I had another MRI and saw the doc again today.
Short version: She officially diagnosed me with MS. We'll discuss medication at another appointment in October. Until then, I'll continue the Gabapentin to help with the tremor/weakness and sleep issues, and if anything severe crops up, we'll do another round of steroids.
Long version: The MRI went okay. I had a bad go of it with the IV this time. They blew out a vein in my right arm and gave me a decent sized knot that I know from experience will produce a horrible bruise (it's already a bit green). They also blew a vein in my left arm, and although it hurt more, there isn't a knot there. The third time was the charm and they successfully put the IV into my left hand. It hurt more to do it there, not only at insert, but also the whole time it was in and when they removed it. Oh well. At least it worked out. I generally have really good veins, so I was surprised at the trouble. So...anyway, I was pretty doped up on Valium, so I giggled it off while the next tech made Dracula and vampire jokes (oddly appropriate for me!) and then slept through the MRI.
And the results of said MRI? The 19mm lesion has decreased (Yay!) and the doc said she is fairly certain they can positively rule out a tumor. I didn't realize that possibility was still on the table, but I suppose I feel better knowing that. There are still 3-4 small lesions (like the size of a pen tip or so) and at least one of those is an old lesion. It appears that I have 3 of those on my right side. The last MRI showed I had 1 small one on the left, but she didn't point that one out today, so I don't know if it is still there. Basically this all means that she didn't see anything new and the steroids worked.
As far as the official diagnosis goes, I experienced a brand new symptom after treatment - a tremor in my left leg. Because of that, she was able to move forward with an official diagnosis instead of being forced to look at this as an isolated incident. I have multiple sclorosis. It is no longer a possibility, but a fact.
The good thing about receiving the official diagnosis is that all four medications are now available instead of just one. The reason that's a good thing is because 3 of the 4 have rather undesirable side effects that, at least in my case, I would probably need medication to counteract. The fourth medication, Copaxone, has the least amount of side effects and was the one I was hoping I'd be able to take. So, needless to say, that was my choice. It will be a daily shot given subcutaneously (sp?) which is just under the skin and won't need to go into the muscle. At my October appointment we will begin the paperwork involved with that and we'll schedule a time for a nurse to come to my house to show me and Tim how to administer the shots.
Because of the cost involved, I asked if we could wait until December to start treatment (that starts a new treatment fiscal year and will help reduce my out of pocket expenses). I don't know the exact cost yet, but rough estimates put this medication at $500 a month for my portion and about $2000 for the insurance company. The monthly could be less or it could be more - however, there is an out of pocket maximum capped at $1500 for me. The doc wasn't too thrilled with holding off, but she understands. I have a great doctor who is as sympathetic and understanding as she is skilled and good at her job (which is VERY), so I feel very fortunate.
Obviously, the sooner we start treatment the better. In the meantime, if I experience any symptoms that impair my daily life, we'll do another round of steroids to hold me over until December. And, I'll also play around with the Gabapentin to help with my sleeping issues, which at this point are my most problematic issue. The Gabapentin has greatly reduced the tremor in my right hand/arm and the weakness in my right leg. With the exception of one day, I've actually felt pretty good - as long as I don't push myself too far. I'm still learning my limits and since they can very from day to day, that makes things a bit frustrating. I'm never completely symptom free, but on some - most days, they are hardly noticeable.
I'm hoping that if I can get some good, quality sleep, things will really start to improve. It's hard to focus on stuff when I'm tired and stressed out all the time, and it's quite frustrating to toss and turn night after night when all I want to do is SLEEP. Usually, I'm so tired by the end of the week that I spend most of Sunday in bed. For some reason I am able to nap fairly well during the day and have, for the past several weekends, crashed for several hours at a time on Sunday afternoons.
As far as spirits go...things are still up and down. It's a scary prognosis to take, especially when I don't know what the future holds. I'm scared to death of daily shots, but others have assured me that it sounds worse than it is. I'm sure in time that I'll get used to it. I guess you never know what's in store for you...only God does, I suppose. I try not to focus too much on the depressing aspects of the "could bes" but sometimes that's hard. It's easy to say things like "maybe it won't be bad" or "they could come up with a cure" and stuff like that. But the things that usually pop into my head are the scarier what ifs, like winding up in a wheel chair or enduring debilitating pain or whatnot, or the fact that while this isn't a lethal disease, people with MS generally don't live as long as normal, healthier people. And really, losing the use of my legs doesn't bother me. I would much rather be in a wheel chair than lose my sight or my hearing. The artist in me would miss the beauty and color of life and my muse is music or listening the birds sing outside my window. With that said...I try really hard not to think about the fact that some people with MS go blind. That is just not something I will allow myself to worry about right now. Besides, even then, I'm sure Nerdgirl would let me touch all kinds of soft yarn to entertain me...yet another of life's little pleasures ;-).
Well, enough of that. I just try to focus on the here and now, talk to God, and enjoy the world around me. I've always really loved the Footprint poem or Psalm, and often ask Him to carry me when I can't carry myself. It's always made me feel better to know that besides all the people I have in my physical life, I have Him - not only with me, but right alongside me. I'm never alone, even when I'm by myself. And that isn't something that I'll ever forget.
Well, I didn't proof this one as well as I usually do, so please forgive any typos and whatnot. Thanks for checking up on me and for your prayers and support. God bless everyone. ^_^
P.S. Viva La Vida by Coldplay is an awesome song and the Jill DeCoy Association is pretty cool. See? I heart music. That is all.
Tuesday, August 12, 2008
Monday, August 11, 2008
What color girl are you?
You Are A Blue Girl |
 Relationships and feelings are the most important things to you. You are empathetic and accepting - and good at avoiding conflict. If someone close to you is in pain, it makes you hurt as well. You try to heal the ones you love with your kind and open heart. |
Monday, July 28, 2008
Status Update #2
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. ^_^
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. ^_^
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