Pretty Good Day

Sensory:

-Pins and needles: 2

-Tingles: 3, in my left hand today

-Paresthesias: 5, still feet (esp left) and left leg on fire

-Numbness: 1

-Vision: 1, still kind of up and down but really NOT bad--seems more like perception than physical vision, if that makes sense

Motor:

-Gait: 3--partly balance, partly muscle stuff

-Sore muscles: 4, the backs of both legs, especially knees--spasticity

-Fine motor: 2

-Weak muscles: 4

Cognitive:

-Language processing: 2

-Memory: 2

-Attention: 1

-Confusion: 2

General:

-Fatigue: 5

-Balance: 3

-Sleep: 2, got a cool 8 hours!

-Bladder: 3 I guess

-Anxiety: 1

-Vertigo: 0, and I'm reeeeally hoping it was the Solu-Medrol or the Nuvigil

I found out that Dr. Rob already has my MRI report. I want to know what it says!!! I have to wait until Tuesday. Talking with my MS friends and doing research... I'm going to speak with Dr. Rob about ordering new spine MRIs, so I can go to the 3T place. 1T is worthless for the spine. 1.5T might show something, but 3T is really needed. So... Yeah, I probably need it before I see the specialist.

ACTH

ACTH, short for Acthar (honestly, I think it's easier to say Acthar than ACTH), is on the horizon.

Dr. Gabby FINALLY faxed my letter of medical necessity, almost a week after we discussed it. Of course, the Acthar people somehow didn't get the fax, which was on Wednesday. Today I had the secretary fax it again, and the Acthar people got it.

This is their website, if you are interested: http://www.acthar.com/

I asked the Acthar rep how much it would cost, and of course she couldn't tell me. I asked if it would be a 20% coinsurance, like Solu-Medrol, and she said, "Oh, it's much more expensive than Solu-Medrol." She did say that they have a chronic disease fund, so I could see if I qualify for help with the coinsurance or copays.

Yikes. I am so in debt, but how can I put a price on my health? I just hope Acthar helps me feel better. It's easier to handle getting those big bills when you know it was worth it. Unlike my 1 Tesla MRIs! But you know, I pay my tithing and have done for years. I just have to trust that things will work out.

MRI Fail

Alright, so you know how I was saying that I learned that I need to have 3.0 Tesla MRIs? That means a stronger magnet. Well, I called to ask the strength of my previous MRIs. I remember that Dr. Gabby had sent me to the second place, AMR-C, for my spine w/contrast MRI, because she said its machine is better.

Wrong! Dr. Gabby, you lose.

-June, brain w/ and w/o contrast: 1.5T at ADV-C
-August, spine w/o contrast: 1.0T at ADV-C
-August, spine w/ contrast: 1.0T at AMR-C

One Tesla!! Come on!! I am paying $800 for an MRI that was not even strong enough to find MS lesions. How depressing.

Strangely, I am not depressed. Just frustrated.

However, I have reached my deductible for this year, so at least any future MRIs will be a 20% coinsurance. I think it will be around $250. Better than $800. So I want to have more MRIs before the end of the year, if I will need them.

I am going to speak with Dr. Rob about this on Tuesday and explain to him about the importance of magnet strength when it comes to MS lesions.

I can't believe these irresponsible neurologists let me waste my money AND based their clinical judgments on these worthless tests.

Ho. Ly. Crap.

The medical bills have begun to arrive. I can't believe this! $813 for one set of MRIs! $404 for CT and bloodwork! I haven't even received the bills from the other MRIs.

What really gets me is the the MRIs from that day were totally useless, I have learned, because they were on a 1T MRI machine. Probably too weak to find lesions.

And I knew I didn't need the CT that day. Somehow it's worse when you don't receive any benefit but still have to pay for it.

Well, so much for paying down the credit card debt I incurred by using that for food, gas, etc. so that I could put a downpayment on my condo. I guess it's just not in the cards for me to be in the black with money. Every time I get out of debt, something happens and I'm right back in.

As if MS weren't depressing enough...

MRI Strength

My first MRI was at a place we'll call ADV-C. That was my of brain, with and without contrast.

Then I had an MRI of my entire spine, without contrast, also at ADV-C.

I saw Dr. Gabby, who sent me to a different place, AMR-C. She said the machine is much stronger there. That's where I had my MRI of my cervical and thoracic spine, with contrast.

So now I need to have another MRI of my brain. Of course I wanted to go to the place with the stronger machine. I made an appointment at AMR-C for Friday.

I posted about that on an MS forum. Another MSer asked the strength of that machine. I had assumed it was strong, based on what Dr. Gabby had said. StrongER, anyway. I know from my MS research and from the forum that I should have accept any machines weaker than 3T. 1T and 1.5T machines are really not going to find lesions. At Johns Hopkins they use a 7T machine in their research.

I called AMR-C and asked if it's 3T. NOPE.

So I suppose it's 1.5T... or 1T? And ADV-C is even weaker. I had my brain MRI on a weak machine. Kind of a waste. And they still found lesions. I wonder what they would have found on a 3T machine.

I googled and found that ADV-O, about half an hour away, has a 3T machine. Score! I made an appointment for tomorrow. Tomorrow! That means I'll have to go to Dr. Rob's office to get a different order form (different company), but I don't think that will be a problem.

Yay!

Not that I'm looking for more lesions. But I am looking for any lesions I do have to be identified.

Good Day

Sensory:

-Pins and needles: 1--feet

-Tingles: 2

-Paresthesias: 5, still feet (esp left) and left leg on fire

-Numbness: 1

-Vision: 1

Motor:

-Gait: 2

-Sore muscles: 5, the backs of both legs, especially knees--spasticity

-Fine motor: 2

-Weak muscles: 4

Cognitive:

-Language processing: 1

-Memory: 1

-Attention: 0

-Confusion: 2

General:

-Fatigue: 5, but I did a lot this morning

-Balance: 3

-Sleep: 5, got 6 hours--burning leg and foot kept me up until midnight

-Bladder: 3 I guess

-Anxiety: 3

-Vertigo: 0--nada!

Great Day (Except for the Fire)

Sensory:

-Pins and needles: 1--feet

-Tingles: 1

-Paresthesias: 7--oh, the burning in my left foot and leg! And some in my right foot, the area that usually has pins and needles

-Numbness: 2? burning makes it hard to notice other feelings (or lack of) in the usual area

-Vision: 2--same as yesterday, it started out well and declined a little

Motor:

-Gait: 1

-Sore muscles: 6, the backs of both legs, especially knees--spasticity

-Fine motor: 2

-Weak muscles: 6

Cognitive:

-Language processing: 0

-Memory: 0

-Attention: 0

-Confusion: 2

General:

-Fatigue: 4

-Balance: 3

-Sleep: 1--got almost 9 hours!

-Bladder: 3 I guess

-Anxiety: 1

-Vertigo: 1, only happened once!

It was a great day except for that darn burning. It is definitely worse when I'm sitting, no question. I think it's my sciatic nerve. How that relates to the bottom of my foot, I'm not sure. I guess the foot nerve's connected to the leg nerve...

Good Internist?

I saw the new internist, Dr. Rob, today. I liked him! He was a little odd... like autism spectrum odd... but I'm cool with that.

He is not just assuming that I have MS. He wanted to hear the argument for it. I guess he accepted the diagnosis (he didn't say but stopped questioning). Then he wondered if I have primary progressive MS, not relapsing-remitting. Since it's been four months. Long flare. Or that I have something wrong in addition to MS.

He is not just assuming all of my problems are from MS. He pressed on some places on my back and knees, and sometimes it HURT. He seemed to have thoughts about it but didn't share. He did wonder aloud why I would have pressure points like that, because it wouldn't be from MS.

He questioned my medications. Even the Protonix, which no one has questioned before. He said it's a strong medication to be on at my age. He didn't say to stop taking it, just wanted to know what was up. And he questioned the gabapentin, saying I'm not taking enough. THANK YOU! He asked if it helps. I told him that it did, but I'm not sure it does now. He didn't think it would, at that strength. He increased me from 600 mg daily (300 am and pm) to 600 mg 3x day. I'll increase slowly, make sure I don't get too tired. He said I could try Lyrica if the gabapentin doesn't help me.

He found that my left leg is weak. I could have told him that. I also could have told him why: spasticity. That's my guess, anyway, but I didn't say so. Next week I'll ask whom I can see about that, like maybe a PT. We didn't have time for everything today.

He wants another brain MRI, with and without contrast. Oh boy. I made an appointment for that on Friday.

At my request, he referred me to Dr. Hilary for urology. I am supposed to have a 6-month follow up on my kidney stone, but mostly I want to talk MS bladder. Dr. Gabby said I have a spastic bladder. I feel like I'm not fully emptying it or something. Or it's thinking it needs to go when it's not totally full. And weak stream. Whatever, it's not normal.

I will see Dr. Rob again next Tuesday.

I am so blessed to be able to see him. He's been closed to new patients for over a year, but his secretary, a member of my church, got him to take me.

Stop the Fire

My left foot and even leg were just burning and burning last night. It got bad enough that I was near tears. Sitting makes it worse, but what can I do, stand all day? More like lie down all day. Lying on my stomach was good, made it decrease enough that I could sleep.

And sleep I did, eight hours, only getting up once. Ahhh... My head is not tired at all. My legs are. They're so wimpy. And now that I'm sitting, my foot is starting to burn again, and the back of my leg. It's along my sciatic nerve.

Dr. Gabby has not sent my letter of medical necessity for ACTH!! She told me on Thursday that she would do it on Friday. It's Tuesday! Come on! I asked the secretary to stay on her about it today. After that letter is sent, apparently it can take 5-7 days to go through insurance. Another week of burning? Please no.

What I Need

People ask what I need or what they can do for me. I'm terrible at answering those questions.

I'm not used to needing anything from anybody. I am smart--I know a lot and can figure things out or seek out answers. I am strong--I can move stuff around and lift what I need. I am talented--I can do anything with my hands, from playing the piano to stitchery to baking. I am hard working--I have become an expert in several areas of my field and have always had side jobs in addition to my full time work. I am caring--I do a lot for friends and volunteer to babysit for people's kids. I am independent--I don't want help to get up and I like to go out and do things on my own.

I am the one you call when you need someone to teach a class, consult on an unusual kid, or accompany your solo.

Wait, change the am to was. I'm not any of those things anymore!

Shifting from being the giving one to the taking one is hard. I don't know what I need. I don't want to accept offers for dinner or stuff like that, because I need it every day. Or I don't. Ugh, I don't know. I am exhausted every day. I'm sick every day. It doesn't go away. It gets worse and better, but it doesn't go away. What difference does a dinner here and there make.

Well, I don't know, because I haven't tried it. I did enjoy when someone made me bread and someone made me sweet rolls.

I ask for prayers, and that is good. It helps. When I asked for prayers specifically to help me make treatment decisions, I found some good resources and was able to figure out what I want. I think!

I think one problem is that I don't really understand what "need" means. I want to continue doing everything, even if it kills me. I go and go until I'm in tears. If I can do it, I don't need help. Maybe I should consider that if something is so hard that it takes all my energy to do it, I do need help.

Yesterday my visiting teachers asked what they can do for me. Instead of saying, "Oh, nothing, I'm fine," I asked them just to check in with me every now and then. I felt oddly empowered, I guess because I knew what to ask for. And I knew that I was asking for something that really would help me.

Yesterday evening someone emailed to say that I had looked tired at church, and she wanted to make sure I was OK. I was touched and felt so much love from her message.

It was amazing how that email made me feel. Someone had noticed me! I am all alone in my insane body, but that made me feel a bit less lonely. And I realized that I had told my visiting teachers the right thing: checking in with an email or text reminds me that people are out there who care.

I told the sweet woman who emailed that what I really need is love and friendship. And prayers.

So after four months, I've finally realized what I need. I guess I'm a slow learner.

Better Today

Today was much better than the last week... thank goodness. I went through periods where I felt very sick, and then I would be sort of okay. Just MS-y. The sick feeling is different, and I still wonder if it has to do with blood sugar or if I've caught a bug.

Sensory:

-Pins and needles: 2--feet

-Tingles: 3

-Paresthesias: 3, some burning in my right heel and left ball of foot

-Numbness: 2? burning makes it hard to notice other feelings (or lack of) in the usual area

-Vision: 2--it was okay this morning, then got blurry rather suddenly around noon. But not as bad as it was.

Motor:

-Gait: 1

-Sore muscles: 7, the backs of both legs, especially knees--spasticity

-Fine motor: 2

-Weak muscles: 4

Cognitive:

-Language processing: 1

-Memory: 0

-Attention: 1

-Confusion: 2, waxed and waned with sick feeling

General:

-Fatigue: 5

-Balance: 4, still walking like a drunk person at night

-Sleep: 2--got almost 8 hours but woke up several times to use the bathroom or get over a nightmare

-Bladder: 3 I guess

-Anxiety: 3

-Vertigo: 1, only happened a couple of times

My legs seriously HURT. Feels like cords along the backs of my knees are being pulled tight. Painfully tight. My quads are also tight, though not as bad as the tendons along the backs of my knees.

Look how much better my cognition is when I get enough sleep.

Wrap Up on Solu-Medrol

I don't want it again.

I believe that it helped:
-Sensation in my fingertips was partially numb and went back to normal
-Weird paresthesias like bug crawling went away

However, these were both mild problems. I believe that Solu-Medrol caused:
-Water retention
-Joint pain in my knees
-Stiff joints in my fingers, elbows, and knees
-Extremely reduced urine output for three days
-Possibly high blood sugar
-Acne on my chest, back, neck, face, and scalp
-Irritability
-Blurred vision
-Urinary tract infection
-Reduced cognitive function and increased fatigue due to the lack of sleep caused by frequent urination caused by either water retention or high blood sugar

It possibly caused:
-Mood swings (might have been just the grieving process)
-Burning feeling in my feet (or MS worsening?)

Yeah, so I'm thinking the cost/benefit ratio is poor.

Still Very Up and Down

I've been pretty sick today. Up and down, but honestly more down.

I have difficulty interpreting at church. Actually, I couldn't really do it. I left the chapel in tears and ended up lying on the couch, hanging out with two friends for the rest of the meeting. The problem was that I was physically too weak to sign, especially on my left side, and also that my brain wasn't working well. Sometimes I had trouble understanding what was being said. And it was difficult to interpret into the other language even when I did understand. It was so exhausting that I went downhill quickly.

My home teacher, who is my bishop, came over this afternoon. That was great. He always makes me feel better--he makes me feel loved. Except that I cry a lot when I talk with him! I guess because I know it's okay if I do. With some people, you know that you really can't cry no matter what, but my bishop isn't like that. He's like a father to me. Well, he is the father of our ward. ;)

And then my visiting teachers came over. This was their first visit, so we were getting to know each other. It was nice chatting with them. It was nice just having company. I've always been more of an introvert, but I'm changing. I'm finding that I need people now. Interacting with people makes me feel better. And not just talking about MS, either. Talking about my health (physical and emotional) is helpful, because I have a lot of processing to do. But talking about other stuff is also helpful, because it distracts me from my problems.

I'm wondering about my blood sugar. I feel better when I eat, but it depends what I eat. A nurse friend at church was saying how Solu-Medrol can raise your blood sugar--that would explain the vision changes, frequent urination, and burning feeling in my feet. I would think that my blood sugar would have leveled out by now, but maybe not. Of course, MS would also explain the burning feeling. I was reading Montel's book, and that's his primary sensory symptom.

Let's do numbers for today:

Sensory:

-Pins and needles: 2--feet

-Tingles: 1

-Paresthesias: 5--burning feeling in my left foot has been pretty bad sometimes

-Numbness: 1--right heel, and I think the patch is expanding

-Vision: 1--back to normal when I woke up! The trees on the drive to church were in HD--I could see the leaves!

Motor:

-Gait: 3--stiff, having difficulty with spastic left leg, also weakness

-Sore muscles: 6, left leg, mostly calf

-Fine motor: 4, having difficulty signing

-Weak muscles: 7--I have no endurance, having lots of trouble with my left arm and leg

Cognitive:

-Language processing: 3

-Memory: 1

-Attention: 3

-Confusion: 3

General:

-Fatigue: 7, but I didn't take a nap, hoping to sleep well tonight

-Balance: 4

-Sleep: 5--went to bed late because I was at the RS broadcast, woke up with nightmares a few times, hot, potty... just not sleeping great still

-Bladder: 4, still having trouble with weak stream, fully emptying

-Anxiety: 5, not sure why it has come up sometimes today--because feeling so poorly? Um, maybe because I don't know how I'll get through work tomorrow. And I need to train two people on different programs.

-Vertigo: 2--have had it off and on since Thursday

Audiology Problems

I have had a fluttery feeling/sound in my ears. Off and on for at least eight years. 

I've had intermittent tinnitus for the last year, more often recently. The tinnitus typically begins suddenly, without a ramp up. It does "ramp down," slowly disappearing rather than suddenly stopping. Occasionally it begins with almost a pop. Like a blown fuse. But it's never loud. 

I've had a few brief hearing drops that return to normal, which happened for the first time six months ago. 

Now that I've been diagnosed (less than a month ago), I wonder whether some or all of this is related to MS. I can see how it could be. 

The fluttery sound reminds me of the sound made when you shake an acetate sheet. Remember acetate? I would almost describe it as a "warping" sound, although warping what, I don't know. 

I have assumed that the fluttery sound was caused by spasms of a teeny little muscle in the middle ear called the tensor tympani. Its job is to protect your hearing if a loud noise happens--it makes your eardrum tense up so that the sounds are muffled a little before they hit your delicate inner ear at full strength. Although I understood that and could make a good guess as to what was causing the sound, I could not guess why on earth mine would spasm. MS could explain it--muscle tone and spasticity issues abound. 


The possibilities for hearing loss and MS seem obvious: demyelination of the hair cells of the cochlea is possible. The auditory nerve could experience inflammation or demyelination, as well.
Hearing loss and tinnitus... Well, I emailed an audiologist friend about it last week, who said exactly what I thought he would say: Yup, could be the MS. I'll ask him about the fluttery sound when I see him on Wednesday. It hadn't occurred to me that that could be related to MS until that person posted on the MS forum about it. So I'll get my hearing checked, talk about the tinnitus, make sure he checks my acoustic reflex, and ask if that could be related. It's been happening for so long, I don't know.


Here's what my colleague said about the tinnitus: 


as you are probably more aware of then I, with MS there's the issue with the mylin sheath on  your nerve which acts as insulation around the nerve keeping the impulses contained.  (I'm sure I am WAY oversimplifying it, please forgive me).   

With tinnitus, any impulses received to the brain by the auditory nerve that are outside of a normal stimulation pattern could be perceived as a ringing.   

So, yes, I could see how the tinnitus you are experiencing is within the possibility of the MS.    You should get your hearing tested, if you haven't already done so, to rule that out as well. 

Whew Better Today But Sick

Now when I say "better," I don't mean "good." But I'm out of my two-day nightmare. I got 8 hours of broken sleep--I got up to use the bathroom three or four times. I think that I would have slept more, but I was having abdominal pain that woke me up. That's probably just from the food I ate. I went to someone's house for dinner, and they served delicious but very heavy food. I've been on a light diet all week, so maybe I shocked my body.

I can't believe I stayed awake all day yesterday, after sleeping less than two hours!

I ended up peeing every 30-60 minutes most of the day. In the evening it became more like every two hours, which is where I still am. I can handle that. Maybe it's every 2-2.5 hours now. That's more manageable.

Someone on the MS message board said every time she does Solu-Medrol, she pees like crazy for about 24 hours. My dad said it happens to his patients. Why isn't Dr. Gabby aware of this?

It looks like I have a little urinary tract infection on top of everything. So I have antibiotics for that.

OK, so this morning I woke up feeling nauseated, with abdominal pan. And a sore throat. Then I felt better. Now suddenly I am feeling much worse! Nausea, dizziness, sore throat, and generally crappy. My tongue feels sticky, swollen, and dry. And the roof of my mouth. Well, I guess I've caught something.

In the MS department, the tendons of my knees have been getting tighter and tighter. It's kind of sore but mostly is just limiting my range of motion. The horrible burning in my feet yesterday has become a mild burning in just my left foot. The right one has impaired sensation along the lateral side but not burning--it's back to "normal."

My vision is better. Not back to normal, but at least halfway there. And it's better now than it was when I woke up. Maybe back to normal by the end of the day? I am very annoyed that water retention causing my blurred vision was not a possibility that occurred to my ophthalmologist. I told her that it began two days into my solumedrol course and directly asked if the two might be related. She said no.

I must have gotten a mosquito bite. I have the most insane welt on my forearm. It was a tiny bump ten minutes ago and is now almost an inch in diameter. Wow. I sprayed it with Benadryl spray.

OK, now I feel better again. Maybe the ibuprofen I took is kicking in.

Just got smacked by vertigo. Hate that. I was really hoping that was related to the Nuvigil. Guess not. Darn!

My mosquito bite grew a little more. It's as long as the first knuckle of my thumb and almost as wide.

OH, I want to blog a wee bit about audiology. Somebody on the MS message board had a question about it and had symptoms similar to mine. I wasn't sure mine were related to MS. Maybe. Will blog...

Wrap Up on Nuvigil

So I had the heart pounding thing once this morning (again, out of the blue), before 10:00. It happened frequently Thursday... sometimes during the night... once Friday morning... not at all Friday afternoon or later. The half life of Nuvigil is 12-15 hours, so it would have been at about 1/4 strength Friday morning.

Wow, that feeling was horrible. I am so glad it stopped. Even with the insanity of yesterday, and as much as I cried and worried and suffered, I did not have my heart pound. I am certain that it was the Nuvigil.

Honestly, that's a relief. I'm so glad that I wasn't developing a serious anxiety disorder.

Does My Theory Hold Water?

Solu-Medrol caused fluid retention, which caused blurred vision. Stopping Solu-Medrol caused the fluid to be released, which is causing me to urinate frequently, which is causing urinary tract irritation. Hence discomfort but not the insanity of UTI symptoms--it's been 10 years since I've had one, but you don't forget that.

I need to blog more, but I'm tired and HOPING and PLANNING to sleep.

If my theory is correct, my vision should improve--tomorrow or the next day? Fingers crossed.

My backup theory has to do with chemistry.

Eye Doctor Again

The ophthalmologist, Dr. Sindy, didn't fully check out everything like the first time, but she said my optic nerves look about the same. She dilated my eyes for that. I don't think she believed me that things are blurrier, and she didn't use the machine that estimates your prescription or do the "Which is better: 1 or 2?" I heard the staff saying that she needs to leave soon and needs to get through the patients quickly. If she didn't have time to do a thorough exam, I would have waited until Monday. It wasn't an emergency. Brother.

One thing she did that was new was a visual field test. The assistant ran the test. I had to press a button when I saw lights. I did a great job with my right eye, except one spot at the bottom. I had a larger spot at the bottom of my left eye (a spot means a blind spot). She said that she doesn't think it represents damage. I assume that means she thinks I just wasn't paying attention to that area.

I don't know if she's a good doctor.

One concern I had was that I was able to do the test fine with my left eye patched, but I had difficulty with my right eye patched. My vision kept going black, and then I'd realize that was the signal from my right eye (which was open behind the eye patch) taking over. It required concentration to focus on what I saw in my left eye.

I asked her about that, but she didn't give me any information. She just listened and said something noncommittal. I just wanted to know if that was normal. Maybe everyone has a dominant eye and that happens? If so, tell me. If not, tell me! Doctors are weird sometimes. What's it going to hurt to tell me if something is normal or not?

Feelings

I was just reading that people who express their feelings do better with serious illnesses. I think I've done some of that here, but I have loads of feelings that I can go ahead and express. And I have little filter at this point--too tired and sick.

I'm angry because my life is so hard right now.

I'm frustrated that I can't do most of the things I normally do. The things I can do right now are compromised--even if I can do them, I can't do them like usual.

I'm frustrated that I can't keep my thoughts in my head.

I'm scared that my doctor isn't doing what needs to be done for me to feel better.

I'm scared that I will keep getting sicker.

I'm scared that I don't really have MS, that I have something worse.

I'm lonely, because my friends and family don't really know what I am going through. Words can't fully convey it.

I'm frustrated/scared that I won't be able to do all the things I like to do, like skiing.

I'm embarrassed to be worried about something as trivial as skiing.

I'm embarrassed that my faith isn't stronger, because I haven't healed myself and sometimes I've really let this get to me.

I'm scared to try to heal myself, because I'm afraid I won't react well if I fail.

I'm frustrated that I can't sleep sometimes. I need sleep more than ever.

I'm scared that I am not or will not make the right choices for treatment.

I'm scared that if I keep track of my symptoms, bug the doctors, etc., I'm relying too much on the arm of flesh and not trusting God.

I'm scared that I will not be able to pay my bills.

I'm scared that people will think I'm a whiner or attention seeker.

I'm frustrated that as soon as I recognized and appreciated my strengths they were decimated. Alright, maybe not decimated. But certainly decreased.

I'm frustrated that I can't find the word I want. Decreased isn't exactly right.

I'm scared that I am crazy. Or somewhat crazy.

*****

I'm sure that many of these feelings and fears will seem silly tomorrow, or maybe I'll look at them and think that I really don't feel that way at all.

I paid bills while writing this. Ugh. I feel better to have that off my back.

Maybe expressing negative feelings does help. I think I feel better. I mean, I still have vertigo... my left leg is partially numb... my throat hurts... etc... But I feel calmer. Maybe. I should probably stop fighting my feelings and just let them happen.

OK, I'm going to try to sleep now. Now that it's getting to be morning. Should be an interesting day.

Sick?

I can't figure out what the heck is going on with me.

Beginning at about 9:30 last night, I needed to urinate about every 30 minutes. That went on until almost midnight. Then it was every hour. I have slept a grand total of two hours so far--and not even two hours straight!

Between getting up to use the bathroom (sometimes just as I'm about to fall asleep), feeling like my feet are burning (now it's both, and it's becoming painful), and my heart going through periods of pounding, it's just impossible to sleep right now.

The bladder issues are worrisome but mostly annoying. Am I not fully emptying my bladder? Is there something else going on that is making me produce more urine--suddenly tonight? Coming off the steroids?

How long do the side effects last for a five-day course of steroids?

Feet burning suuuuuuuuucks. Nothing else to say about that. Oh, yes there is: it makes me feel like I might be crazy.

I'm having sensation problems up the pinky side of my left hand. Or the muscle is contracting? It's hard to tell. Mild, whatever it is.

Now let's talk heart pounding: I could be wrong, but I am assuming this is psychological. I don't feel anxious about anything in particular, but maybe it's sort of a generalized anxiety. It seems to come and go without warning and without relationship to what I am thinking about. It isn't the hot feeling spreading across my chest that I identified (not happily) a few weeks ago as anxiety. It's just my heart beating out of my chest.

My vertigo continues. Getting worse? I don't want to say until it's light outside and I can compare apples with apples.

My throat hurts, which gives me hope. Maybe I'm just sick on top of having MS.

Trying to remember what to talk with Dr. Gabby about...
1. Vertigo continues (worsens?)
2. Vision--see an ophthalmologist? Is the person I saw before an optometrist or an ophthalmologist?
3. Bladder
4. Rash
5. Plan???

Ack, one more thing. Weird back pain. High on the right side of my back. Started yesterday afternoon.

Solu-Medrol Sucks and So Does Nuvigil

I think Solu-Medrol made my pins and needles in my right foot go away, and it improved the sensation in my fingertips, which were sort of numb before.

But it gave me stiff joints in my fingers, elbows, and knees. My knees hurt, especially the left. It also made me feel achy and sick. It made my minor bladder issues much worse--I don't think I could empty my bladder fully.

The burning feeling on the left ball of my foot has been there off and on today. Worse when I'm sitting?

My vision is still steadily declining. That has been since Sunday. I don't know whether the Solu-Medrol caused that or just didn't prevent it. Not happy either way.

Today I took Nuvigil and was VERY jittery. I'm shaky anyway, but this was just over the top. Hard to write, felt unsafe driving (probably was, honestly). No way I'm taking a full pill again. Maybe 1/4 or 1/2. Or maybe not, because...

I developed a rash on my chest and back this afternoon. I didn't feel it until recently. It feels warm now. But is this from the Nuvigil or the Solu-Medrol? I took Nuvigil once before and felt jittery but didn't get a rash.

And I've had vertigo off and on today. It gets better and worse. I wondered if it was the Nuvigil, but that didn't happen before. And I wondered if it could be the Solu-Medrol. I spoke with Dr. Gabby this afternoon, and she said it's the MS.

The jitteriness is wearing off, but not the vertigo. So maybe Dr. Gabby is right. I don't like the vertigo, because it makes me feel kind of sick to my stomach, and it makes it harder to focus (which is already difficult).

I hope my vision doesn't get any worse. I'm using a pair of night driving glasses, which are pretty minimal--I had them in case I needed to read street signs at night. So I'm using those all day, which is helping, I guess. I don't know. I'm not sure they're the right prescription for what my eyes are now.

So today kind of sucked.

Dr. Gabby said she'll get the nurse right on the ACTH order for me. I hope she's doing the right things for me. She said to call tomorrow morning at 10:00 and speak with her. I guess to tell her how I'm doing? I want to tell her about the rash, ask if I should see the eye doctor, and ask about DMDs.

My left calf cramped this evening.

And the front, right area of my tongue is numb.

And I've felt anxious sometimes today, which I think is understandable. Between the jitters, the vision, and the vertigo... plus the accumulation of lesser problems... It's just hard to be hopeful. I'm looking forward to seeing the shrink on Saturday, hoping she can help me.

Feeling Poorly

I feel crappy today. Again, like I have a flu or something. But I don't think I do. I don't know... I did have a sore throat for a while, but it went away. I feel generally achy, weird tingly. And dizzy.


My left knee was bothering me again. It hurt badly last night, and I couldn't bear weight on it. Better today but not normal. My knuckles aren't as stiff as they were yesterday, so that's good. I attribute these problems to the steroids.


Sensory:

-Pins and needles: 0

-Tingles: 4--related to sickly feeling?

-Paresthesias: 2--right heel feels like finger and thumb holding it; left ball of foot near big toe feels like burning--it hurts

-Numbness: 1

-Vision: 4--same as yesterday

Motor:

-Gait: 1--just slow and effortful, but not dragging my foot anymore (I think)

-Sore muscles: 4

-Fine motor: 4

-Weak muscles: 5--I get tired walking not even far

Cognitive:

-Language processing: 2

-Memory: 1

-Attention: 0

-Confusion: 2

General:

-Fatigue: 8--came home to take a nap, but I don't think I slept. Drifted a little. Mostly laid there for three hours.

-Balance: 4--affected by dizziness

-Sleep: 5--too warm in here last night, woke up several times, probably got 7 hours but broken up

-Bladder: 4

-Anxiety: 2

Yesterday's Numbers--Last Day of Solu-Medrol

Sensory:

-Pins and needles: 0

-Tingles: 3

-Paresthesias: 0

-Numbness: 1

-Vision: 4--couldn't read the TV guide channel, struggled to read [large] closed captions, couldn't see the needles on the tree on the deck (haven't seen those since Sunday)

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: 4

Cognitive:

-Language processing: 2

-Memory: 1

-Attention: 0

-Confusion: 2

General:

-Fatigue: 7

-Balance: 3--maybe Solu-Medrol makes it worse?

-Sleep: 3

-Bladder: 5--I'm hardly peeing much at all. I'm drinking the same amount as usual. Hard to get it going and keep it going.

-Anxiety: 2

I got some pretty significant joint pain in my left knee last night, and some (much less severe) in both of my elbows. I assume this is from the Solu-Medrol.

Still generally felt sickly all day: mild headache, mild body aches, tired (I am anyway), some stomach pain.

While I'm writing this... floaters in my vision are bugging me. Seems like they're worst in the morning?

Vision Still Struggling

I've worn my night driving glasses all day today. They don't bring my vision to what it was but are much better than nothing. My vision is worse today than yesterday. A little worse every day for the last three days. I keep hoping this will be as bad as it gets.

And I'm weak and dizzy today. Still kind of feel like I have a flu, still hoping it's just the steroids.

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.

Numbers

So I've now had three Solu-Medrol treatments. Two more to go. I think maybe they're helping, but it's hard to say. The most noticeable side effect has been a horrible, bitter taste that begins about half an hour into the treatment and continues for about 10 hours. Eating is rather unappealing--milk tastes spoiled, sweet things taste bitter. Even water tastes awful. I can eat salty foods, but I'm not really hungry for the rest of the day after a treatment. I seem to be in the mood for cereal afterward, but I can't eat it with the milk tasting rotten.

Another side effect has been feeling sort of like a have the flu. Achy, headachy, tired during the day but not sleeping well at night. Well, I did sleep fine Friday night but not last night. I had other things going on last night, too. I'm going to write a separate blog post about this stuff. I emailed my best friend about it, so I can just modify the email I sent her and post it here.

Let's do today's numbers. Keep in mind that I do not know how much is the Solu-Medrol and how much is the MS.

Sensory:

-Pins and needles: 2

-Tingles: 1

-Paresthesias: 1

-Numbness: 2

-Vision: 3--I had difficulty reading music today, and things have been blurrier than normal. Tiredness? The music things was weird and new. It was hard to tell which line the notes were on. 

Motor:

-Gait: 1--went to church today

-Sore muscles: 3, and I am taking ibuprofen for my period back pain

-Fine motor: 3

-Weak muscles: 4

Cognitive:

-Language processing: 3

-Memory: 2

-Attention: 1

-Confusion: 2

General:

-Fatigue: 7 this morning but I was up at 3:00 am--only got 5 hours of sleep. I took a nap in the afternoon, and my fatigue has been more like a 3 or 4

-Balance: 3--really bad when I don't have total light, like trying to walk in the middle of the night with only the light from the clock or nightlight

-Sleep: 7

-Bladder: 4--difficult to get anything out. I know I'm not eliminating as much as I'm taking in, and my urethra seems to be irritated. Hope I'm not getting a UTI.

-Anxiety: 1