hours and then took a nap. I felt better after that but definitely not back to normal.

I do not know what to think. Well... Avonex is probably the active drug.

Sensory:

-Pins and needles: 2
-Tingles: 2, left hand, right thigh after shot
-Dysesthetic pain: 5
-Paresthesias: 5, a few stabs, also electricity buzzing on my legs--felt like on the skin, not deep

-Numbness: 3
-Vision: 0 I guess
-Nerve pain: 5
-Hearing: 1

Motor:
-Walking: 2? I mostly sat on the couch
-Sore muscles: 5, some almost-spasms in my right lower leg, pain in right thigh for several hours after the shot. It has been more than four hours, and it still hurts--unusual

-Spasticity: 5, left leg especially
-Weak muscles: 3

-Endurance: 5 I guess

-Fine motor: 2

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

General:
-Fatigue: 7
-Balance: 0

-Vertigo: 0

-Sleep: 1

-Bladder: 2, trickly all day lately--still confident that this is from despiramine, as is dry mouth
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 0

Emotions: Confused about the medication stuff! A little frustrated that my shot today hurt so much. Mostly calm, bored.

Getting Normal

Gee, I cannot believe I forgot to blog on Thursday. I do not know what I was doing in the evening. I had a good day. I totally rocked PT. My balance has gotten so much better! The PT did note that it was much worse with my eyes closed, which means that I am partially relying on vision for balance. Maybe I am getting better at compensating that way. Fine, as long as I do not have a fall. Hmmm... Oh, I did not have a lot of pain on Thursday. I would rate it a 4.

Yesterday I had such a good day. I almost felt normal. I got tired sometimes, and my strength is still not what it was. But I am able to do more than I have been, and I am needing less rest during the day. I went to the temple in the evening, which was so enjoyable. I did begin to have some pain (the nasty, electricity/heat kind), but it subsided. I got tired toward the end of the session--it was late for me, because we started at 7:45.

I am walking so well lately! And I can go up the stairs upright. Using the wall or rail to help pull myself up, but NOT going up on all fours. Seriously, that is what I have been doing--and it has been a struggle. I guess I could get embarrassed, but whatever.

A few times I thought to myself, is my MS going away? Will I not have it anymore? Or did I not really have MS?

Kind of silly.

One thing that was tough was when I went skiing.... Yup, skiing again! I had awful burning pain. It felt like my feet were on fire. I guess they were hot, or the boots were tight. But I always make my boots tight. I do not know why it hurt so much that day. Maybe it was the socks. I usually use thinner socks. Anyway, it was very painful, but it did calm down when I took the boots off.

My shot went fine. I am getting quicker at the whole process. It takes less than five minutes, from alcohol wipe to band aid. I did not take Tylenol this time, just 1000 mg of ibuprofen before the shot and 440 mg of Aleve four hours later. Then I forgot to take more Aleve until 10:30 this morning. More than 12 hours! I think I may not be having a reaction anymore. I am almost wondering if I was really sick the first time and not having medication side effects.

Sensory:

-Pins and needles: 1
-Tingles: 1
-Dysesthetic pain: 0 much of the day.. of course 9 for skiing.. and 3 for evening
-Paresthesias: 2, buzzing and pulling in my right mid back. I told Alyssa and Dr. Rick; they said to keep an eye on it and let them know if it gets worse

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

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

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

General:
-Fatigue: 1
-Balance: 0
-Sleep: 1, over eight hours
-Bladder: 1, desipramine side effect
-Proprioception: 0
-Swallowing: 1
-A: 3
-B: 0

Emotions: Happy to ski, happy to go to the temple. And touched at the concern of a sweet friend.

Got Pretty Sick

I had a fine morning, but I got pretty sick this afternoon. I did not manage my medication regimen well enough, I think. When I was able to get back on track (evening), I did better. The problem is that I had taken one Aleve at 5:00 am and another one at 10:00 am. I started hating life around 1:00, but it was too early to take another one. I ended up taking Tylenol and then just suffering until I could take two Aleve together at 5:30. Around 6:30, things perked up.

And I did not hydrate well enough. I guess that I did not have an appropriate level of respect for Avonex this week. Lesson learned. (Maybe.)

Sensory:

-Pins and needles: 4
-Tingles: 1
-Dysesthetic pain: 4
-Paresthesias: 0
-Numbness: 3, exactly the same as yesterday
-Vision: 4, worse and better... hmm... why does it get worse? Or why does it get better. Not that "better" means close to normal.
-Nerve pain: 4
-Hearing: 2, bad early this morning! Fine all day. The tinnitus lately has been more broad spectrum rather than a more periodic sound (it used to be a very narrow band of noise around 4,000 Hz).

Motor:
-Walking: 3 this morning, but it became 7 for part of the afternoon. Today was definitely the closest to collapse I have been.
-Sore muscles: 7, and that is on Aleve--my poor shoulder and upper arm
-Fine motor: 2
-Weak muscles: 5, although it was 8 at one point (see Fatigue). I could barely walk.
-Spasticity: 6, range of motion is limited in my right shoulder. Plus the usual with my legs, but not all day.

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

General:
-Fatigue: 6, although it was 9 at one point. I actually sat on the floor in the grocery store. Twice.
-Balance: 4, seriously walking sideways in the dark and needing to hold on to things to stay upright. Leaning toward the right (better than the wrong!)
-Sleep: 4, I got 7 hours, though not all at once. Good thing I did not need to get up early, because I was up at 5:00, fell asleep again around 7:30, woke up, slept some more, and final got up at 9:00. Nice.
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 7
-B: 5

Emotions: I broke down and cried twice today, just feeling so horrible. This afternoon was really bad. And I was irritable--that happens when I am very sick. I was so dizzy, I could not even get up for about two hours. And just feeling like I had the flu. No fever, but a little bit of chills. Anyway, all that made me emotional for some reason. Or maybe the steroids messed with my emotions? I don't know why now, when I am down to 40 mg on the taper. Whatever the reason, I did have a rather emotional day.