Nervous and Excited for Tomorrow

I getting pretty nervous for my appointment tomorrow. Nervous and excited. One of my online friends encouraged me to temper my hope, given how often doctors are frankly horrible to us. Well, that made me more nervous than excited. I really hope it goes well. It takes so long to get appointments... and it is so discouraging when doctors say it is in my head or I am exaggerating... meanwhile, I am not getting better.


However, I felt generally crappy all morning and most of the afternoon. "Coming down with something" crappy. But then it mysteriously vanished around 4:00. Go figure--usually evenings are worse! This feeling was not my usual tiredness, etc. I was even a little nauseated on and off.


Sensory:

-Pins and needles: 3, any place that has even a little pressure. Butt, left upper back thigh, right upper calf, left lower calf

-Tingles: 1 right middle finger, left upper calf--seriously so random

-Paresthesias (burning): 2, left foot--oops, went too long between pills. And some in my left butt (sciatic nerve). :(

-Paresthesias (other): 0

-Numbness: 2, nothing new

-Vision: 1, floaters, focusing

-Nerve pain: 3, left leg as always

Motor:

-Gait: 3, slow and stiff. Going down stairs was tough.

-Sore muscles: 8 this morning for quads, 5 this afternoon and evening. Thank goodness, maybe it is getting better.

-Fine motor: 2

-Weak muscles: 5

-Spasticity: 7 for quads, 2 for gastrocs

Cognitive:

-Language processing: 1

-Memory: 2

-Attention: 0

-Confusion: 2

General:

-Fatigue: 8, then down to 5

-Balance: 3

-Sleep: 3, close to eight hours

-Bladder: 1

Grieving: See previous post, lol.

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.

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.

Faith or Denial?

I think I'm in a better place today. My back is still expressing its outrage at being assaulted on Friday, but it's getting better. I can sit supported for 15-20 minutes. I can walk a lot better.

I woke up many times last night but was able to go back to sleep, so I did get enough rest. Well, it seems like there's never enough. But close enough to enough. :)

I'm tired and weak today, but I think my brain is cooperating a little better than yesterday. I'm struggling with spelling sometimes. I was stymied this morning on the word biscuit. I kept typing buis... no that's not right... bius... buis.. finally had to sound out the beginning of the word. Good thing my mom taught me phonics!

I kind of had to laugh at a thought I couldn't get out this morning. I was telling my friend, "I emailed my parents to ask if there are any neurological or autoimmune disorders in our family. I heard from my dad, and he said in his family there are none. But um... my um..." A few seconds went by. I was going to talk about someone else... My friend finally prompted, "Your mom?"

Oh brother.

I've misunderstood my sister a few times. She said, "It fell over," and I thought she said, "I fell over." I was like, "Are you okay??" Yesterday she said something was off and I thought she said it was on. And I get VERY tired when she talks, because she talks so fast. I have to work to understand her. That kind of concentration is tiring.

And I'm making typing mistakes, which is unusual for me. Like lo instead of ol in a word. Looks like my brain is getting hit right now. The pins and needles have not been bad in my limbs.

I decided I was ready to watch the patient information DVD from one of the drug companies, called "Inside an MS Exacerbation." It was a two-minute animation showing the immune system damaging myelin and oligodendrocytes. Boo. My friend watched it with me, which was nice. I want the people around me to be interested in it and learn with me.

I'm trying to be careful about what I read online. I know that there is a lot of misinformation on the internet--when I look up any topic in my profession, 80% of the information is wrong or incomplete. I amin (I'm leaving that as an example of the typing mistakes I'm having to correct frequently) imagine it's the same for other professions. With MS being so poorly understood in general, I think it's safe to assume that reading online information will be useless.

I am similarly disinterested in online MS communities, because I wonder if you would see people with worse outcomes in those. Wouldn't people with good outcomes be out living their lives?

When my [young and clueless] home teachers came over Thursday night, one mentioned that there was a sister in the ward who has been living with MS for 30 years or something, that I should meet her and talk to her. I politely nodded but internally had a strong negative reaction. I do NOT want to meet her. I don't want to meet people that far along in it. I don't want to think that's what I'll become. And I don't even know what her situation is, and I don't want to know.

I re-read my patriarchal blessing, which I knew brought up health. Actually, it brings it up three times, and my blessing is not all that long. Reading that, I was thinking that I would be fine, but I also know that I've misread my blessing before. Sometimes we interpret things the way we want them to be. But I did feel better.

However... I know that denial is one step in the grief process. Some people get stuck in it for years. For example, the parent of one of my students accepted the disability when the child was six years old, despite having been diagnosed while still in the womb. The child did not receive some things that would have helped her during that time.

Faith and hope are good, and I'm holding onto them. But then I start to think, "You know, I'm fine. It might even just go away."Another reason it's hard for me to accept the diagnosis and move through the grief stages is that a couple of people around me have questioned it, thinking maybe I have Lyme. Every time other people question it, I do somewhat.

I wonder if I should talk to a shrink or something. One who is a member of the church would be nice.

So although I'm not sure I'm ready to meet people with MS, I do think I'm ready for patient education. I'm ready to talk about it.

Like I said, I didn't want to google multiple sclerosis. But I did want information, so I googled multiple sclerosis patient education. I found this website: http://www.nlm.nih.gov/medlineplus/tutorials/multiplesclerosis/htm/index.htm

My friend watched it with me. It was pretty basic information, which I knew from google searches over the past few months. But my friend hadn't been learning with me during that time, so it was probably good for her.

And I googled multiple sclerosis and hearing loss, because I did have drops in my hearing and tinnitus a couple of times... I want to say around March or April. Maybe May. It was short-lived (less than half an hour each time) and always went back to normal, but it was certainly weird. I found that about 6% of people will have hearing loss, but many more have hearing dysfunction due to lesions in the auditory pathways or cortex. Hm. We'll see what the evoked potentials testing shows. I'm really glad they're doing that. I'm not at all scared to lose my hearing, though. Losing my vision would be more devastating.

I haven't cried today. That's good, right?

Doctor = :)

I saw a new internist, Dr. Danny (not his real name). I loved him!

Remember how I was doing well yesterday morning? Unfortunately that didn't continue. Around 2:30 the exhaustion began, and I was ready for a nap. When I got to the appointment at 3:30, I was really dragging. I had to wait so long! By the time the doctor came in at 4:30, I could barely keep my eyes open.

I did perk up when I saw Dr. Danny, though, because I was so hopeful (had been praying) that he would listen and think. He did!

First, the nurse was so, so nice. Then Dr. Danny listened and asked questions. He did some simple neurological tests, and I did okay but not great.

I had trouble touching his finger when he moved it. When it was on my left side, it always seemed to be farther away than I thought it was.

I had trouble getting my balance to begin walking and to turn in another direction. I was fine once I was walking; I could walk on a line--but I did gymnastics for quite a few years. I have/had excellent balance--much better than other people.

I also had a little trouble keeping my balance when he had me close my eyes and hold up my arms. But I think I did pretty well with it. Just not as well as I would have before. Again, excellent balance.

He also asked me to run my left heel down my right shin and vice versa. I think I did that fine.

We talked. The nurse came back in and drew five tubes of blood. She tried and missed my median vein and then went for the basilic--ow. So now it looks like a vampire bit my arm.

I'm going to have an MRI of my entire spine tomorrow. I wonder how long that will take.

I have an appointment with a different neurologist, Dr. Sami, in a couple of weeks.

Dr. Danny threw out a few possible reasons for this: MS, Lyme, a virus. He said to make sure that I don't say, "Dr. Danny said I have MS!" Of course not. Actually, what I heard was, "Maybe it's a virus... A virus could just go away." Don't viruses go away? Sometimes? I understand that it might be MS, which is serious, but he did give me hope that this all might go away.