I saw the doctor today. The quick and simple is this: she can't officially diagnose me with MS yet and I have another MRI scheduled for mid-August. In the meantime, I'll start a medication to help with the tremor in my right arm and weakness in my right leg, and it should make me drowsy, which will help with my sleep issues.
As for the long version...my follow-up exam showed improvement in my balance and reflexes. The steroids improved my headaches, vertigo, dizziness, and fatigue, and I could continue to see a benefit from them for up to a year. My big issue right now is the stuff with my arm and leg, not feeling quite "right" or like myself (I have been making stupid mistakes lately, been forgetful, had trouble focusing/concentrating/gathering my thoughts, and even got into two super minor accidents - I tapped another car with the work vehicle and scratched Tim's truck on the mailbox O_O), and occasional other symptoms. The doctor said that I may not feel like myself for another month or so.
She believes that I have MS or will develop MS. I do have demyelination, but doctors are not permitted to diagnosis MS based on an isolated occurence. They must have more proof--basically something needs to get better with treatment or something new will need to appear. The next MRI may help with this. She expects to see the big spot of inflammation decreased in size and will be looking for additional leisions.
The result of the next MRI will also determine the course of treatment. As I already said, I am starting a medication to help with my right side. That was at my request and is not a treatment for MS. It will hopefully just alleviate my discomfort and pain. The MS medication will depend on what she sees in the MRI results, but all of the medications are given in shot form. If the MRI shows no change, she will have to treat this as an isolated incident until something new happens and there is only one medication approved for that. It is a daily shot. If there are changes, then that opens up options of other shots (although which one will also depend on my insurance coverage) - one is a weekly intermuscular and the others vary from daily to every other day. She gave me a handbook to read that describes each medication and pamphlet about MS. Once I start the shots, I'm pretty much on them for life.
She said that the big spot of inflammation cannot explain all of my symptoms and that there's got to be something else going on that they haven't seen. There may be leisons in my brain that didn't show up on the first MRI, new leisons may have developed since then, or I may have leisons in my spine. She hasn't ordered a spinal MRI yet. That may be an option if nothing has changed on the next brain MRI. She had also mentioned before that the inflammation could be aggravating my migraines and that some people have weakness/numbness on one half of their body with migraines. So there is always the possiblity that the problems I am currently having with my right side is more migraine related than MS related. This isn't something that we discussed today, so we'll just have to wait and see.
The only other thing is that I was looking into getting a cane to assist with my right leg issues. I discussed this with her and she advised against it right now, stating that my balance was still pretty good. If my leg gives out, I have a good shot at catching myself. On days when my leg is feeling weaker than others, I'll just have to reach out and hold onto something - which I do now, sometimes just touching the wall to steady myself or using a nearby object like furniture or a shelf at a store or something - but if it gets to the point where I really need a cane, she'll send me to physical therapy. At this point, if I fell with a cane, I could just get tangled up in it...which certainly wouldn't help things, right? ^_-
As far as activity goes, I can do whatever I feel like. If I'm feeling particularly tired, then I should take it easy. If I'm feeling like I want to get out and do stuff, then I should get out and do stuff. I don't have to prop my legs or anything like that. Right now I'm moving a bit slower than usual, but my energy levels are definately higher than they were a few months ago. My body will tell me what it needs.
So...we are still in a holding pattern, more or less. It looks like MS, but we can't call it that yet. I am still really thankful for everyone's thoughts and prayers. I am also very thankful for my doctor's one-day-at-a-time approach to all this, because everything just seems to get a little bit worse with each new bit of news. I mean, first came the initial possibility of MS, which led to some labwork. Those results led to the spinal tap and more bloodwork. And now I'm here...another MRI and shots for the rest of my life. I can't imagine hearing all that back in that very first appointment...it would have been so overwhelming. Taking it one step at a time, in small batches, has really helped both of us cope with what we're being told. As I said in a previous post, this has been life altering, but as my doctor pointed out, things will get better. These episodes can take months to get past, but they do pass. I will start to feel better; it is just going to take time. I'll do another offical status update after my MRI and appt on August 12. Until then, thanks again for everyone's support, thoughts, and prayers. They are greatly appreciated. Now...I want a cookie, so...I'm going to go get a cookie. ^_^
Monday, July 28, 2008
Thursday, July 24, 2008
One day at a time
This isn't really an update per se, since I have nothing new to report. I'm just feeling the need to remind myself that "one day at a time" means just that and seeing this in physical form might help. I'm going to feel okay or even great on some days, but maybe not so well on others. I have to get used to that. I wondered briefly yesterday if I was allowed to feel sorry for myself--I mean everyone has problems and other people are much worse off than I am. But then I cut myself some slack...this is still new to me and it is life altering, so I think I am allowed to freak out every now and then. If I'm still freaking out in a year or so, after this has all become old news, maybe I'll start to worry. ^_-
My ecstatic high at feeling "normal" came to a pretty grinding stop yesterday, which was the last day of the oral steroids. Amid a plethora of migraine symptoms, my right leg bothered me all day. What started as an achy numbness in my upper thigh eventually spread to my knee and into my ankle. By the end of the workday, my ankle felt like it wanted to fold under my foot with each step. Shortly thereafter, my right leg disappeared on me in midstep...and yes, I fell. Luckily enough (or not, since I was in public), I was grocery shopping and had a hold of the cart to catch myself. At first, all I could do was laugh and then I wanted to cry.
What does this mean? Will I have to start more treatment? What happens if I fall when...this? What happens if...that? What about work? Should I have gone home to rest? Oh brother. Anyone who knows me knows that my brain asks endless questions trying to plan for every possible outcome. Unfortunately, I can't formulate those answers. I can't even ask all the questions. I have no choice but to take it one day at a time.
One bad day doesn't mean another will follow. One good day doesn't guarantee that the next will be even better. Perhaps this is a lesson I'll need to learn over and over again. Perhaps this is where my eternal optimism will bite me hard. But no matter how hard it bites me, there's no doubt in my mind that I'll ever give in completely to pessimism.
So, what is the point of all this rambling? Basically, that I need to remember that even though my life has changed, I don't know by how much. I can't really plan for the future any better than anyone else can. All I can do is take it, again, one day at a time, and keep hoping and praying for the best. I know God is watching over me. I know He is with me through this. I know that if (when) I fall, He'll be there to catch me (even in the form of a grocery cart -- maybe He's one of the Wonder Twins). And I know that when I freak out and fall to pieces, He's there to put me back together. He is here today and He'll be there tomorrow, even though I'm taking it one day at a time.
My ecstatic high at feeling "normal" came to a pretty grinding stop yesterday, which was the last day of the oral steroids. Amid a plethora of migraine symptoms, my right leg bothered me all day. What started as an achy numbness in my upper thigh eventually spread to my knee and into my ankle. By the end of the workday, my ankle felt like it wanted to fold under my foot with each step. Shortly thereafter, my right leg disappeared on me in midstep...and yes, I fell. Luckily enough (or not, since I was in public), I was grocery shopping and had a hold of the cart to catch myself. At first, all I could do was laugh and then I wanted to cry.
What does this mean? Will I have to start more treatment? What happens if I fall when...this? What happens if...that? What about work? Should I have gone home to rest? Oh brother. Anyone who knows me knows that my brain asks endless questions trying to plan for every possible outcome. Unfortunately, I can't formulate those answers. I can't even ask all the questions. I have no choice but to take it one day at a time.
One bad day doesn't mean another will follow. One good day doesn't guarantee that the next will be even better. Perhaps this is a lesson I'll need to learn over and over again. Perhaps this is where my eternal optimism will bite me hard. But no matter how hard it bites me, there's no doubt in my mind that I'll ever give in completely to pessimism.
So, what is the point of all this rambling? Basically, that I need to remember that even though my life has changed, I don't know by how much. I can't really plan for the future any better than anyone else can. All I can do is take it, again, one day at a time, and keep hoping and praying for the best. I know God is watching over me. I know He is with me through this. I know that if (when) I fall, He'll be there to catch me (even in the form of a grocery cart -- maybe He's one of the Wonder Twins). And I know that when I freak out and fall to pieces, He's there to put me back together. He is here today and He'll be there tomorrow, even though I'm taking it one day at a time.
Sunday, July 20, 2008
Photo meme
Nerdgirl has an interesting photo mosaic on her blog and I decided to play along. Here are my results:
1.Headstones-Katzie Nation Cemetery Maple Ridge BC, 2. Sjors inherited Meffi's love for Fried Chicken, 3. MSHS-2007 Auburn Marching Band Competition, 4. A Change of Seasons Part VII: The Crimson Sunset, 5. Vampire hunter d, 6. orange_juice, 7. Sakura_at_TOKYO_#2, 8. Fresh Cherry Pie, 9. the author looms above his page (365-195), 10. God, 11. Unique - Always, 12. Sakuya Konohana Kan (Tsurumi Ryokuchi Park)
And here is how you can play along at home (ripped from Nerdgirl's page ^_^)...
a. Type your answer to each of the questions below into Flickr Search.
b. Using only the first page, pick an image.
c. Copy and paste each of the URLs for the images into fd’s mosaic maker.
1.Headstones-Katzie Nation Cemetery Maple Ridge BC, 2. Sjors inherited Meffi's love for Fried Chicken, 3. MSHS-2007 Auburn Marching Band Competition, 4. A Change of Seasons Part VII: The Crimson Sunset, 5. Vampire hunter d, 6. orange_juice, 7. Sakura_at_TOKYO_#2, 8. Fresh Cherry Pie, 9. the author looms above his page (365-195), 10. God, 11. Unique - Always, 12. Sakuya Konohana Kan (Tsurumi Ryokuchi Park)
And here is how you can play along at home (ripped from Nerdgirl's page ^_^)...
a. Type your answer to each of the questions below into Flickr Search.
b. Using only the first page, pick an image.
c. Copy and paste each of the URLs for the images into fd’s mosaic maker.
1. What is your first name?
2. What is your favorite food?
3. What high school did you go to?
4. What is your favorite color?
5. Who is your celebrity crush?
6. Favorite drink?
7. Dream vacation?
8. Favorite dessert?
9. What do you want to be when you grow up?
10. What do you love most in life?
11. One word to describe you.
12. Your Flickr name.
Saturday, July 19, 2008
Nothing Much...
For the last few days, I've felt more normal than I have in months. Now, of course, my loving spouse was quick to pointout that I've never actually been normal...but that is neither here nor there.
What really matters is that the steroids seem to be having an effect. I feel better. And boy have I had a ton of energy the last few days. In fact, I might finish painting my house tomorrow.
I haven't slept much this week. Last night I was up at 3:30 and the night before that at 4:30. It doesn't help to wake up with a cat sitting on your head, either. So today I received an Rx for sleeping pills that I can use 2 - 3 times per week while I finish this course of treatment.
Nearly three hours ago, I toyed with taking one, only to ultimately decide that I was tired enough to sleep on my own. Well...now it's going on 1:30 a.m. There's always tomorrow night...except that it is cartoon night and I can't sleep through those. ^_^
Good night!
And PS - Although I discovered the albulm years ago, I recently stumbled upon Delirium's "Poem" among my MP3 collection (not SAM, but PAM Ms. NerdGirl) and have fallen in love with it all over again. Not sure where that fits in, but thought I'd share anyway. ^__^
Now I'm unhinging myself from my laptop and turning off the lights. Night!
What really matters is that the steroids seem to be having an effect. I feel better. And boy have I had a ton of energy the last few days. In fact, I might finish painting my house tomorrow.
I haven't slept much this week. Last night I was up at 3:30 and the night before that at 4:30. It doesn't help to wake up with a cat sitting on your head, either. So today I received an Rx for sleeping pills that I can use 2 - 3 times per week while I finish this course of treatment.
Nearly three hours ago, I toyed with taking one, only to ultimately decide that I was tired enough to sleep on my own. Well...now it's going on 1:30 a.m. There's always tomorrow night...except that it is cartoon night and I can't sleep through those. ^_^
Good night!
And PS - Although I discovered the albulm years ago, I recently stumbled upon Delirium's "Poem" among my MP3 collection (not SAM, but PAM Ms. NerdGirl) and have fallen in love with it all over again. Not sure where that fits in, but thought I'd share anyway. ^__^
Now I'm unhinging myself from my laptop and turning off the lights. Night!
Friday, July 11, 2008
Another Quick Thought
I was just thinking about my banner question: Do you really want to step inside my head?
Better really think about that one, cuz there's lots of stuff going on in there! ^_^ If anything good has come from all my MRIs and stuff over the last few years, it's that I know I have a brain and then some! (At least I have something up on the Wizard of Oz's Scarecrow. And btw, that movie gives me nightmares...and no, I can't explain why.)
That is all.
Better really think about that one, cuz there's lots of stuff going on in there! ^_^ If anything good has come from all my MRIs and stuff over the last few years, it's that I know I have a brain and then some! (At least I have something up on the Wizard of Oz's Scarecrow. And btw, that movie gives me nightmares...and no, I can't explain why.)
That is all.
Status Update
Today I am feeling pretty tired and worn out. I finished up my last IV steroid treatment yesterday and started the oral steroids this morning. I will continue on those at full dose for 11 days and then ween off for the two following days. The first IV treatment left me extremely energized and even after taking a sleeping pill, I was wide awake at 3:30 a.m. I've been more tired since then, because my sleeping pills were doubled in dose for the final two treatments (there were three in all). I am also taking an OTC medication to help protect my stomach since the steroids can cause ulcers and other problems. So far I am taking everything well.
I was able to learn a little more about the initial findings of my spinal tap. As you may know, the doctor found demyelination, which, according to http://www.msif.org/en/about_ms/demyelination.html, means:
"Demyelination is the term used for a loss of myelin, a substance in the white matter that insulates nerve endings. Myelin helps the nerves receive and interpret messages from the brain at maximum speed. When nerve endings lose this substance they can not function properly, leading to patches of scarring, or ‘sclerosis’, occurring where nerve endings have lost myelin. It is these areas of scarring that give multiple sclerosis its name.Demyelination is the root cause of the symptoms that people with MS experience. When it occurs the speed at which messages pass along the nerves is slower than normal. Even when the patches of scarring caused by demyelination have healed and re-myelination has occurred, the response time of the nerve endings tends to remain slower."
I am still awaiting the finished results of the spinal tap and blood tests, and will meet again with my doctor towards the end of the month. I don't know where we go from here, but I will probably have two more MRIs done in the next 6 months or so to check on the inflammation/leisons.
As far as current symptoms go, I am generally fatigued, have occasional leg weakness (I may fall down or need to catch myself for support), frequent headaches and migrains with aggravated neurological effects due to the inflammation in my brain, and an occasional tremor in my right hand and arm. I have many bouts of dizziness and vertigo, and sometimes am even more uncoordinated than usual, meaning clumsy accidents where I walk into walls and stuff. Yesterday I walked into a wall and messed up my glasses because I hit the bridge of my nose...so, while I am usually clumsy, even this is extraordinarily out of my normal spectrum.
I don't know for sure that my appetite issues are related at this point, but I have lost 35 pounds so far, and even though the doctor thought the steroids may boost my appetite, it's as still as non-existent as ever, which means that I am still losing weight.
I'd like to thank everyone for their thoughts and prayers. It has been an extreme boost to know that so many are keeping me uplifted.
I was able to learn a little more about the initial findings of my spinal tap. As you may know, the doctor found demyelination, which, according to http://www.msif.org/en/about_ms/demyelination.html, means:
"Demyelination is the term used for a loss of myelin, a substance in the white matter that insulates nerve endings. Myelin helps the nerves receive and interpret messages from the brain at maximum speed. When nerve endings lose this substance they can not function properly, leading to patches of scarring, or ‘sclerosis’, occurring where nerve endings have lost myelin. It is these areas of scarring that give multiple sclerosis its name.Demyelination is the root cause of the symptoms that people with MS experience. When it occurs the speed at which messages pass along the nerves is slower than normal. Even when the patches of scarring caused by demyelination have healed and re-myelination has occurred, the response time of the nerve endings tends to remain slower."
I am still awaiting the finished results of the spinal tap and blood tests, and will meet again with my doctor towards the end of the month. I don't know where we go from here, but I will probably have two more MRIs done in the next 6 months or so to check on the inflammation/leisons.
As far as current symptoms go, I am generally fatigued, have occasional leg weakness (I may fall down or need to catch myself for support), frequent headaches and migrains with aggravated neurological effects due to the inflammation in my brain, and an occasional tremor in my right hand and arm. I have many bouts of dizziness and vertigo, and sometimes am even more uncoordinated than usual, meaning clumsy accidents where I walk into walls and stuff. Yesterday I walked into a wall and messed up my glasses because I hit the bridge of my nose...so, while I am usually clumsy, even this is extraordinarily out of my normal spectrum.
I don't know for sure that my appetite issues are related at this point, but I have lost 35 pounds so far, and even though the doctor thought the steroids may boost my appetite, it's as still as non-existent as ever, which means that I am still losing weight.
I'd like to thank everyone for their thoughts and prayers. It has been an extreme boost to know that so many are keeping me uplifted.
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