MRI RESULTS
I don't think I ever posted results from my July MRI. They actually did a 3Tesla MRI this time which is much more powerful than a regular MRI. The images look like photographs of my brain, which is kind of crazy. I told my mom they looked like autopsy photos because they were so detailed....she didn't appreciate that much!! Haha.
Interestingly, it seems that my last MRI report may have been wrong. The radiologists compared my new scan with previous scans, including a 3Tesla scan from February, and the report was "no change" in either the lesions or the enhancement. My doctor says we will continue with regular MRIs to keep watching this. At this point we are approaching ten months of an enhancing tumefactive lesion, which is something you only read about in research papers, if at all.
NEW TREATMENT
Given that my lesion has failed to respond to every treatment we have tried....solumedrol, prednisone, plasma exchange (plasmapheresis), and Avonex, my neurologist has been more insistent than ever that we get me onto Tysabri. I have some pretty overwhelming cognitive symptoms that come and go, along with extreme fatigue, muscle weakness, numbness, nerve pain, nausea, head pressure, etc. My doc thinks there is a good chance that if we can get the lesion under control, I may also be able to get my symptoms under control. The hold up so far has been my insurance company. Tysabri is usually reserved for people who have had MS for a longer period of time and who have stopped responding to other MS treatments. Convincing them to approve such an expensive medication when I have been sick for less than a year has been a serious challenge. But I do have good news....it is finally approved!!! My first Tysabri infusion will be September 5th. I'm excited and hopeful, but also really nervous.
TYSABRI according to me.....
Tysabri is a pretty serious drug, in fact it is considered a black box drug because it has some risky side effects, including PML, a life-threatening, untreatable condition. You can't read anything about Tysabri without seeing this warning: "Since TYSABRI increases the risk of PML, a rare brain infection that usually causes death or severe disability, it's generally recommended for patients unable to tolerate or respond well to another therapy." Haha...that's pretty comforting when you keep seeing and hearing that over and over again! In some ways, even though I knew I needed this, I am not upset about the six months it took for my insurance to approve the medication. It has taken me that long to settle with the fact that we have tried everything else, and to accept that I really do need this treatment if I am going to get better...now we can only pray that it will work!
Tysabri is different than other MS treatments, because rather than delivering an interferon or other medication, it is actually delivering monoclonal antibodies. It does affect your immune system, though they say it is "immunomodulating" not "immunocompromising" like chemotherapy. One of the things it does is to modify the blood-brain barrier so that white blood cells and antibodies can no longer attack brain tissue. This is why we are thinking the Tysabri might help us get my lesions under control.
Because Tysabri is in the highest class of black box medications, the prescription has to go through the TOUCH prescribing program, which is a government regulated, and I had to be approved for the medication. It is nice because the Touch program makes sure that every facility giving the infusion is specially trained in giving Tysabri, and it collects regular updates from patients so that if there ever were to be a symptom or change that would indicate a problem, they would probably catch it sooner than later.
Tysabri is given once monthly, and I go to a doctors office to get the IV and infusion. They say it takes about an hour for the treatment to run, and then they always keep you for an hour to observe any side effects. I'm finishing off my valley fever treatment and then I'll be having my first infusion....I'll definitely write about it then!
I do have an update on the Valley Fever stuff. I had a chest CT which gave us another unexplainable puzzle piece (hooray!) It actually has nothing to do with Valley Fever. Or at least it doesn't look that way. Anyways. I'll write that update later because for now I need to sleep!
Mandy
Wednesday, August 15, 2012
Wednesday, July 25, 2012
Update: July 25 2012
Wow, so much time has passed since I've made an update that I'm not really sure were to begin. I guess not much has really happened, other than being constantly sick, but I'll sketch out the basics. There are a few things that are new, and one surprising bit of information.
Thanks to everyone who has emailed me to check on me in the absence of a blog update. I have also really enjoyed getting to know several of you who have emailed to tell me your own stories with Tumefactive MS. I have been shocked to realize just how rare this disease is, and how dramatically it has impacted those who have it. In almost every case I am told that the Tumefactive MS patient seems to be the only one in their area, that they have not heard of any other cases, and that their doctors seem to be playing a little bit of guess work. Sadly, I have not heard from one Tumefactive MS patient with a simple story. They are all stories of extreme suffering, stress, complicated diagnoses, and complex decisions about biopsies and medications. It honestly hurts my heart to hear these stories, but it also gives me a strong desire to help spread the word about this disease, and to find a way to connect these patients to one another so we can all figure this out together. I'm giving that some thought, so stay tuned, and definitely keep sharing.
One thing I have learned from talking to so many other Tumefactive MS patients is that most of them have had a good response to steroids. Guess that answers my question as to whether or not I am just "special" or if Tumefactive MS is "special" when it comes to being steroid resistant. Guess it's me. I'm the "special" one. Big surprise, right?? Haha. Sadly, I have met one other friend with a tumefactive lesion that has been enhancing for several months, like mine. Looks like they might go for the biopsy, though I need to check in and see what she has decided. Nothing about this is easy, that's for sure.
As for my recent health, it's been pretty up and down. Sadly the ups are short lived, but I am grateful that they come at all!! I was pretty dramatically sick through all of March, April, and most of May. Things started to even out in late may/june, and i even took a trip with my sister Mariah to NJ where we had some great days with two of my cousins, seeing some of the sites in NY and DC. It was actually a really great experience, it taught me alot about putting aside my physical discomforts and focusing on enjoying life. Sort of a chronic-illness bootcamp! Haha. It was a little disheartening spending whole days sleeping, starting every day late and ending early, but we did have alot of laughs, and I will always treasure the time I got to spend with my sister Mariah. She is the one and only reason I went. There were other things I would have liked to be considerations. But weighing out the physical cost and the potential consequences, she really was the only consideration. I love that girl so much. Being sick draws life into such a sharp perspective, and there is nothing more important to me that taking every opportunity to be with my family. When I am with my nieces and nephews, or my little sisters, I try to think of nothing but them. It honestly gives me strength in ways I can't explain. There is something about love that is more powerful than pain, more powerful that suffering, and that can sometimes put our minds and bodies into autopilot so that our hearts can access whatever energy we may have within us.
Sadly, but not surprisingly, I had a pretty rough patch once I got home from the trip. I immediately caught some sort of horrible flu. And unfortunately, I am stilllll sick. It's been almost five weeks now. I have been nauseous, achy, exhausted, can't think straight, can't sleep, losing weight for no reason. Some of those are nothing new, as I've been sick pretty constantly since this all started. But it's felt a little extreme, and the nausea and weight loss are new. I have asked my neurologist if it's normal with MS to feel sick this often, and he said that with normal MS, it's not. (Tumefactive MS is kind of a wild card) It can be normal to feel horrible all the time, and fatigued all the time, and to have regular bouts with being sick....but not this regularly. And that was all. He basically told me he wants me off the Avonex and onto the more extreme Tysabri immediately. And that was that. Apparently that's going to be our saving grace and fix everything...lol...I certainly hope that's true! He really has been insistent about it from the beginning. The insurance is the only reason we took a detour.
Fortunately for my health and my sanity, I have a PCP who has more time for the smaller details (which are HUGE details for me, since I'm the one feeling sick every day) and he ran a bunch of tests to see if there might be something else going on here. The first thing he found was an unexplained nodule in my lungs....that was a bit of a panic for me...and then about a week later my blood tests revealed a positive Valley Fever test. It would have been nice if those two discoveries had been found in reverse, or together, but at least the blood test explains the nodule. My doctor ordered meds to treat the Valley Fever, and he is sending me to a specialist next week for closer follow up. The goal is, of course, to keep this contained and shut it down as quickly as possible. Valley Fever is often very manageable, but it can also get completely out of control and turn into a chronic illness that causes significant damage. So here I am, "special" again. I have my own unique brand of MS, and I have Valley Fever. What next? Shall we go back to Rocky Mountain Spotted Fever and Typhus?
For any of you who knew me back in September 2011, when I first got sick....docs thought I had Valley Fever first. But then a highly sensitive titer test and my chest xray were negative, so we were back to not knowing what was making me sick. Everyone kept saying it still could be valley fever and that valley fever could last weeks and months. Then I was diagnosed with Rocky Mountain Spotted fever and Typhus, and then I got sicker, couldn't walk, landed in the hospital, found a massive lesion in my head, spinal tap showed markers for MS or Lymphoma, and the story goes on from there. Being that it's almost a year later, and its close to the end of summer, etc....this honestly feels a little too eerie, a little close to home to be diagnosed with Valley Fever now. I am a pretty rational person, but there is this tiny little, irrational part of me that is panicking, thinking the whole circus is about to be replayed. Obviously that isn't true, but it doesn't stop me from feeling that way at times! When my doctor called, I almost wanted to tell him there was no way I could have valley fever, and it must be a false positive. Oh wait. I did tell my doctor there was no way I could have valley fever, and asked if he was sure I should be taking a medication to treat something I couldn't have! He said that the blood test was definitely positive, and with the chest xray also being positive, this was out of his hands, and I needed to take the treatment and see the specialist. Shut down. Haha, at least I trust him, and the logical part of me knows he is making the right call. I am just tired of all these things I can't control. If they come back and tell me I have rocky mountain spotted fever, I'm out! I'm going to Europe, and I may or may not come back!
Haha, in other news, I recently had a new MRI done. I am still waiting on clearer results, but I will definitely post them when I get them!
Thanks to everyone for reading! I posted a picture from my trip below. I'll try to share a few more soon. I was having technical difficulties earlier, but this time I'll try to post them in the photos tab....I know, there isn't one now, but there will be!
Love and prayers to those of you going through hard things yourselves.
Mandy
Thanks to everyone who has emailed me to check on me in the absence of a blog update. I have also really enjoyed getting to know several of you who have emailed to tell me your own stories with Tumefactive MS. I have been shocked to realize just how rare this disease is, and how dramatically it has impacted those who have it. In almost every case I am told that the Tumefactive MS patient seems to be the only one in their area, that they have not heard of any other cases, and that their doctors seem to be playing a little bit of guess work. Sadly, I have not heard from one Tumefactive MS patient with a simple story. They are all stories of extreme suffering, stress, complicated diagnoses, and complex decisions about biopsies and medications. It honestly hurts my heart to hear these stories, but it also gives me a strong desire to help spread the word about this disease, and to find a way to connect these patients to one another so we can all figure this out together. I'm giving that some thought, so stay tuned, and definitely keep sharing.
One thing I have learned from talking to so many other Tumefactive MS patients is that most of them have had a good response to steroids. Guess that answers my question as to whether or not I am just "special" or if Tumefactive MS is "special" when it comes to being steroid resistant. Guess it's me. I'm the "special" one. Big surprise, right?? Haha. Sadly, I have met one other friend with a tumefactive lesion that has been enhancing for several months, like mine. Looks like they might go for the biopsy, though I need to check in and see what she has decided. Nothing about this is easy, that's for sure.
As for my recent health, it's been pretty up and down. Sadly the ups are short lived, but I am grateful that they come at all!! I was pretty dramatically sick through all of March, April, and most of May. Things started to even out in late may/june, and i even took a trip with my sister Mariah to NJ where we had some great days with two of my cousins, seeing some of the sites in NY and DC. It was actually a really great experience, it taught me alot about putting aside my physical discomforts and focusing on enjoying life. Sort of a chronic-illness bootcamp! Haha. It was a little disheartening spending whole days sleeping, starting every day late and ending early, but we did have alot of laughs, and I will always treasure the time I got to spend with my sister Mariah. She is the one and only reason I went. There were other things I would have liked to be considerations. But weighing out the physical cost and the potential consequences, she really was the only consideration. I love that girl so much. Being sick draws life into such a sharp perspective, and there is nothing more important to me that taking every opportunity to be with my family. When I am with my nieces and nephews, or my little sisters, I try to think of nothing but them. It honestly gives me strength in ways I can't explain. There is something about love that is more powerful than pain, more powerful that suffering, and that can sometimes put our minds and bodies into autopilot so that our hearts can access whatever energy we may have within us.
Sadly, but not surprisingly, I had a pretty rough patch once I got home from the trip. I immediately caught some sort of horrible flu. And unfortunately, I am stilllll sick. It's been almost five weeks now. I have been nauseous, achy, exhausted, can't think straight, can't sleep, losing weight for no reason. Some of those are nothing new, as I've been sick pretty constantly since this all started. But it's felt a little extreme, and the nausea and weight loss are new. I have asked my neurologist if it's normal with MS to feel sick this often, and he said that with normal MS, it's not. (Tumefactive MS is kind of a wild card) It can be normal to feel horrible all the time, and fatigued all the time, and to have regular bouts with being sick....but not this regularly. And that was all. He basically told me he wants me off the Avonex and onto the more extreme Tysabri immediately. And that was that. Apparently that's going to be our saving grace and fix everything...lol...I certainly hope that's true! He really has been insistent about it from the beginning. The insurance is the only reason we took a detour.
Fortunately for my health and my sanity, I have a PCP who has more time for the smaller details (which are HUGE details for me, since I'm the one feeling sick every day) and he ran a bunch of tests to see if there might be something else going on here. The first thing he found was an unexplained nodule in my lungs....that was a bit of a panic for me...and then about a week later my blood tests revealed a positive Valley Fever test. It would have been nice if those two discoveries had been found in reverse, or together, but at least the blood test explains the nodule. My doctor ordered meds to treat the Valley Fever, and he is sending me to a specialist next week for closer follow up. The goal is, of course, to keep this contained and shut it down as quickly as possible. Valley Fever is often very manageable, but it can also get completely out of control and turn into a chronic illness that causes significant damage. So here I am, "special" again. I have my own unique brand of MS, and I have Valley Fever. What next? Shall we go back to Rocky Mountain Spotted Fever and Typhus?
For any of you who knew me back in September 2011, when I first got sick....docs thought I had Valley Fever first. But then a highly sensitive titer test and my chest xray were negative, so we were back to not knowing what was making me sick. Everyone kept saying it still could be valley fever and that valley fever could last weeks and months. Then I was diagnosed with Rocky Mountain Spotted fever and Typhus, and then I got sicker, couldn't walk, landed in the hospital, found a massive lesion in my head, spinal tap showed markers for MS or Lymphoma, and the story goes on from there. Being that it's almost a year later, and its close to the end of summer, etc....this honestly feels a little too eerie, a little close to home to be diagnosed with Valley Fever now. I am a pretty rational person, but there is this tiny little, irrational part of me that is panicking, thinking the whole circus is about to be replayed. Obviously that isn't true, but it doesn't stop me from feeling that way at times! When my doctor called, I almost wanted to tell him there was no way I could have valley fever, and it must be a false positive. Oh wait. I did tell my doctor there was no way I could have valley fever, and asked if he was sure I should be taking a medication to treat something I couldn't have! He said that the blood test was definitely positive, and with the chest xray also being positive, this was out of his hands, and I needed to take the treatment and see the specialist. Shut down. Haha, at least I trust him, and the logical part of me knows he is making the right call. I am just tired of all these things I can't control. If they come back and tell me I have rocky mountain spotted fever, I'm out! I'm going to Europe, and I may or may not come back!
Haha, in other news, I recently had a new MRI done. I am still waiting on clearer results, but I will definitely post them when I get them!
Thanks to everyone for reading! I posted a picture from my trip below. I'll try to share a few more soon. I was having technical difficulties earlier, but this time I'll try to post them in the photos tab....I know, there isn't one now, but there will be!
Love and prayers to those of you going through hard things yourselves.
Mandy
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