Hoping I Do Not Lose My Mind

I am really looking forward to Wednesday.

Today I became upset when I was reading a forum thread about compensating for MS deficits... strategies that people use. They ended up being nearly all about cognitive problems. I remembered that woman who sat next to me at the MS dinner, who asked me my name half a dozen times. It was not that she was saying that she had forgotten it and could I tell her again. She seemed to think she was asking me for the first time... every time. I do not want to be that way! I do not want to lose my intellect. So I cried a little this evening. Now I feel like crying again.

Sensory:

-Pins and needles: 3, any place that has even a little pressure. Right now my butt and backs of thighs, because I am sitting back on the couch. I also had pins and needles in my right calf again.

-Tingles: 0

-Paresthesias (burning): 1, I have some in my left foot right now

-Paresthesias (other): 0? Sometimes the line between paresthesias and pins and needles can be hard to distinguish.

-Numbness: 2, usual spots plus semi-numb left thumb

-Vision: 0

-Nerve pain: 3, left leg as always

Motor:

-Gait: 3, slow and stiff. Actually, it was ok in the morning but got much worse in the afternoon. Like a robot this evening.

-Sore muscles: 8, OMG my quads

-Fine motor: 2

-Weak muscles: 5

-Spasticity: 7 for quads, 2 for gastrocs

Cognitive:

-Language processing: 3

-Memory: 3

-Attention: 1

-Confusion: 2

General:

-Fatigue: 4

-Balance: 3

-Sleep: 2, eight hours of totally unbroken sleep. See below.

-Bladder: 1, A thank you note to my bladder: I really appreciated the way you behaved last night. Not waking me up after five hours was really thoughtful of you.

Grieving: I really need to sit down and think. But I do not want to take the time. Avoiding? Or just lazy? 

Gallbladder Pain?

Where do I even begin? I went to bed late last night--keyed up from the ward party, I guess. I don't know. I went to bed at 11:00 but fell asleep closer to midnight. At 3:00 am, I was awakened by severe upper abdominal pain. It tightened for a while, loosened up some, then tightened again. Kind of crampy. Coming in waves. Not fun. It got pretty bad, and it reminded me of gallbladder pain. But I do not have a gallbladder! I had it out almost two years ago.

I took some ibuprofen, but I do not think it helped. The pain stopped around 4:30. Then I had trouble sleeping, because my brain was wide awake. Got close to sleep and then small noises would jolt me... Around 6:30, I turned off my alarm. Who was I kidding? there was no way I would get up at 7:00 for church.

I slept 6:45-7:15, and then I woke up again.. something I heard, I guess. Told my friend that I was not going to church. I tried to sleep but struggled. I was stiff, sore, and exhausted. I drifted in the twilight zone. Finally I slept from 8:00-8:30, and I woke up feeling better. I even had a not-bad dream. I tried to sleep more but unfortunately could not. So I got up.

Like I said, I was feeling better. I went downstairs around 9:00, surprising my friend. She expected me to sleep all morning. I wish! I talked to her and sat around. After about 20 minutes, I hit a wall! From doing basically nothing! That kind of exhaustion is so random. That was how my morning went: okay and terrible.

But the afternoon was much better! And the evening was great. :)

Sensory:

-Pins and needles: 3, lower limbs, including my upper right calf, lateral side/back--pretty much all day without stopping. And of course the pins and needles showed up anytime I sat down.

-Tingles: 0

-Paresthesias (burning): 1

-Paresthesias (other): 1, some crawly/tingly feelings in my lower left back/butt

-Numbness: 2, usual spots plus semi-numb left thumb

-Vision: 1

-Nerve pain: 3

Motor:

-Gait: 3, mostly off balance

-Sore muscles: 7 the first time I woke up but mostly 4

-Fine motor: 1

-Weak muscles: 4

-Spasticity: 3, mostly gastrocs

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 1

-Confusion: 1

General:

-Fatigue: 7/4/2

-Balance: 3

-Sleep: 9, four hours of broken sleep

-Bladder: 1

Great Day!

Today was weird. I had a rough morning, even worse early afternoon, then got better and had a great evening.

Sensory:

-Pins and needles: 2, lower limbs

-Tingles: 0

-Paresthesias (burning): 0 I think

-Paresthesias (other): 1, some crawly/tingly feelings in my lower left back/butt

-Numbness: 2, usual spots plus semi-numb left thumb. Random.

-Vision: 1

-Nerve pain: 4, it was really bugging me this morning. I was sitting and ironing for a service project, and my left leg was hurting and feeling weird... like almost numb. After an hour or so, it got better.

Motor:

-Gait: 2, sometimes my legs weren't listening, weren't going as fast as I expected

-Sore muscles: 3, definitely sore when I try to use them--calves especially, also quads

-Fine motor: 3, still dropping stuff.. I don't know

-Weak muscles: 5, definitely an issue. Opening doors, carrying stuff, walking up stairs, etc.

-Spasticity: 2, still just in my legs

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 0

-Confusion: 1

General:

-Fatigue: 1-7, I was ok (3) for a when I woke up and went to the service project, where I was asked to iron. I knew that I could not stand for more than five minutes, so I grabbed a chair and lowered the ironing board. It was hard to iron because my arms are not very strong, but I did ok energy wise. Then toward the end of the event, I got tired. Driving home I felt very tired. When I arrived home, I flopped on the couch for several hours. That would be the 7 time. But I got better. Resting all afternoon must have helped. In the evening I felt really good! I would seriously say fatigue 1 for a while.

-Balance: 3

-Sleep: 2, eight hours

-Bladder: 2

I was really disappointed that my shrink canceled on me an hour before our appointment. She said she would call me this afternoon to reschedule, but she did not. I was really looking forward to seeing her. 

Good Day Again

I had another good day today. I guess a good day is when I'm not totally exhausted and my pain isn't severe.

Sensory:

-Pins and needles: 2

-Tingles: 1, right leg down outside/back of calf. And left forearm (underneath).

-Paresthesias (burning): 2, feet as usual, this time also on the medial part of my heel/ankle

-Paresthesias (other): 2

-Numbness: 2, the usual. Kind of wondering about the outside /back of my right calf--same area as the tingles. Also pins and needles there.

-Vision: 1, lots of floaters today! Distracting sometimes, but mostly I could ignore them.

-Nerve pain: 1

Motor:

-Gait: 4, stumbling, catching my left toe, having some trouble walking straight. And sometimes very slow! Haha, like my legs were just not getting the message to move FORWARD.

-Sore muscles: 3, calves, quads--worse when I wake up (very stiff) and in the evening (very tired).

-Fine motor: 3, dropping everything. I don't think it's a hand strength issue. Just clumsy hands.

-Weak muscles: 4, still having trouble with stairs, walking through a parking lot, etc.

-Spasticity: 2, most of the day it was just my right calf (although now all four of the usual areas)

Cognitive:

-Language processing: 1

-Memory: 3

-Attention: 0

-Confusion: 2

General:

-Fatigue: 4

-Balance: 3

-Sleep: 1--more than eight hours! I think it was good sleep, too. I do not think I had bad dreams (or at least not terrible ones).

-Bladder: 2

How Could I Forget??

Oh my gosh, I totally forgot to blog this. Wow.

When I arrived at the MS dinner the other night, I went straight for the drug reps. Why not get more information?

First up was Pfizer, which was advertising the injectable disease-modifying drug (DMD) Rebif. The nurse asked what I am on--nothing. I told her that I am just treating symptoms right now. She asked if my neuro feels that I do not need DMDs. Um, no. I told her that is not it; my neuro is a little busy since she just switched practices*. And that she is maybe a little more focused on herself than on patients**. I said this sort of ruefully, "oh well." I quickly added that I will see a neurologist at [famous hospital] MS Center next week. She asked who and then said he is good.

Then she asked who my current neuro is. I told her it is Dr. Gabby.

Her eyes narrowed, and her mouth twisted in annoyance. Or hatred? She physically took a step back. She said that it is good that I am switching. She said that she has worked with many patients who had Dr. Gabby and... then she bit her tongue.

This is the third medical professional who has had something bad to say about Dr. Gabby. I am so glad I made the decision to switch, although I ended up with a bad neuro again in Dr. Ronnie. But hopefully the new guy will be good. I just have to keep trying.


*Busy with her new, money-generating patients at her husband's pain management clinic.

**Referring to her weekly Questcor-funded lectures shilling Acthar... and pushing me to go to her lectures after I have just gotten through expressing my frustration that I am too sick to go anywhere or do anything. I remember calling her from the ER and having her tell me I would really enjoy her lecture that day. I AM IN THE ER WITH A CSF LEAK, YOU IDIOT. Um, no, I think I will not be able to attend your lecture.

Those MS People Kind of Freaked Me Out

So the MS dinner last night... Man, those people are bad off. They were stumbling all over the place. I was chatting with a deaf woman, and she asked me my name and if I'm hearing at least three times. I finally wrote it down for her. Thinking about those people scares me. When will I be like them?

Nevertheless, I had a good day.

Sensory:

-Pins and needles: 1

-Tingles: 1, left thumb, arm near elbow

-Paresthesias (burning): 2, feet and also quads. It's different than sore muscles--really feels like burning, like in my feet. I don't know what to think. I also had it yesterday or the day before. I tend to second guess myself and not record symptoms the first time they happen.

-Paresthesias (other): 2, tiny electric shocks in my left sciatic nerve behind my thigh

-Numbness: 2, the usual. Plus I feel like the lateral half of my right pinky might be on its way out.

-Vision: 1, no focusing problems today, just a few floaters

-Nerve pain: 1

Motor:

-Gait: 2

-Sore muscles: 3, calves, quads--worse when I wake up (very stiff) and in the evening (very tired).

-Fine motor: 2

-Weak muscles: 4, still having trouble with stairs, walking through a parking lot, etc.

-Spasticity: 3, both areas but more calves today, esp. right

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 0

-Confusion: 2

General:

-Fatigue: 4

-Balance: 2--I think it is better at night. I did not need to hold onto the walls when I got up to go to the bathroom last night.

-Sleep: 4, 7 hours--6 in a row then another half hour... awake.. another half hour.. yeah, I suck. But I really took it easy this morning and rested a lot.

-Bladder: 2

I got emotional today when a friend said that I should not feel pressured to go with her to a concert next Saturday. Because I definitely did feel like I needed to say yes! When she said that I did not, I was so relieved (or something) that I cried a little.

And six more days to the MS Center appointment. I cannot wait.

MS Dinner and Panel Q & A

Tonight I went with my sister and two friends to an MS dinner, which featured an expert panel willing to answer questions. These were the notes I took:

Expert 1
-T-cell vaccine studies have not been positive so far.
-One question is why eye problems exist when the eye has no myelin.
-T-cells can react against myelin, but the question is whether it is myelin basic protein only or another myelin protein.
-So what causes the T-cells to damage the eyes? Are they targeting the nerve cells themselves?
-Stem cells from bone marrow can help repair myelin in the brain.
-Treatment response (DMDs) depends on "what perfect storm created your MS."
-Autoimmune diseases are commonly triggered by antigens--proteins in blood.
-Few people have been able to replicate Zamboni's CCSVI work.
-Please do not have surgical procedures until we see data that the CCSVI theory is true. The risks are too great for these surgeries. A few people have died. [My rebuttal would be that people have died from the MS drugs as well.]
-Autoimmune thyroid disease is more common in people with MS.

Expert 2
-Relapsing-remitting MS is all about inflammation. Primary progressive MS obviously has no relapses, and inflammation is minimal--different than RRMS. PPMS usually starts with lower limb stiffness, difficulty walking. Gilenya is being tested for people with PPMS at Johns Hopkins. Tysabri is being trialed for people with SPMS at UMD.
-Zamboni's study found that 100% of people with MS had CCSVI. Really? Every single person?
-Encourage you not to pursue it--dangerous.

Expert 3
-Epstein-Barr virus increases the risk of having MS.
-The VA is looking at military personnel, especially those on ships, for the effects of lack of sunlight exposure.
-Nortriptyline is a medication that modulates pain the CNS. It changes the ability of the brain to receive pain.
-The National MS Society has funded CCSVI research. There is no standardized approach to the research, so it has been hard to replicate the CCSVI results.
-The Buffalo CCSVI study was done by a Zamboni trainee.
-The is not a single antigen responsible for MS. Need to see it as a global response (something about antigen spread) and modulate that.

And today's data....
Sensory:

-Pins and needles: 1

-Tingles: 1, left thumb

-Paresthesias (burning): 3, feet

-Paresthesias (other): 2, prickles in left sciatic nerve

-Numbness: 2, the usual

-Vision: 2, more floaters today I think

-Nerve pain: 2--but it always gets much worse in the evening when I'm going to bed

Motor:

-Gait: 4, it was not terrible in the morning but bad by the evening

-Sore muscles: 4, calves, quads

-Fine motor: 2

-Weak muscles: 4

-Spasticity: 3, both calves and quads

Cognitive:

-Language processing: 2, got annoyed with certain speakers

-Memory: 3

-Attention: 0

-Confusion: 3

General:

-Fatigue: 3 most of the day but 6 in evening

-Balance: 4

-Sleep: 6, I got six hours of sleep AGAIN. This time because back pain from my period woke me up. I hate when I starts in the middle of the night, because I can't get ahead of the pain with ibuprofen. Anyway, I ended up not being able to sleep from pain and then just not being able to sleep. Now I can't wait to go to bed!

-Bladder: 2

What Causes MS?

The short answer is that no one knows what causes MS. Seriously. Sigmund Freud and others chalked it up to feminine hysteria. Frankly, most neurologists today seem to do the same until it is severe enough to show up on an MRI. MRIs are not sensitive to lesions at all--they kind of need to be knocked over the head with axonal damage.

For the last 40 years or so, MS has been assumed to be an autoimmune disorder. The immune system attacking the person's body. However, no one understands how or why this happens. It is amazing how doctors and pharmaceutical companies create videos such as this one, when the autoimmune theory is purely conjecture.

It is big bucks conjecture, though. MS drug therapies cost upwards for $40,000 per year. Imagine! And the best they can do is slow things down a bit for some people. For many people, they do absolutely nothing. Some people even get worse with the drugs--probably because of side effects. Every single one of these drugs functions by interacting with the immune system. They are called immunomodulators--trying to modulate the immune system. Patients have to stay on these drugs for the rest of their lives in order to slow the increase of disability. There is no cure for MS.

Blood flows throughout the body, right? It is not supposed to get into the brain. It is supposed to stay in its little channels--arteries and veins. But the autoimmune theory says that for some reason the body goes nuts on itself and is suddenly able to send immune attack cells from the bloodstream into the brain.

If the autoimmune theory is correct--why does the body attack itself? What sets it off? How do the immune cells get through the blood-brain barrier? Why do some people have frequent attacks and others go as long as 25 years between attacks? Does the immune system forget what it was doing? Maybe it has MS.

A new theory is called chronic cerebrospinal venous insufficiency (CCSVI). This theory has been laughed out of scientific circles for the last two years. The funny thing is that it is not a new theory. It is a resurrection of an old theory.

CCSVI theory proposes that MS is caused by veins that do not allow blood to flow properly. They back up, causing the pressure to increase in certain areas of the brain and spine. The increased pressure causes the body to develop new, tiny veins to try to get the blood out of where it is not supposed to hang out. These new veins are pretty crappy. But the problem is that the original veins were crappy--that is why they did not let the blood flow through them properly. And this blood flow problem "forces" blood into areas where it does not belong. Immune cells, toxins, and other not-brain-friendly stuff are in the blood. They go to town when they are let loose in the brain or spinal cord.

Autopsies have shown that the large veins in the necks of people with MS frequently have malformations. Sometimes there are issues with multiple branches, implying poor drainage efficiency. But frequently there are problems that would be impossible to see except with autopsy. Small flaps or membranes that impede the flow of blood.

This theory is controversial, allegedly because it is not supported by science. But frankly, the autoimmune theory is not supported by science. I think the theory is controversial, because it threatens the establishment. It would move MS treatment from the domain of neurologists to that of vascular surgeons.

Some vascular surgeons (including the one who came up with the CCSVI theory, an Italian man whose wife has MS) have been performing angioplasties on people with MS, with mostly good results. It is complicated. But now other scientists have begun supporting the theory. If it is correct, it would change the face of MS intervention.

Good Day, Yay!

I had a good day today. :)

Sensory:

-Pins and needles: 1, feet

-Tingles: 0

-Paresthesias (burning): 1, feet

-Paresthesias (other): 0

-Numbness: 2, the usual

-Vision: 2, the usual--still having some problems focusing, but I think it's better today. Worse as the day goes on and I get tired.

-Nerve pain: 1

Motor:

-Gait: 3, balance was really affecting it today, as well as spasticity

-Sore muscles: 3, calves, quads

-Fine motor: 2

-Weak muscles: 4, even a few stairs are tough

-Spasticity: 2--mostly right leg today, both calf and quad

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 0

-Confusion: 2

General:

-Fatigue: 4

-Balance: 4

-Sleep: 6, I got less than six hours of broken sleep. I laid in bed for a couple of hours last night, because I kept forgetting that I wanted to sleep. I I was just "hanging out" in bed. And I was so tired! It seriously makes no sense that I could lie in bed and forget to sleep. So then I fell asleep but woke up frequently. Realized it was too warm. Turned on a fan. After a while I fell asleep and got four or five hours straight. I woke up with bad dreams. More sleep. More bad dreams. Sleep can be frustrating sometimes, but I didn't let it get to me too much.

-Bladder: 2

Better

My brain was functioning better today, and I wasn't as tired. I had an easy day at work. Afterward I did some grocery shopping. I went slowly, and I was there for an hour--going slowly helped. I need to go slowly not only for my legs but for my slow brain!

Sensory:

-Pins and needles: 1, had some in my right big toe--so random it makes me laugh

-Tingles: 0

-Paresthesias (burning): 1, both feet, again including right toes

-Paresthesias (other): 2, vibrations in my left foot a few times. Strong.

-Numbness: 2, the usual

-Vision: 2, the usual

-Nerve pain: 1, left sciatic

Motor:

-Gait: 2

-Sore muscles: 2, calves, quads (yesterday after I blogged my legs started hurting SO BADLY)

-Fine motor: 3, with one thing new: when I try to tap the buttons on my phone or touch something gently, I often double tap without meaning to. It is pretty annoying and weird.

-Weak muscles: 4

-Spasticity: 2--gastrocs, rectus femoris, bilaterally

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 0

-Confusion: 1

General:

-Fatigue: 6

-Balance: 3

-Sleep: 3, 7.5 hours but also laid in bed and rested for a while after I woke up (was woken up, I should say)

-Bladder: 2

Cray Cray

I am a blogging fool today, hm?

I found the following on an MS forum. It was written by a doctor who happens to have MS herself.

*****

I'm not sure we have covered this topic lately, but since I recently went through it, I thought it might be time.  MS affects more than sensory nerves, muscles, internal organs and such.  It is very much a gray matter disease also.  It can affect our thinking (or lack thereof) our percerptions, our emotions, our attention spans, and our control over our responses. 

One of the things that people with MS frequently complain about is sudden and inappropriate anger at relatively minor situations.  A situation that might otherwise urk us can suddenly become a massive breaking point in which we abruptly begin yelling or arguing or acting out of character.  Yesterday my sister did something that I have been annoyed about for a long time.  Instead of discussing my hurt feelings with her, like I have before, I went berserk, and then both of us were crying.  Where in the heck did that come from?  My response was all out of proportion to the event. 

The converse can also happen.  A serious situation can evoke gales of inappropriate laughter that we can't control.  This response can be very embarassing.   

Inappropriate and exagerated emotions are actually frequent in MS.  It is called the Pseudobulbar Effect and was described decades ago.  It can even be a clue that someone has MS. 

One of our earliest members had an episode where she suddenly became unable to walk.  She was in the ER and they were trying to see whether or not she could even bare weight on her legs.  She was laughing hysterically.  After assuring that she wasn't high, the doctor pulled her husband aside and told him that he was suspicious of her having MS - which she was eventually diagnosed with. (Good pick up!). 

This is something that our family and friends should probably know about.  One so that we don't alienate everyone around us, and two, so that they don't haul us away.  We also should know about it, so we don't start considering basket-weaving class.  Having just had such an epsiode, it makes you truly question your sanity.  It's good to know that there is a well-known and physiologic  basis for it. 


*****


I do not think I am cray cray yet, but I am trying to be aware of this.

Fatigue = :(

Fatigue is probably the most disabling symptom of my MS (everyone's is different), but it is unfortunately also an invisible symptom. Let me tell you about it.

There are several kinds of fatigue in MS.

1. Lassitude. This is a kind of fatigue that is unique to MS. Let me be blunt: people who do not have MS have no idea how this feels.

This is what the MS Society says about lassitude (and my thoughts):
-Generally occurs on a daily basis (check)
-May occur early in the morning, even after a restful night's sleep (this is so frustrating, because you cannot count on being able to do what you plan on any given day)
-Tends to worsen as the day progresses (true, although it can get better with rest)
-Tends to be aggravated by heat and humidity (such as a bath, ahem)
-Comes on easily and suddenly (I call this "hitting a wall")
-Is generally more severe than normal fatigue (YES, "fatigue" does not really convey the severity)
-Is more likely to interfere with daily responsibilities (unfortunately true)

Lassitude is probably the hardest thing about having MS (which I can say now that my burning nerve pain is under control, lol). Lassitude is the voice inside me that screams, "Lie down! Now!"

2. Medication side effects. Although one of my medications commonly causes drowsiness, I do not think it does that to me.

3. Sleep problems. They are very common in MS. I guess I have sleep problems, but I think not severe. I have nothing but bad dreams lately--it is hard to fall asleep quickly when I wake up terrified. I have been careful not to drink water for a few hours before bed, which reduces the nocturnal potty trips.

4. Other medical problems. When I had a UTI, I was a million times worse. I couldn't sleep, I kept crying, and my brain was not functioning properly. Besides being tired and all. I remember calling my best friend, who at first talked to me normally but soon began speaking to me like a child. She was trying to convince me to go to a doctor. I have no idea why I did not want to go, but it made sense to me at the time.

5. Weakness. Weakness and fatigue are different. Muscle weakness can make everything harder to do. If you have to work harder to do everything, you will tire more quickly. Here, here.

6. Cognitive difficulties. Have you ever felt tired after reading a "hard" book or attending a difficult class in college? What if everyday tasks were as cognitively demanding as that? I sometimes have to think hard to figure out where the milk is, how to open my email program, or what all those numbers are on the microwave.

7. Deconditioning. This is the "use it or lose it" principle--when you sit around all the time, you get tired more easily when you do decide to be active. It is hard to handle this one considering all of the other reasons for fatigue. Deconditioning requires activity to decrease fatigue. But with the other reasons/types of fatigue, activity will make fatigue worse. I do not think I am terribly deconditioned at this point, but maybe somewhat.

Dumb!

I did a really dumb thing today.  I took a bath.

It was so cold in my home. Trying to save on electricity, we do not turn on the heat unless we absolutely have to. We have been heating the place in the evenings using the fireplace, but I did not want to start a fire, thinking that we would be leaving in a couple of hours to go to that dinner party (which I cheesed on anyway). Well, I got chilled to the bone this afternoon. So I took a bath.

I thought it would be okay if I just stayed in until I got "normal" warm again. But I got tired quickly. MS lassitude tired. Then I was too tired to get out... but staying in made me ever more tired. Bad cycle.

Sensory:

-Pins and needles: 1, just when I compress a nerve while sitting

-Tingles: 3, lateral edge of left hand

-Paresthesias (burning): 1, both feet--into right toes today

-Paresthesias (other): 0

-Numbness: 2, I keep touching my little toe to see if it's still numb. Of course it is. I even poked at it with a needle, and I seriously did not feel anything. Weird. That needle hurt when I poked an area that was not numb!

-Vision: 2, floaters, focusing

-Nerve pain: 1, left sciatic nerve

Motor:

-Gait: 3

-Sore muscles: 2, calves

-Fine motor: 2

-Weak muscles: 4

-Spasticity: 2--gastrocs, rectus femoris, bilaterally

Cognitive:

-Language processing: 3, had trouble understanding some things at church: General Authority quotes, people whose talks or lessons were disorganized, people who paused in the middle of or revised sentences frequently, and people whose articulation was not clear. I could not interpret one talk, because I could not understand it at all. Interpreting was very difficult during the first hour of church today, a little better during the second hour (probably because the first 20 minutes of that was a video that had sign language on it), and much better the third hour.

-Memory: 4, this impacted my interpreting. I cannot hold as much in my head as I used to.

-Attention: 1

-Confusion: 1

General:

-Fatigue: 8 is what it got to with the bath, but a lot of the day it was more like 6

-Balance: 3

-Sleep: 5, 7 hours but broken, was awake for a while, and had too many bad dreams. I think I only have bad dreams now, which is totally atypical for me. I normally have good dreams, with a bad dream maybe two or three times per year.

-Bladder: 2

I Gave In, and It Felt Good

Today, for the first time, I canceled an activity because of my MS.

I have been putting a lot less on my calendar, knowing that I do not have the energy to do everything I used to do. However, once something was on my calendar, I would not cancel it. I have pushed and killed myself to get all of my obligations done, including social obligations.

I was supposed to go to a "welcome back from Afghanistan" dinner party this evening. It was for the family I saw yesterday, whose children I babysat (with a friend). Today I was doing poorly for part of the morning, got better, and then got worse. I saw barely able to move this afternoon, I was so tired. An hour before the party, my friend found me in bed, where I had been for a couple of hours. I had been reading but got too tired for that, so I was just lying there. My friend suggested that maybe I should call and say that I was not feeling up to it.

I really did not want to do that. I wanted to see them! It was not going to be a fancy party--could I not make it through?

I realized that I could not.

After I canceled (and they were very understanding, knowing that I have MS), I felt such relief. I could bum around the house, resting up for another work week.

I need to practice saying no. No, I cannot do that. No, I am not up to it. It is hard, though, because I crave company. I have absolutely changed that way. No more a loner, I want to be with people. I do not know how to balance my need for company with my need for rest.

Did Too Much

Uhh... Today was kind of not great. I tired myself out. It's so frustrating that I'll do less than I would have done on any given day before MS, and I'll be completely wiped out.

This morning I went to play with an almost-two-year-old, which I videotaped for a presentation I will be giving. I stayed maybe half an hour. Wiped. Now, I was not driving, so I was able to rest in the car.

Next stop, Home Depot. Needed fireplace tools. But first I headed straight for the bathroom, because apparently one lactase pill was not enough for what I ate for breakfast. I stood and looked at the tools for about ten minutes then had to sit down. Standing is worse than walking, if you can believe it.

Then we went home and rested for 15 minutes. Then it was off to babysit a friend's adorable, autistic three-year-old and adorable, hopefully-not-autistic baby. Why did I agree to babysit? Hm. Because I'm a yes person?

Driving to their house (again, that would be riding, not actually driving), I just wanted to go home. Or sleep right there in the car. The half-hour drive was a good rest, I guess.

It was nice to see those friends, whom we haven't seen in a few months, but gosh, those kids wore me out. The funny thing is that they weren't demanding at all. They are truly wonderful kids. The three-year-old chattered nonstop, but he was quite self sufficient with play. He loves to play alone. The only thing I had to do for him was feed him and make sure he kept his clothes on. Or at least his underwear... priorities. I tried interacting with him, but he's only interested in interactions that involve requests: food, TV, toys, etc. I did pick up the one-year-old sometimes, because he is quite huggable. I played with him when I could, because he likes interaction. To be honest, most of the time I laid on the couch, watching Fraggle Rock and wondering how women with MS raise children. My eyes could barely focus, I was so tired. We ended up babysitting for four hours.

Sensory:

-Pins and needles: 2, left leg, both feet

-Tingles: 2, arms

-Paresthesias (burning): 1, both feet

-Paresthesias (other): 0

-Numbness: 2, just the permanent areas--I don't think I was losing feeling from sitting. I did wake up with my right forearm and hand completely numb, and it was painful when sensation returned.

-Vision: 2, more floaters today, as well as trouble focusing (maybe from fatigue)

-Nerve pain: 0--maybe I was too tired to notice

Motor:

-Gait: 3, kind of ataxic? Or maybe just from stiffness.

-Sore muscles: 3, calves, quads

-Fine motor: 3--still so hard to fingerspell! But I rocked a coloring page with that little boy.

-Weak muscles: 5, I was afraid I was going to fall this afternoon.

-Spasticity: 2--gastrocs, rectus femoris

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 1

-Confusion: 2

General:

-Fatigue: 8

-Balance: 4

-Sleep: 3--7.5 hours

-Bladder: 3--Mostly just the usual. And once this morning I had sudden urgency then couldn't get started! Whatever.

New Urologist

Sadly, the fantasticity (c) of yesterday did not continue.

I had a urology appointment today, for a 6-month follow up for my kidney stone and for my MS bladder issues. No specific concerns on the kidney stone front, although the doctor shared that I have a 50% chance of having a second stone in the next five years. Great...

She thinks I have demyelination in a nerve going to the bladder. Right, so she thinks my bladder issues are almost certainly MS related. She could give me a pill, but she wants to hold off until I'm on a disease-modifying drug. In fact, she was shocked that I'm not already on one.

Sensory:

-Pins and needles: 2, left thigh

-Tingles: 1 had a shooting tingle in one of my forearms

-Paresthesias (burning): 1, both feet

-Paresthesias (other): 1, electricity feelings in my left thigh, some buzzing in my feet--feels like a cell phone vibrating

-Numbness: 3, have lost feeling in my legs and feet sometimes. The lateral half of my left baby toe (along with part of my foot near it) is still numb all the time. And you're going to think I'm crazy, but I realized last night that there is a little numb patch on my RIGHT baby toe. What's up with that?

-Vision: 2, because of some minor focusing issues. And the floaters. I'm seriously starting to wonder why they are hanging around. Not getting worse, not getting better... just there. At least they are easy to ignore.

-Nerve pain: 2, left thigh--ah, sciatica

Motor:

-Gait: 3, bouncy, stiff

-Sore muscles: 2, calves, quads

-Fine motor: 4--I had trouble taking a pen from a cup at the doctor's office, trouble writing, fingerspelling

-Weak muscles: 4

-Spasticity: 3 for right gastroc, 2 for left gastroc, 1 for both quads

Cognitive:

-Language processing: 2

-Memory: 3

-Attention: 0

-Confusion: 2

General:

-Fatigue: 6

-Balance: 4

-Sleep: 2, I got 8 hours

-Bladder: 3

What's up with having a not-so-good day after getting eight hours of sleep? I didn't even wake up with a nightmare! I have a lot of bad dreams lately. Like every night.

Uhhh.... I can't remember what else.