Tuesday, October 9, 2012
Monday, October 8, 2012
Reaction to Tysabri
I had a reaction to my Tysabri infusion today. Nooooooo!!! I'm so frustrated, I need this medication! Not sure what happened, I just suddenly couldn't breathe or think or talk or see straight. All the muscles in my hands and arms were clenching up. It was pretty awful. Fortunately, I was getting my infusion at Mercy Gilbert, so they took me straight to the ER. I was there for almost five hours, they gave me Benadryl and Baclofen, did a CT to check for a brain bleed, and after awhile things started to calm down. Barrows was at the ready to have me transferred and admitted, but I really did start improving after several hours, and I HATE sleeping over at the hospital. I couldn't be more relieved to be back home now.
Still feeling like I got hit by a truck, but the most frustrating thing is not knowing if I'll be able to continue with this medication. I really need it, and I'm afraid of next steps without it. I'm really hoping my doc will let me try this at least once more. Blah.
Wednesday, September 19, 2012
85 Skin Pricks, 17 SHOTS, an IV, and an MRI
Yesterday I had 85 Skin Pricks, 17 Shots, an IV, and an MRI! And today I have a blood draw for some additional testing. We are trying to investigate my crazy head pressure, so my doc sent me to an allergist to see if that could be contributing. The 85 skin pricks in my back turned up nothing, so they moved onto shots! They literally gave me 17 shots in the arms. The nurse hit me with a syringe, threw it in the sharps box, then pulled out the next syringe. I honestly cried last year when I got my one pathetic flu shot! I was suuuuch a baby! I'm not gonna lie and say I'm not still a baby about needles....I definitely am! But I think seventeen shots seemed so surreal that I didn't know how to react. The nurse felt so bad, she promised I'd get a really good "prize" for being so good! Haha! She brought me TWO stickers, a lollipop, and a pack of silly bands! It was pretty funny.
Fortunately or unfortunately (I haven't decided which!) the shots also turned up no allergies. That's a good thing, but it was our safest guess on the head pressure...so I guess we are still unsure what is causing that. I know it probably seems crazy that I have a big lesion in my head and we are wondering what in the world could be causing head pressure....haha. But the normal meds to help this haven't been working, so the docs want to rule more things out.
I did have another MRI yesterday (which always includes a contrast IV). I don't have results, but I looked at the disk myself, and there don't seem to be any major changes for the better or the worse. If the official report is worth mentioning, I'll definitely post about it. But I'm guessing its all the same. The important MRI will be in November, when we'll first be able to tell if the Tysabri is working.
Wednesday, September 5, 2012
Tysabri!
Tysabri appointment today! Everything went well with the infusion. It
took forever because after everything is done, they make you stay an
extra hour to be "observed." But no major reactions, so for now I'm
cleared to keep taking this! I'll have these infusions once a month, and
it will take at least eight weeks to know if it's improving my brain
lesion. Fingers crossed and saying prayers!
Monday, September 3, 2012
Barrow's Appointment: August 28th
I'm feeling a little heavy hearted this week. I have a friend in the hospital, a friend of a friend whose baby just drowned, a friend who just miscarried a baby, a close and important political campaign that was lost, and a close friend who is going through an excruciating breakup. It's times like this that really put life into sharp focus, and remind me of what's most important. I can't say how much I love the people in my life. My family, my friends...I don't know what I'd do without them. I wish there was more I could do to help with hard times like these. One thing I do know about life is that it's not easy. Big trials happen, and there is no easy way to get through them. But I also know that God is never far, and we are never truly alone, whatever we may be going through.
This week has also been tough because my family moved to a new house in a new town. For now I'm living with them, so that means a change for me too. It's been physically and emotionally exhausting on us all. Fortunately, the move brings us closer to my married siblings, and closer to my mom's work, so ultimately it will be a good thing.
This week's appointment at Barrow Neurology was important, and it was great to talk strategy with my neurologist. That always puts my mind to rest because I know there is a plan, even if there aren't answers. My neurologist said he is constantly "re-inventing" my case because there is nothing about it that has been predictable, nothing that fits in a textbook, and he wants to make sure we are not missing anything important, or working with the wrong diagnosis.
UNEXPLAINED CT SCAN
Because of the lung nodule that showed up on a recent X-ray, my pulmonologist ordered a CT scan of my chest to get a closer look. The CT scan showed "multiple spots" (greater than ten) on my lungs. My antibody test for valley fever came back negative, so my pulmonologist and my neurologist are confident these lung spots are not caused by valley fever. They both said there is a .01% chance that i could have valley fever that doesn't produce antibodies, but with odds like that, we are pulling it off the table. So the lung spots have no explanation. I will have another chest CT scan in three months to check for any changes. I asked my pulmonologist if he thought there was any way this could be connected to my bigger medical case, and he said that was a good question to ask my neurologist. So I did. The neurologist says the only thing he can think of that would connect my lung spots and brain lesion would be neuro sarcoidosis. But he said it isn't acting like that, so he highly doubts it is. His conclusion about the lung spots is that he has no explanation for them. He did say its possible they are granulomas from something I inhaled in the past, which would mean they are currently harmless. The follow up CT will hopefully make that more clear.
ANOTHER RANDOM DETAIL...
Another thing we have no explanation for is weight loss. In a matter of about six weeks, I lost fourteen pounds despite eating and resting regularly. Valley Fever would have explained this weight loss, but now we are saying I never had valley fever. My neurologist admits that this is another thing he has no explanation for. As frustrating as that sounds, I actually prefer his honesty.
BRAIN LESION DISCUSSION
As for the brain lesion, my doctor says there have not been any significant changes. It is still the same size, and still enhancing as strongly as it was when we first found it. What we thought was a slight improvement before, actually wasn't significant. The most important thing right now is still addressing and controlling this lesion. My neurologist said there are plenty of doctors, including the docs at St. Joe's, who would want to do a biopsy at this point. But we talked (again) through all the reasons we should wait. He said it doesn't look like neuro sarcoidosis because steroids would have dramatically improved the lesion, it doesn't look like lymphoma because steroids would have dramatically improved the lesion, and it doesn't look like a brain tumor because there is a second lesion (the chances of having two tumors at the same time are very small) and because neither of the two lesions have grown in the past few months. Overall, it's pretty clear that this isn't acting like any of those things. But then I asked the obvious question that we have discussed a million times. I said, "how likely is it that a tumefactive MS lesion would also fail to improve with steroids, not to mention plasma exchange?" He said that's why he has to keep reinventing this diagnosis and strategy. Because steroids should have improved an MS lesion too, and they haven't.
DIAGNOSIS DISCUSSION
Dr. Okuda (my neurologist) said he is still confident that this is Tumefactive MS. I asked if it could be another form of demyelinating disease, or another sub-type of MS. He made a joke about how he has given this question "a little bit of thought" in the past. Haha. I do know that he thinks about my case often and that he has considered it from every angle. He said that within the MS family and other demyelinating diseases, it is the size of my lesion that gives it away. He said this large size is the calling card of tumefactive MS. If it's a demyelination, or MS, he is confident it's Tumefactive MS.
STRATEGY DISCUSSION
I asked Dr. Okuda what the research says about lesions that enhance as long as mine. To his credit, he told me the truth. He said there isn't any research about lesions that enhance this long. He said that while investigating Tumefactive MS, he has found doctors who have seen this before, but it seems to be extremely unusual. He said that this scarcity isn't necessarily a fair read though, because many doctors treat these lesions with chemotherapy, which would stop the lesions from enhancing by shutting down the immune system and stopping the body from attacking it's own brain tissue. He said chemotherapy is something he is trying to protect me from. For now we are going to move forward with the Tysabri and pray that it works. Dr. Okuda is actually really hopeful, even confident that it will dramatically improve my brain lesion and my quality of life. I was glad to have this discussion because Tysabri seems so extreme and risky to me. But knowing that our next step could be chemotherapy makes me very grateful that we have something else we can try. I am also very grateful for a doctor who is doing everything he can to protect me in this uncertain battle. I honestly wouldn't trust these decisions to anyone but him. I think there are few doctors out there who could resist doing a biopsy or jumping to chemotherapy after so much time has passed without resolution. We do know there is a chance that we are completely wrong about the diagnosis, but we have enough reasons to be confident in our plan, that we are comfortable taking these precautions.
My first Tysabri treatment is this week on Wednesday. Dr. Okuda says we should know if it's working within about eight weeks. We'll continue with regular MRIs and hope that things start to improve! My next MRI is actually in a couple weeks, but that is just to keep an eye on things like usual. My November MRI should tell us if the Tysabri is working. Fingers crossed and praying that it does!
Thanks to everyone for reading my blog! I appreciate the emails and messages I get from several of you. It really does mean alot. I apologize for any that I may not have responded to. When I have a rough week, a million details get lost. But please know that I do read every message and it means alot! To those of you with Tumefactive MS, keep fighting the fight! It's often very confusing and overwhelming, but every day of life is worth the struggle. Message me when you need to talk. mandyclive@gmail.com
All my best,
Mandy
This week has also been tough because my family moved to a new house in a new town. For now I'm living with them, so that means a change for me too. It's been physically and emotionally exhausting on us all. Fortunately, the move brings us closer to my married siblings, and closer to my mom's work, so ultimately it will be a good thing.
This week's appointment at Barrow Neurology was important, and it was great to talk strategy with my neurologist. That always puts my mind to rest because I know there is a plan, even if there aren't answers. My neurologist said he is constantly "re-inventing" my case because there is nothing about it that has been predictable, nothing that fits in a textbook, and he wants to make sure we are not missing anything important, or working with the wrong diagnosis.
UNEXPLAINED CT SCAN
Because of the lung nodule that showed up on a recent X-ray, my pulmonologist ordered a CT scan of my chest to get a closer look. The CT scan showed "multiple spots" (greater than ten) on my lungs. My antibody test for valley fever came back negative, so my pulmonologist and my neurologist are confident these lung spots are not caused by valley fever. They both said there is a .01% chance that i could have valley fever that doesn't produce antibodies, but with odds like that, we are pulling it off the table. So the lung spots have no explanation. I will have another chest CT scan in three months to check for any changes. I asked my pulmonologist if he thought there was any way this could be connected to my bigger medical case, and he said that was a good question to ask my neurologist. So I did. The neurologist says the only thing he can think of that would connect my lung spots and brain lesion would be neuro sarcoidosis. But he said it isn't acting like that, so he highly doubts it is. His conclusion about the lung spots is that he has no explanation for them. He did say its possible they are granulomas from something I inhaled in the past, which would mean they are currently harmless. The follow up CT will hopefully make that more clear.
ANOTHER RANDOM DETAIL...
Another thing we have no explanation for is weight loss. In a matter of about six weeks, I lost fourteen pounds despite eating and resting regularly. Valley Fever would have explained this weight loss, but now we are saying I never had valley fever. My neurologist admits that this is another thing he has no explanation for. As frustrating as that sounds, I actually prefer his honesty.
BRAIN LESION DISCUSSION
As for the brain lesion, my doctor says there have not been any significant changes. It is still the same size, and still enhancing as strongly as it was when we first found it. What we thought was a slight improvement before, actually wasn't significant. The most important thing right now is still addressing and controlling this lesion. My neurologist said there are plenty of doctors, including the docs at St. Joe's, who would want to do a biopsy at this point. But we talked (again) through all the reasons we should wait. He said it doesn't look like neuro sarcoidosis because steroids would have dramatically improved the lesion, it doesn't look like lymphoma because steroids would have dramatically improved the lesion, and it doesn't look like a brain tumor because there is a second lesion (the chances of having two tumors at the same time are very small) and because neither of the two lesions have grown in the past few months. Overall, it's pretty clear that this isn't acting like any of those things. But then I asked the obvious question that we have discussed a million times. I said, "how likely is it that a tumefactive MS lesion would also fail to improve with steroids, not to mention plasma exchange?" He said that's why he has to keep reinventing this diagnosis and strategy. Because steroids should have improved an MS lesion too, and they haven't.
DIAGNOSIS DISCUSSION
Dr. Okuda (my neurologist) said he is still confident that this is Tumefactive MS. I asked if it could be another form of demyelinating disease, or another sub-type of MS. He made a joke about how he has given this question "a little bit of thought" in the past. Haha. I do know that he thinks about my case often and that he has considered it from every angle. He said that within the MS family and other demyelinating diseases, it is the size of my lesion that gives it away. He said this large size is the calling card of tumefactive MS. If it's a demyelination, or MS, he is confident it's Tumefactive MS.
STRATEGY DISCUSSION
I asked Dr. Okuda what the research says about lesions that enhance as long as mine. To his credit, he told me the truth. He said there isn't any research about lesions that enhance this long. He said that while investigating Tumefactive MS, he has found doctors who have seen this before, but it seems to be extremely unusual. He said that this scarcity isn't necessarily a fair read though, because many doctors treat these lesions with chemotherapy, which would stop the lesions from enhancing by shutting down the immune system and stopping the body from attacking it's own brain tissue. He said chemotherapy is something he is trying to protect me from. For now we are going to move forward with the Tysabri and pray that it works. Dr. Okuda is actually really hopeful, even confident that it will dramatically improve my brain lesion and my quality of life. I was glad to have this discussion because Tysabri seems so extreme and risky to me. But knowing that our next step could be chemotherapy makes me very grateful that we have something else we can try. I am also very grateful for a doctor who is doing everything he can to protect me in this uncertain battle. I honestly wouldn't trust these decisions to anyone but him. I think there are few doctors out there who could resist doing a biopsy or jumping to chemotherapy after so much time has passed without resolution. We do know there is a chance that we are completely wrong about the diagnosis, but we have enough reasons to be confident in our plan, that we are comfortable taking these precautions.
My first Tysabri treatment is this week on Wednesday. Dr. Okuda says we should know if it's working within about eight weeks. We'll continue with regular MRIs and hope that things start to improve! My next MRI is actually in a couple weeks, but that is just to keep an eye on things like usual. My November MRI should tell us if the Tysabri is working. Fingers crossed and praying that it does!
Thanks to everyone for reading my blog! I appreciate the emails and messages I get from several of you. It really does mean alot. I apologize for any that I may not have responded to. When I have a rough week, a million details get lost. But please know that I do read every message and it means alot! To those of you with Tumefactive MS, keep fighting the fight! It's often very confusing and overwhelming, but every day of life is worth the struggle. Message me when you need to talk. mandyclive@gmail.com
All my best,
Mandy
Wednesday, August 15, 2012
MRI Results and New Treatment
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
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, 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
Thursday, May 31, 2012
Good News...finally!!
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
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
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
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