Not a Low-Pain Day

I seriously think that my body overreacts to changes in barometric pressure. A new front rolled in today, bringing rain and pain. (Aren't I the clever one.)

I forgot to comment the other day about something my boss said to me. "Wow, you look really healthy. I know you have struggled with your health (please, you don't know the half of it), but you look really, really good." Uhh... thanks? I have improved my makeup proficiency, and I fixed my hair decently that day. I do not know what else to say. Maybe because I lost 20 pounds and have kept it off?

The clinical trial nurse, Alyssa, emailed me. She was asking which day is good for rescheduling the screening visit.

I hope the test results are ready quickly. I really want to get on medication.

Sensory:

-Pins and needles: 5, I was sitting in a meeting today and having trouble paying attention, because all I could think was, "My left leg is going numb... pins and needles... this is surreal. These people have no idea that I cannot feel my foot, and the rest of my leg has horrible pins and needles." I feel really alone in those moments.

-Tingles: 1

-Paresthesias (burning): 4, in my feet and... wait for it... butt! You cannot say that my MS does not have a sense of humor. Sick humor, unfortunately.

-Paresthesias (other): 0

-Numbness: 4, lost feeling in my whole left foot for a while, and also a new permanent numbness: my right baby toe. Now I have a matching set of numb toes.

-Vision: 3, difficulty focusing, seeing double with the letters on street signs, light things look like they are glowing around them. Floaters as always, but I will just bring them up from now on if they get bad.

-Nerve pain: 6 all down my left sciatic nerve--the butt nerve's connected to the...calf nerve

Motor:

-Walking: 1

-Sore muscles: 2

-Fine motor: 2

-Weak muscles: 5

-Spasticity: 2

Cognitive:

-Language processing: 2

-Memory: 2

-Attention: 1

-Confusion: 1

General:

-Fatigue: 3

-Balance: 2

-Sleep: 2

-Bladder: 1

Emotions: I cried a bit a couple of times this evening. Now I cannot remember why. Ah, the MS brain. But I do remember that I sucked it back in. I suppose I will let it out on Wednesday, when I do not need to work. Then I can allow myself the luxury of grieving.

Cognitive Problems Kind of Suck

Today I interpreted at church. It was so hard! My brain was not working well, so it was hard to understand things and express myself (and others). My memory problems affected my interpreting. To be a good interpreter, you have to listen until a complete thought is expressed, and then express that in the target language while you listen to the next sentence in the source language. I kept losing the thoughts before they were completed.

And I am still weak.

Sensory:

-Pins and needles: 0

-Tingles: 0

-Paresthesias (burning): 1, because I forgot to take my afternoon medication--the burning reminded me around 5:00

-Paresthesias (other): 0

-Numbness: 2

-Vision: 2

-Nerve pain: 4 (sciatica--not sure it is all MS)

Motor:

-Walking: 2

-Sore muscles: 3, from interpreting

-Fine motor: 2

-Weak muscles: 5

-Spasticity: 2

Cognitive:

-Language processing: 4

-Memory: 4

-Attention: 0

-Confusion: 1

General:

-Fatigue: 3

-Balance: 2

-Sleep: 3

-Bladder: 1

Low-Pain Day!

Yesterday I was super stiff in the morning and WEAK. I used the loser scooter at Target, which is embarrassing. I seriously do not make eye contact with anyone while I am in it. I hate using it--the lack of freedom. I feel like I should not get up out of it at all, or people will wonder why I am even using it. So I become irritated by my lack of mobility. However, I am glad they have those scooters, because otherwise I would not be able to go to that store. Too much walking. I would be laid out on the couch for the rest of the day.

I started to feel better in the afternoon. Physically. My brain was not really cooperating. And my eyes were getting worse.

It was a low-pain day, which was awesome!

Sensory:

-Pins and needles: 1

-Tingles: 1, fingers

-Paresthesias (burning): 1

-Paresthesias (other): 0

-Numbness: 3

-Vision: 2, pain in right eye, and it was light sensitive. Difficulty focusing.

-Nerve pain: 2

Motor:

-Walking (label change!): 4, I already described fun in Target, and I also had a lot of difficulty crawling up stairs (walking was too hard)

-Sore muscles: 1

-Fine motor: 2

-Weak muscles: 5

-Spasticity: 2

Cognitive:

-Language processing: 3

-Memory: 1

-Attention: 0

-Confusion: 1

General:

-Fatigue: 2

-Balance: 1

-Sleep: 2 I think

-Bladder: 1

Another Good Day

Yes, I believe that I had a good day, overall.

Sensory:

-Pins and needles: 4

-Tingles: 1, left arm

-Paresthesias (burning): 3

-Paresthesias (other): 1

-Numbness: 4

-Vision: 2, pain again, as I mentioned. And it hurt some last night. Worse today.

-Nerve pain: 4

Motor:

-Gait: 3

-Sore muscles: 3

-Fine motor: 1

-Weak muscles: 5

-Spasticity: 3

Cognitive:

-Language processing: 4, I had such a hard time all day, and I taught a workshop this morning. It sucked when I lost my train of thought or could not think of words.

-Memory: 0

-Attention: 0

-Confusion: 3

General:

-Fatigue: 2

-Balance: 2

-Sleep: 4, 7 hours, because I had trouble falling asleep. Pain in my legs.

-Bladder: 1

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.

Screening Pushed Back

I finally got my MRI script in the mail, and I immediately called to make an appointment. Because my scans will take two hours, the soonest they could get me in was November 28. I was not happy and really tried to get in sooner, but the scheduler was having none of it.

Then I called Dr. Rick to tell him that I do not know if I will be able to keep the screening appointment on November 30 due to the MRI appointment being to close to it. Dr. Harry will need to receive my MRI disc, review it, and make his decision on whether he agrees with the MS diagnosis or not. I guess. I still think it is bull that he is requiring the spine MRI. The diagnosis can be clinical. If he continues to give me crap, I want to switch to another neurologist there. Like Dr. Rick!

When I talked to him, he explained that the NMO test will take two weeks, so I would not be ready for the screening by November 30 anyway.

Too bad Dr. Harry dragged his feet for two weeks, hm?

Dr. Rick's secretary (nurse?) will call me to reschedule.

I also saw Dr. Rob today, because I have a hard bump behind my right ear. He said it is not a lymph node, because it is too high up. It might be an infected mastoid. But it does not hurt. It might be a cyst... but it is a little hard for that. He is going to look at my MRI from September. If it is there, we will ignore it. If it is not there, I will go for a CT scan. Sounds like a good plan to me.

Dr. Rob asked about my appointments at the MS Center. He is glad I am being seen there. It is the right place for me, given how aggressive my disease is. Oh, boy. I hate it when he says that. My disease is aggressive?

I told him about the clinical study. Now, this was before the screening visit got put off. Anyway, he asked about the drug, and I told him the name. He asked if it was a such and such... uh... I have no idea what he said. I said, "It's a monoclonal antibody." Haha, like I know what that means!

I cannot wait to get on treatment. At the same time, I am terrified to get on treatment. It will make my MS more real.

Pain and Phosphenes at Night

What goes on at night? Within about five minutes, my spasticity and nerve pain tend to increase. Last night my left leg was right at the border of crampville. On the line but did not cross over. So that kept me up. Not that I had nothing to do: I could watch the light show on my retinas. Just the electricity-looking kind, not the concentric footballs.

Tongue

Oh yeah and I have a numb/pins and needles tongue on the right side. Showed up again this evening. Ah, joy.

Felt Like Two Days

Today was one of those days that felt like two days. Not that it was a bad day... just long and one thing after another. Nothing exciting to report.

Sensory:

-Pins and needles: 6 left foot all evening (but it was minimal all day!)

-Tingles: 0

-Paresthesias (burning): 3

-Paresthesias (other): 0

-Numbness: 4 left foot, pretty much all fingertips, and of course still my heels and my left baby toe/foot. The baby toe area is slowly spreading. Very slowly.

-Vision: 2, still no pain, woohoo! Just kind of blurry. And amoebae.

-Nerve pain: 6 this afternoon and evening, off and on--my bad leg, naturally

Motor:

-Gait: 1

-Sore muscles: 3

-Fine motor: 1

-Weak muscles: 5, lifted my skis today and could not believe how heavy they are. How did I sling these over my shoulder eight months ago?

-Spasticity: 3

Cognitive:

-Language processing: 3, word finding problems and losing my train of thought often

-Memory: 2

-Attention: 0

-Confusion: 3, I actually had to THINK about what a green arrow means... yeah, it means that I can go and the people across from me can't

General:

-Fatigue: 1--practically normal

-Balance: 2

-Sleep: 3, 7.5 hours (maybe I should make a new scale for this, lol)

-Bladder: 1

I am disappointed that my cognitive stuff has been worse the last couple of days, and the pain sucks, but I am soooo happy that my fatigue is down. That makes all the difference in the world.

Leg Cramping for No Reason

Just after I laid down for bed last night, my left leg started cramping. It was like the spasticity slowly increased to the point that a couple of areas twitched and cramped. It hurt! But it did not last long... less than ten minutes. About two minutes later, it started again but did not get quite as bad and lasted maybe two minutes.

Not fun. I do not want that again.

Did Labs and Had a Good Day

Lost about eight tubes of blood today... but it was for a good cause. It did not even hurt! I barely felt the needle go in, and just a tiny twinge when she had to move it around a little. So I tested the skin on my arm.

Oh, it's kind of numb. Well, that explains it.

Sensory:

-Pins and needles: 1

-Tingles: 0

-Paresthesias (burning): 1

-Paresthesias (other): 1

-Numbness: 2

-Vision: 2

-Nerve pain: 1

Motor:

-Gait: 3

-Sore muscles: 2

-Fine motor: 2

-Weak muscles: 5--definitely my biggest problem today

-Spasticity: 1

Cognitive:

-Language processing: 2

-Memory: 3, frustrating! I keep forgetting what I was about to do or say.

-Attention: 1

-Confusion: 1

General:

-Fatigue: 2

-Balance: 1

-Sleep: 2

-Bladder: 1

Great day, as you can see.

Lab Order Arrived

Got my lab order!

NMO IgG, Copper level, Anti-Ro, Anti-La, Anticardiolipin antibody, ANA w/ reflex, Beta-2-glycoprotein, Lupus anticoagulant assay w/ reflex

So he is checking NMO and copper as he said, as well as Sjogren's and Lupus. Well, I would be surprised if I have Sjogren's, as I do not have the classic symptoms of dry mucous membranes. And I would be surprised if I have Lupus as I have no skin symptoms and my symptom profile is quite neurological. It would be an atypical presentation, but I suppose it is possible.

However, the ICD9 code he put on the order was 340, which I looked up... Multiple Sclerosis.

So I will get my blood drawn tomorrow and hopefully get back all negative results. While I do not want to have MS (I was thinking about starting the clinical trial and almost cried), I am pretty sure I want these other disorders even less.

I never did hear back about my Vitamin D levels, blood calcium, and urine calcium. I am going to call and bug them tomorrow. I am also going to bug them AGAIN about the as-yet-unreceived MRI order.

OH, I think I forgot to mention that I spoke with Dr. Rick's secretary yesterday, and she is working on scheduling a screening visit for me on November 30 for the daclizumab study. Unless something happens with the bloodwork and it turns out I do not have MS after all.

Sensory:

-Pins and needles: 2

-Tingles: 0

-Paresthesias (burning): 1

-Paresthesias (other): 0

-Numbness: 4, no change in the permanently numb areas, still losing feeling when I sit. Most of the time. I should pay attention to times I sit and do not lose feeling--maybe chair height? Softness? Angle?

-Vision: 2.. getting better?

-Nerve pain: 3

Motor:

-Gait: 2

-Sore muscles: 4, and even worse this morning. I am stiff and sore most mornings, then it gets better as I move around, and then it gets worse in the late evening again.

-Fine motor: 2, I am typing much better today!

-Weak muscles: 5, I do not feel safe going down stairs lately. And I sometimes feel like my legs might buckle when I am standing. Standing is harder than walking for some reason. Maybe it is in my head?

-Spasticity: 3

Cognitive:

-Language processing: 2

-Memory: 2

-Attention: 0

-Confusion: 2

General:

-Fatigue: 4

-Balance: 1

-Sleep: 3, close to eight hours but broken up a little

-Bladder: 1

Achthar Denial Packet and Yesterday's Stats

I forgot to blog yesterday. Right before I turned out the lights, I thought of it, but I was too tired.

I had a tiring day yesterday, partly due to the temperature and the fact that my workplace inexplicably had the heat blasting despite the 70-degree weather. But I made it through a very long day--after work, I found out that I had missed a FedEx package. Knowing that I would not be home to sign for it (they deliver before 3:00... who is home before then?), I went down to the facility to pick it up.

The package turned out to be my denial info for the Achthar medication. Certainly not worth the drive. I was hoping it was something good! The insurance company said that I have until November 17 to get them any additional information I want included in the final review. Basically two days. How reasonable of them.

Dr. Gabby was so into this medication. Dr. Harry thinks it is a waste of time at this point. I do not know what to think. I sort of want my insurance company to approve it in the hopes that it will make the process easier if I ever do want Acthar. After they approve it, I might say thanks but never mind. But who am I kidding? I am not going to assemble documentation on why Acthar is superior over Solu-Medrol. I do not have the energy for that. I am barely keeping my head above water with work.

So here are yesterday's stats.

Sensory:

-Pins and needles: 3

-Tingles: 1

-Paresthesias (burning): 2, because I took my pill very late--Closer to the time of the next pill (which I skipped)

-Paresthesias (other): 4, creepy/crawly, electrical, and other odd sensations, which I am now thinking were at least partly because of skipping a dose of gabapentin

-Numbness: 4

-Vision: 3, no change in eyesight, but at least no pain for a few days and few floaters--maybe my eyes are healing themselves. And maybe it is easier to focus on something without my eyes jumping away or going out of focus.

-Nerve pain: 5, left sciatic as always, and I get right sciatic pain that always shows up when I lie down (on my stomach) to sleep

Motor:

-Gait: 2

-Sore muscles: 2

-Fine motor: 3, I felt badly for my friend that I took forever to change her hearing device batteries while we were in the car

-Weak muscles: 6, things keep getting heavier. I nearly dropped a partly-full container of milk. I could not lift it back onto the refrigerator shelf with one hand.

-Spasticity: 3

Cognitive:

-Language processing: 1

-Memory: 0

-Attention: 0

-Confusion: 0

General:

-Fatigue: 4

-Balance: 2, still mostly a problem in the dark

-Sleep: 2, eight hours

-Bladder: 2, mostly better although I did have one little leak. I really needed to use the bathroom, which I finally did. Then I had that burny, it-is-an-infection, still-need-to-go feeling, which I tried to ignore. Then a bit popped out. Just a bit. I have a suspicion that it somehow gets trapped in my urethra and then spills out. I do not know if that is even possible, but it was what came to mind.

Making Lunch Is a Three-Hour Commitment

My legs keep getting kind of numb, and I keep needing to move them, which helps... But then the numbness returns quickly. It is not enjoyable.

Today during church I wore myself out. I did not do as much interpreting as usual, though. I am training a couple of people who are learning how to sign--they are willing, and it is nice for me to have short breaks. That is just for the first hour, though. I interpreted the second hour but was struggling cognitively and physically. After half an hour, I could not hold my arms up, so I had to stop. I asked someone else to take over for the last hour. After church I was surprised at how much difficulty I had walking--weakness strikes again.

So I got some rest during that meeting and for an hour after church. Then I made lunch. Nothing fancy, just pan fried some pork chops, made a box of couscous, and heated up some green beans. Well, that took it out of me! I slept off and on for an hour, took it easy for a while after that.

I had a conversation with my friend that I live with, explaining that she needs to take on more of the cooking burden. It does not need to be anything fancy. She just needs to decide on what to make and cook it herself. Asking me to plan or decide on it is nearly as much of a burden as the actual cooking, because of my cognitive limitations right now. Organizing is hard! Deciding is also hard, maybe because it is hard to consider the choices. I explained that cooking is half an hour's sacrifice for her. For me it is an entire afternoon or evening, since I will be completely wiped out for hours afterward. I think we came to an agreement. It is hard to have those conversations, though. Of course, I cried. 

After resting up for a few hours, I was bound and determined to go to choir practice. Although I was pretty weak, I went. I was glad that I did, because I had a great time! I love music. Playing the piano is hard, and playing the organ is next to impossible, but I can still sing. Maybe not with the breath support I used to have, but I do not know that that is the MS. I have not sung in a choir in at least six years.

Sensory:

-Pins and needles: 3

-Tingles: 1, one rather insistent tingle is hanging out on one side of my right index finger right now. Raaaannndommm...

-Paresthesias (burning): 1

-Paresthesias (other): 2, some electric prickles in my legs, some itching in my hands (hand? now I forget)

-Numbness: 3

-Vision: 3

-Nerve pain: 5, left sciatic as always

Motor:

-Gait: 4

-Sore muscles: 3

-Fine motor: 3

-Weak muscles: 6

-Spasticity: 3

Cognitive:

-Language processing: 1

-Memory: 0--didn't exactly stretch it today though

-Attention: 0

-Confusion: 0

General:

-Fatigue: 7

-Balance: 2

-Sleep: 1, eight hours plus a bit of a nap in the afternoon

-Bladder: 1, it is definitely better for the last two days, knock wood

Some Weird Language Stuff

I spent the evening labeling my blog posts. All of them! Impressive, non?

Sensory:

-Pins and needles: 4

-Tingles: 1, had quite a few in my right palm, near my thumb, also in my left thigh

-Paresthesias (burning): 1

-Paresthesias (other): 2, electric prickles on my thighs, also feels like someone is poking a thumb into my left thigh

-Numbness: 3, lost feeling in my left foot while at the shrink today--sadly, I am so used to it that it was not a big deal

-Vision: 3, still blurry, have some floaters (but do not mind them), still hard to focus, still halos around light/bright things

-Nerve pain: 4

Motor:

-Gait: 3

-Sore muscles: 3

-Fine motor: 3, hard to type!

-Weak muscles: 5

-Spasticity: 4

Cognitive:

-Language processing: 3, I had some difficulty with expressive language today. A few times, I had trouble getting a word out--had to push it out. Apraxia? And I had some paraphasias, like saying hansle instead of handle or just saying the wrong word altogether. Sometimes I corrected myself, and sometimes I did not. And I went on verbal tangents a few times today.

-Memory: 1

-Attention: 0

-Confusion: 0

-Other: I was kind of impulsive today and had little patience while driving.

General:

-Fatigue: 3

-Balance: 2

-Sleep: 2, eight hours although I did wake up a couple of times--sometimes I wake up because it is uncomfortable to sleep on my stomach

-Bladder: 1? need to pay attention

Grieving: I saw my shrink today. It was a good visit. It was one of those times where I had insights as I processed after the visit... but now I cannot remember what the insights were! I am so tired. I will probably remember tomorrow. I do recall disposing of an impressive pile of used tissues as I left.