Well, good news! For the first time, my MRI came back with good news! My lesions both show a decrease in enhancement! Hoooooray!! It's the first time we've gotten a positive report since all of this started. It's only a "slight decrease" but it means the mystery of my forever-enhancing lesion is hopefully going to be resolved! And I'll take that news!
This news also makes it more clear that this is Tumefactive MS. Having MS is not good news, but when the other options are lymphoma or a brain tumor, I guess it is a relief! I am so grateful for a doctor who held steady and didn't order a risky biopsy just because it was hard to wait this out.
As for what has caused the improvement, it's hard to say. Honestly, we would have expected the enhancement to improve months ago, so it could just be resolving on its own. But I did start Avonex a month ago, and I have been on a special MS diet for about a month. So who knows. But I guess I'm going to keep doing what I'm doing since things are moving in the right direction!
As for how I'm feeling, I'm definitely better than I was in March and April. That was a really rough time for me, and it's a relief to have access to my thoughts again and to be able to dedicate more energy to physical therapy and building up my endurance. I've been making progress overall, though I still have alot of rough days, especially with my Avonex, which makes me sick for two days out of each week. I still haven't been able to jump back into social activities and haven't been able to return to work yet. It's pretty disorienting being away from my "normal" life for so long. I am looking forward to the day when I feel predictably well. I know life will never be "normal" the way it was, but my perspective has changed alot, and hopefully I have learned a few things that will help me rebuild when the time comes.
I am constantly amazed at other people I meet who have MS. I had honestly never considered this disease before, and all that people go through. And yet, when I read stories or talk to people with MS, these are some of the strongest, most positive, dynamic people on the earth. It is a daily struggle that people have to learn to live with and work around, and somehow, most people with MS find a way to be really happy and proactive about it. I can honestly say I'm not there yet. I am still overwhelmed by how tired and weak I feel every day and how hard it is to think and process things like I used to. Some of my greatest talents feel completely inaccessible right now, and it's pretty disorienting. I am not bitter about it, but I have a really long way to go to become like these amazing people who have MS and live their lives so passionately. I guess I should be grateful for the opportunity. If MS has the ability to create such amazing and strong spirits, then I am lucky to join this group of incredible people and learn all that I can from them. I only hope I can rise to the occasion and actually turn this into a force for good in my life. Lots to learn...
Thanks to everyone for your love and prayers!
xoxo
Mandy
Thursday, May 31, 2012
Tuesday, May 1, 2012
Six Months Exactly
Exactly six months ago, I was admitted to a hospital for the first time in my life. Within a day, I had had my first MRI, had my first spinal tap, met my first neurologist, had nearly forty vials of blood drawn, and began two weeks of intensive diagnostic testing. I couldn't have imagined what would follow. And I honestly can't believe it's been six months.
For me, the hardest thing about all of this is continually waiting. Waiting for a treatment that works, waiting for a diagnosis that can be confirmed, and most of all, waiting to feel well again. Walking into my MRI last week and my doctor's appointment today, I knew that the hardest thing to bear would be no change, no news, no clues. And that is exactly what happened. We did come up with some new treatment ideas, but overall, I don't know anything more today than I did yesterday. Or last week. Or three months ago, really. I guess the great trial of my life right now is patience. I don't think I ever was very good with that one. Hopefully this will teach me a thing or two!
MRI RESULTS
My MRI was almost exactly the same. The primary lesion did appear slightly larger, but Dr. Okuda thinks that is due to positioning of my head in the MRI. So there is no new information. And my recent MS panel (spinal tap) was also inconclusive. I still test positive for oligoclonal bands, which occurs in only a handful of conditions, including MS and lymphoma, but the rest of the MS panel means nothing. It is all normal, which means it doesn't confirm anything and it doesn't rule anything out.
BIOPSY DISCUSSION
We did talk about the biopsy and Dr. Okuda reiterated how dangerous it would be. He said we may consider it again in a month, and we will definitely consider it if the lesion starts growing again. But he said even then, it will be a very difficult decision to make. He looked at me kind of sadly and said, "you are right handed, aren't you?" And then went on to explain how taking brain tissue out of the motor strip could severely weaken or paralyze muscles on my right side. He said we wouldn't touch the language center (which is good!) but that overall, where the majority of biopsies are unlikely to cause problems...this is not one of those cases. He said that we may get to the point where we need to take the chance, even despite the risks, but that it will be a really hard decision to make when the time comes.
WHAT ELSE COULD IT BE?
We asked Dr. Okuda what else this could be. He is very confident that there are really only three major suspects on the table. Tumefactive Multiple Sclerosis, Lymphoma, and a tumor of some kind. He said he still feels that Tumefactive MS is the most likely culprit, and that some of the things that make this seem like it's not MS could be directly related to the fact that it's Tumefactive MS, and not general MS. But he is very open about the fact that he may be wrong, and so we will continue to keep close to the MRIs, and if that lesion gives us any further reason to doubt, we will have to consider a biopsy to rule out lymphoma or a tumor.
THE PLAN
1. Continue monthly MRIs, watching to see if the lesion enhancement decreases (which would be good) or if the lesion grows (which would obviously be bad.)
2. Start on amantadine to hopefully help with my body/muscle weakness and extreme fatigue. This medication is often used in parkinson's patients, because it specifically targets neurological causes.
3. The Tysabri treatment is not approved by my insurance yet, so I am going to start on Avonex (a more standard MS treatment) in the meantime. That means I get to inject myself with Avonex shots (these are deep muscle shots) every week for a couple months or more. Everyone knows how I love needles! The nurses in my family are going to have to do this for me...if my life depended on it, I don't think I could give myself a shot like this!
4. We talked about the plan for treating acute relapses or new lesions in the future. I reacted so horribly to the steroids (twice!) that Dr. O says we will never use them on me again. He says that even though we didn't see any notable improvement with plasmapheresis before, that will probably be our first line of defense. Dr. Okuda says he has also considered the possibility of treating me with a chemotherapy, but said he goes back and forth about it. He said my case is a challenge because normally, MS patients and MS lesions respond very noticeably to steroids. He said that anybody else in my situation should be taking steroids every month, but with the steroids not working for me, it's almost like my lesions have gone untreated. I think this is something that Dr. O will continue to think about, but for now, the first line of defense in an acute situation will be plasmapheresis. (Hooray for shoving giant tubes in my jugular vein!)
That's all I can remember for now. I have to say I am disappointed that we don't have any further clues, and that the biopsy is too risky to look there for answers. But it definitely helps that Dr. Okuda seems to have a strong grasp of everything, and that he is confident in outlining a plan and backup plan. It really helps me to be able to focus more on recovering and getting well, knowing that he is so thoroughly watching things from a medical standpoint.
I want to sincerely thank everyone who has been praying for me, and calling on God to bless me in a variety of ways. Today was a rough day and it genuinely helped to know that there were so many people thinking about me and praying for me.
Spiritually, this has been an interesting learning process for me. This trial and the many unwanted changes in my life have been hard to bear. But surprisingly, I know more now than I ever have, that God has a plan for me. I know that even when I can't understand the reasons or the timing, that tests like this one will not last forever, and that through them, I will be taught to be a better person and a better follower of Jesus Christ. I know that he is more powerful than all of this. I know that he loves me. And even though a lack of answers feels like the worst possible answer, something about my current path feels right. Whether its actually the right path and treatment, or if its just the right timing of things moving forward, I don't know. But for now, I'll trust him and wait for whatever comes next.
love to all,
mandy
___________________________________
"I Will Praise You In This Storm" by Casting Crowns
For me, the hardest thing about all of this is continually waiting. Waiting for a treatment that works, waiting for a diagnosis that can be confirmed, and most of all, waiting to feel well again. Walking into my MRI last week and my doctor's appointment today, I knew that the hardest thing to bear would be no change, no news, no clues. And that is exactly what happened. We did come up with some new treatment ideas, but overall, I don't know anything more today than I did yesterday. Or last week. Or three months ago, really. I guess the great trial of my life right now is patience. I don't think I ever was very good with that one. Hopefully this will teach me a thing or two!
MRI RESULTS
My MRI was almost exactly the same. The primary lesion did appear slightly larger, but Dr. Okuda thinks that is due to positioning of my head in the MRI. So there is no new information. And my recent MS panel (spinal tap) was also inconclusive. I still test positive for oligoclonal bands, which occurs in only a handful of conditions, including MS and lymphoma, but the rest of the MS panel means nothing. It is all normal, which means it doesn't confirm anything and it doesn't rule anything out.
BIOPSY DISCUSSION
We did talk about the biopsy and Dr. Okuda reiterated how dangerous it would be. He said we may consider it again in a month, and we will definitely consider it if the lesion starts growing again. But he said even then, it will be a very difficult decision to make. He looked at me kind of sadly and said, "you are right handed, aren't you?" And then went on to explain how taking brain tissue out of the motor strip could severely weaken or paralyze muscles on my right side. He said we wouldn't touch the language center (which is good!) but that overall, where the majority of biopsies are unlikely to cause problems...this is not one of those cases. He said that we may get to the point where we need to take the chance, even despite the risks, but that it will be a really hard decision to make when the time comes.
WHAT ELSE COULD IT BE?
We asked Dr. Okuda what else this could be. He is very confident that there are really only three major suspects on the table. Tumefactive Multiple Sclerosis, Lymphoma, and a tumor of some kind. He said he still feels that Tumefactive MS is the most likely culprit, and that some of the things that make this seem like it's not MS could be directly related to the fact that it's Tumefactive MS, and not general MS. But he is very open about the fact that he may be wrong, and so we will continue to keep close to the MRIs, and if that lesion gives us any further reason to doubt, we will have to consider a biopsy to rule out lymphoma or a tumor.
THE PLAN
1. Continue monthly MRIs, watching to see if the lesion enhancement decreases (which would be good) or if the lesion grows (which would obviously be bad.)
2. Start on amantadine to hopefully help with my body/muscle weakness and extreme fatigue. This medication is often used in parkinson's patients, because it specifically targets neurological causes.
3. The Tysabri treatment is not approved by my insurance yet, so I am going to start on Avonex (a more standard MS treatment) in the meantime. That means I get to inject myself with Avonex shots (these are deep muscle shots) every week for a couple months or more. Everyone knows how I love needles! The nurses in my family are going to have to do this for me...if my life depended on it, I don't think I could give myself a shot like this!
4. We talked about the plan for treating acute relapses or new lesions in the future. I reacted so horribly to the steroids (twice!) that Dr. O says we will never use them on me again. He says that even though we didn't see any notable improvement with plasmapheresis before, that will probably be our first line of defense. Dr. Okuda says he has also considered the possibility of treating me with a chemotherapy, but said he goes back and forth about it. He said my case is a challenge because normally, MS patients and MS lesions respond very noticeably to steroids. He said that anybody else in my situation should be taking steroids every month, but with the steroids not working for me, it's almost like my lesions have gone untreated. I think this is something that Dr. O will continue to think about, but for now, the first line of defense in an acute situation will be plasmapheresis. (Hooray for shoving giant tubes in my jugular vein!)
That's all I can remember for now. I have to say I am disappointed that we don't have any further clues, and that the biopsy is too risky to look there for answers. But it definitely helps that Dr. Okuda seems to have a strong grasp of everything, and that he is confident in outlining a plan and backup plan. It really helps me to be able to focus more on recovering and getting well, knowing that he is so thoroughly watching things from a medical standpoint.
I want to sincerely thank everyone who has been praying for me, and calling on God to bless me in a variety of ways. Today was a rough day and it genuinely helped to know that there were so many people thinking about me and praying for me.
Spiritually, this has been an interesting learning process for me. This trial and the many unwanted changes in my life have been hard to bear. But surprisingly, I know more now than I ever have, that God has a plan for me. I know that even when I can't understand the reasons or the timing, that tests like this one will not last forever, and that through them, I will be taught to be a better person and a better follower of Jesus Christ. I know that he is more powerful than all of this. I know that he loves me. And even though a lack of answers feels like the worst possible answer, something about my current path feels right. Whether its actually the right path and treatment, or if its just the right timing of things moving forward, I don't know. But for now, I'll trust him and wait for whatever comes next.
love to all,
mandy
___________________________________
"I Will Praise You In This Storm" by Casting Crowns
Subscribe to:
Posts (Atom)