Can't Sleep

I can't sleep! I have been awake for an hour. I had to use the bathroom, my left eye hurts (yes, left, not right), and I have tinnitus. Something is up with my body.

After a while, I started thinking about that meeting yesterday morning. I had a brilliant idea (the problem is not resolved; the meeting was mostly about bull-headedness and arguing). My mind just really wanted to think the situation through; it had been a half hour before I knew it. I tried to turn off my brain, but I found myself thinking about it again.

Finally, I got up and made some notes. Hopefully that will help me sleep. I am exhausted. I think that the work thing is not why I woke up, but it is keeping me up.

Great Day

I had a great day today. The medication increase seems to be helping!

Sensory:

-Pins and needles: 1

-Tingles: 0

-Dysesthetic pain: 4

-Paresthesias: 1

-Numbness: 2

-Vision: 3, eye pain... owie... my right eye has been hurting all evening

-Nerve pain: 5

-Hearing: 0

Motor:

-Walking: 2

-Sore muscles: 3

-Fine motor: 3

-Weak muscles: 5

-Spasticity: 3

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 0

-Confusion: 1

General:

-Fatigue: 2

-Balance: 1

-Sleep: 2

-Bladder: 0

-Proprioception: 1

Emotions: I am feeling calm about the screening tomorrow. I am looking forward to it.

Just Another Day in MS Town

Today was great! My friend drove the rest of the way to where we were going, and I saw old friends. I am staying at their house for a few days.

Sensory:

-Pins and needles: 0

-Tingles: 0

-Paresthesias (burning): 2, left foot, behind/above my right knee (NEW). But the burning behind my knee feels different. It feels like a rug burn (but the skin shows nothing). The burning in my foot feels like walking barefoot in the snow--freezing/burning.

-Paresthesias (other): 1

-Numbness: 1

-Vision: 3, blurry, pain in left eye this evening

-Nerve pain: 1

Motor:

-Walking: 2, and their house is too darned big!

-Sore muscles: 4

-Fine motor: 2

-Weak muscles: 5, I had trouble cutting my meat today. :(

-Spasticity: 5

Cognitive:

-Language processing: 2, it is hard for me here with all the people talking. And once I meant to say my friend's friend's sister's name and I accidentally said my friend's dead sister's name. She looked shocked that I mentioned her sister. Um.. didn't mean to. And some word finding for a while, but later it was better.

-Memory: 0

-Attention: 0

-Confusion: 1

General:

-Fatigue: 4, crashed a couple of times but not enough to fall asleep. I did lie down and rest this afternoon.

-Balance: 1

-Sleep: 5, poor sleep in a hard hotel bed!

-Bladder: 0

Emotions: Nothing to report.

Optic Neuritis

My eye hurts again. It did last night.

It kind of feels like a toothache... But in my eye. It's my right eye.

Being Happy Now

I was so glad to be well enough to go to church today. My spirit was lifted by the wonderful meetings we had, especially the RS lesson.

Although my left arm crapped out on my during RS! It was just not cooperating, and trying to force it to work was just making it sore. Finally I gave up and signed with my right arm only. That was better for my left, but hard on my right, because I carry more tension when I sign one handed. That one hand needs to be very accurate--no room for sloppiness that can be acceptable with normal, two-handed signing. Yeah, so that stunk, but...

I still enjoyed the lesson so much.

I cried while sharing an experience with my deaf friend (privately, not aloud), but the story was not related to my MS. I think I will share that one on my regular blog.

Still, I have applicable thoughts to MS. One thing that was brought up was the importance of being happy now. This is a touchy subject on the MS forum, because it is easy to have a negative perspective about life or to be discouraged when you have an unpredictable, incurable, degenerative disease.

I certainly get discouraged. I have been very discouraged for the last three days, because I am getting worse again. My eye was hurting during RS, and I am sensitive to light. And having trouble focusing my eyes. And let's not even get into the pain and discomfort of pins and needles or numbness, which is increasing.

But I try to remember that I am probably going to get worse. You would think that would make it worse, but I do not mean that I dwell on the dark days that lie ahead. I mean that by recognizing that things will probably get worse, I can say to myself, this is as good as it gets. Recognize it. Enjoy it.

If things get better, great! I will enjoy that. But I cannot count on things getting better, so I might as well enjoy the things I have or am able to do right now.

I want to check and see if I can play the organ. Honestly, I doubt that I can. I played the piano one day last week, and three or four songs absolutely exhausted me. The organ requires so much more, physically. Balancing on the bench. Coordinating arms and legs--well, more like fingers and feet. Cognitive skills for reading the music. Attention! Sometimes I let my mind wander, and then I lose my place in the music.

However, if I have the ability to play the organ now or in the future, I would like to do it. Use my skills while I have them. I am unfortunately very unreliable, so I do not know if I could have that as a calling. But I could sub. Or work something out with the person who normally plays--she would not mind having help. I suppose that it would exhaust me, and I might not be able to interpret... I guess I would have to see how it goes.

For the last month I have hemmed and hawed, but earlier this week I went ahead and bought (okay, charged) a season pass that works for a few little ski places nearby. I skied once a couple of years ago, and then last year I bought a season pass and went often. I went from struggling on greens to being comfortable on blacks. I did double blacks for a challenge. Steeps, not moguls. It was awesome. And now I am so, so glad that I went often and developed those skills. I love skiing. I mean, LOVE. This year, my goal will be to ski at least on greens or easy blues. If I can ski a regular blue, I will be so happy. If I can ski a black, that would be out of this world. I am going to appreciate anything I can do, and I am going to try to keep any skills that I have for as long as possible.

I learned this lesson a few years ago, when I found an old picture of myself and a baby, who is now eight years old. I remember that time, that I was insecure about my appearance. Looking at that picture now, my goodness, I was so thin! I wasted my thin years with my lack of appreciation. Right now I am 20 pounds above where I was at that time. But I am more than 20 pounds below my highest weight, so I like my current size!

Being happy now requires conscious effort. I think it is all about counting your blessings. When you recognize how much you have, how can you not be happy?

Still on the Juice

I'm receiving my fourth dose of Solu-Medrol today. I don't know if it's helping yet. I think maybe it is but its own side effects are preventing me from really feeling its benefits? Maybe I'm just being optimistic.

I went to work today, came back tired. But I made it through without sleeping. I did need to turn off the lights and rest my eyes, since they were hurting... well, the left one was. And I think I was getting a headache from my vision. I still have one.

Sensory:

-Pins and needles: 1

-Tingles: 4

-Paresthesias: 0

-Numbness: 1

-Vision: 4--definitely worse than yesterday. Used my old night driving glasses (which I never used much anyway) most of the day.

Motor:

-Gait: 1

-Sore muscles: 4, lower when taking ibuprofen (which I have done all day because of my period)

-Fine motor: 4

-Weak muscles: 3

Cognitive:

-Language processing: 2

-Memory: 2

-Attention: 1

-Confusion: 2

General:

-Fatigue: 6

-Balance: 2 daytime, 4 night--vision probably makes it worse. I walked into my bedroom door early this morning--thought it was open.

-Sleep: 2--I got in 9 hours!

-Bladder: 5--I'm hardly peeing much at all. I'm drinking the same amount as usual.

-Anxiety: 1

Dr. Stupidhead Gabby called me today to ask if I've begun the Solu-Medrol (duh, three days now) and how it's going. I told her about my eyes. Forgot to tell her about my bladder. She said that I can call my eye doctor to discuss my vision. I told her I'll wait until I finish the Solu-Medrol course, see if that helps. She agreed that's a good idea (duh). And she made a big show of telling me how she wrote up my referral to Dr. Cal at the MS Center I requested. I told her that I already have an appointment with Dr. Paolo, because there's a long wait to see Dr. Cal (he's the director of the center). She said to tell Dr. Paolo hi, because they are personal friends. Rolling my eyes.

I HATE THIS BITTER TASTE!!! It begins about 15 minutes after the medication starts flowing. :(

More Than Just Numbers

Did I mention that I have a tremor in my hands now? I noticed it Friday night--it appears to be an intentional tremor, meaning that it happens when I go to do something. Um, wait, I do have a resting tremor, too. The intentional tremor is worse. Finely controlled movements with my fingers are difficult: when I try to adduct/abduct my pinky slowly, it trembles and jerks through the range of motion. Hopefully this is caused by the steroids and not evidence of worsening MS.

I wrote an email to my best friend, so I'll just post it here with slight modifications. Why reinvent the wheel?

By body is having kind of a rough time with the steroids. Turns out I'm on a high dose. The bishop's wife is a nurse, and she's gone on some doctor visits with me and checks with me to see how I'm doing. She asked what the dosage is... 60? 100?. Um, 1,000. Not once but five times. The bitter taste it causes sucks. It sticks around for like 10 hours and makes food taste spoiled. The steroids give me a headache sometimes and make me feel like I have the flu. Tired but can't sleep at night very well. That might just be the MS or stress, though. My ears hurt. Basically, I just feel like a pretty sick girl.

I got my period at about 4:00 am. File that under "figures."

Last night, my left eye started hurting. Kind of sharp. Not severe, but enough to keep me awake. Just hoping the steroids do their thing before I lose sight in that eye. It's the one with optic neuritis. Honestly, both of my eyes aren't great right now. I had difficulty reading music to play the piano today. I was trying to learn a piece of music for choir. It was hard to see which line the notes were on. That, along with the eye pain, made me scared to lose my vision, but then I was disappointed in myself for being afraid. I want to have faith.

I don't want to give the impression that things are only hard. I'm now a pro at the saline, medication, saline, heparin routine for doing my IV treatments. It's easy.

I have had a good weekend despite any troubles. And I'm hopeful that the steroids will work. I researched drug treatments and know what I definitely don't want and what I would be willing to try. I'm beginning an inflammation reducing diet and some other "alternative" medicine strategies. It's just hard to remain hopeful when new symptoms show up, like the eye stuff. 

Just as I was about to send this, I got a call from your brother Phil (her brother is a radiologist doing a fellowship in neuroradiology). He said phrases like this: periventricular white matter lesion near the right frontal horn--conspicuous absence near left frontal horn--asymmetricality. Lesions in subcortical white matter, periventricular area--distribution across space. Distribution across time not yet established--one MRI. Nothing enhancing with contrast.

So those are my Phil notes, and I am to question a neurologist who does not notice these details on his own. Those were things that Phil noted that were missed by the other radiologist. He did not note lesions on my spine, and neither had the other radiologist.

Phil's opinion is that the amount of scarring on my brain, while not excessive, is not normal in a person my age who is otherwise healthy. You might see it in the average 50-60 year old. You might see it in someone my age with severe kidney or vascular disease. That doesn't pertain to me. So it should be a red flag that something is wrong. Does it scream MS? No. It does call out MS, though, because although small, the lesions are in classic MS areas. And they are in different parts of my brain, which is part of the diagnostic criteria for MS. I don't have the other part of the diagnostic criteria, which is evidence of the lesions persisting or increasing over time. I've only had the one significant attack and the one MRI. The enhancing with contrast note is that the lesions didn't appear to be active at the time of the MRI. (This lends credence to what I've been reading about the role of Vitamin D--you have damage occurring but probably don't have an attack until your Vitamin D level drops. And "drop" for a person with MS appears to be within normal limits or slightly low compared with other people. My Vitamin D level needs to be double what others' need.)

So... Taking into account the images, my description of symptoms, and the finding of optic neuritis, MS is the most likely problem. Apparently optic neuritis is a key finding in the diagnosis. I guess that's why even Dr. Gabby didn't deny me treatment after that.

Phil is in favor of doctor shopping until I find someone who respects my autonomy and considers me a partner in determining treatment. He said that without knowing the fullness of the medical nuttiness I've encountered.

And he wanted to make sure I won't be on the steroids long term.

He wants to be apprised of my visit to the MS Center (he was polite enough to add only if I don't mind sharing or have enough energy). He feels that they will certainly have up-to-date opinions based on research and hopes that they will be willing to partner with me in determining a treatment plan. He advised me to send the MRI films, not just the reports that they requested. And he offered to listen and give advice any time I am unsure that my doctors are providing appropriate care.

I appreciate Phil's opinions, and I appreciate you suggesting that I contact him. I feel calmer since speaking with him (could be the totally unemotional manner with which he presented his findings ;). I think that although of course I don't want MS, I do want to be confident in the diagnosis. The diagnosis leads to the treatment, which is what I'm really interested in. My question is, "Now what the crap do I do?" Because of Dr. Gabby's vacillation and the total disagreement between neurologists, a tiny part of me still questioned the diagnosis. The way that Phil explained it made sense. Instead of just giving me an opinion, he told me how that opinion had been reached. He's nothing if not logical and thorough. :)

So that's what's up.