I'm wondering what to do after this baby arrives.
Should I breastfeed for 3 weeks? 4? Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved? Should I get steroid treatment this far away from the initial injury and hope it improves things?
Where do we go now? (Cue Guns & Roses)
I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth? Anyone have flares while pregnant? What did your neurologist recommend?
Thanks, all!
MSloan
Showing posts with label lesions. Show all posts
Showing posts with label lesions. Show all posts
Friday, March 4, 2016
Saturday, February 27, 2016
Two Years Is Not Very Long
Good morning readers,
Today marks 2 years to the day that I woke up and could not feel my left leg. Technically, yesterday was, but this marks the day that I really 'knew' what was going on. I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.
Something was wrong ... and I knew instantly that it was MS. I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty. I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion. I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on. It was a sad and oddly supportive time. I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait.
Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened). I had Multiple Sclerosis. I read the report describing several 'foci of restricted diffusion,' the title of this blog.
Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child. I am 32 weeks along and she is kicking away today. I am just as scared as I was two years ago, but for entirely different reasons. I have a new reason to be excited for the month of March, and it isn't job interviews and trips. It's getting ready for my Tesla.
I wish I could say that in these last two years that I have really learned a lot. I have, but so much of it has been negative that I choose to try and focus on other things. My mother has declined into a complete state of paranoia, frequently. I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot. Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.
Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband. It's a lot of things to take in!
Love to all, MSloan
Today marks 2 years to the day that I woke up and could not feel my left leg. Technically, yesterday was, but this marks the day that I really 'knew' what was going on. I had an inkling the day before, but when I woke up for the second morning and still could not feel my left leg and my right foot, it was confirmed.
Something was wrong ... and I knew instantly that it was MS. I had known deep down since January of 2010, but two years ago today I had no more room for uncertainty. I had mentioned it to my coworker, who had MS, and she nodded at me in a knowing fashion. I had hoped to keep it under wraps, but my boss walked in on us talking about it and she also knew what was going on. It was a sad and oddly supportive time. I called a neurological group close to where I was working, and got no answer - I was not sure what to do, or if it was safe to wait.
Two years ago tomorrow, I received the official diagnosis from the emergency room (though they would say they gave me a 'tentative diagnosis,' we all know what really happened). I had Multiple Sclerosis. I read the report describing several 'foci of restricted diffusion,' the title of this blog.
Today, in juxtaposition to this memory and scary time, I am having a baby shower for my impending child. I am 32 weeks along and she is kicking away today. I am just as scared as I was two years ago, but for entirely different reasons. I have a new reason to be excited for the month of March, and it isn't job interviews and trips. It's getting ready for my Tesla.
I wish I could say that in these last two years that I have really learned a lot. I have, but so much of it has been negative that I choose to try and focus on other things. My mother has declined into a complete state of paranoia, frequently. I am now reading a book on healing from a narcissistic parent, and I'm finding that helps a lot. Makes me feel less alone, though I know I have a long way to go before I will be really mentally and emotionally capable of caring for my daughter the way I should.
Wow, February seems to be a big month for me - two years ago tomorrow I was diagnosed, today is my baby shower, Monday is my 8 year anniversary of being with my husband. It's a lot of things to take in!
Love to all, MSloan
Saturday, December 5, 2015
Bye bye, right eye
I am... more than a little bit disappointed. Well, I guess disappointed isn't the right word.
I feel mislead.
I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses. Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.
As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.
The first I wrote about a few weeks ago; my feet went numb again. This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom. Usually, that is brought on by water retention and compressed nerves due to weight gain. I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness. Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else. VERY weird. Like, touch your arm just below your wrist and imagine you are feeling it at your elbow. Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.
Well, now I have had another serious symptom. I can't see out of my right eye.
Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful. Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently. But by the time I got home, it seemed to be relatively normal. I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.
This time, there is no pain. I have a headache daily because of my pregnancy and it feels different from my typical tension headache. This one is more likely hormonal or dehydration, which I try to battle as much as I can. Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it. So, for the most part, I am thankful that this one has no pain.
Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right. I think I took my glasses off at least five times to clean them, to no avail. I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right. I went to my pregnancy class and thought, "well, maybe it's the lighting in here." I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.
Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right. I turn to my right to get tissue and my earplug. Nope... all fuzzy. I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head. If I had any other job, I would have stayed home. Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.' After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.
This sucks. This SUCKS. If you were to draw a square, the entire left/bottom quarter is essentially missing. In one eye alone, this isn't the worst thing in the world. But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting. When things move in this area of my vision, it looks like static. My eye is working okay, it's my brain that's all screwed up!
I can't do the usual steroid treatment because I am pregnant. I feel so helpless. Like, what should I do? What will happen? It seems to be getting darker. I don't know if it's getting bigger. I don't know how long it will take to get better. Thank God I am left-eye dominant and look into people's ears on the opposite side. This is just ... unfair and ridiculous. I feel lied to, mislead, and angry. I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system! Why have you not calmed down yet??!!
Oy.
MSloan
I feel mislead.
I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses. Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.
As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.
The first I wrote about a few weeks ago; my feet went numb again. This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom. Usually, that is brought on by water retention and compressed nerves due to weight gain. I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness. Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else. VERY weird. Like, touch your arm just below your wrist and imagine you are feeling it at your elbow. Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.
Well, now I have had another serious symptom. I can't see out of my right eye.
Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful. Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently. But by the time I got home, it seemed to be relatively normal. I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.
This time, there is no pain. I have a headache daily because of my pregnancy and it feels different from my typical tension headache. This one is more likely hormonal or dehydration, which I try to battle as much as I can. Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it. So, for the most part, I am thankful that this one has no pain.
Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right. I think I took my glasses off at least five times to clean them, to no avail. I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right. I went to my pregnancy class and thought, "well, maybe it's the lighting in here." I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.
Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right. I turn to my right to get tissue and my earplug. Nope... all fuzzy. I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head. If I had any other job, I would have stayed home. Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.' After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.
This sucks. This SUCKS. If you were to draw a square, the entire left/bottom quarter is essentially missing. In one eye alone, this isn't the worst thing in the world. But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting. When things move in this area of my vision, it looks like static. My eye is working okay, it's my brain that's all screwed up!
I can't do the usual steroid treatment because I am pregnant. I feel so helpless. Like, what should I do? What will happen? It seems to be getting darker. I don't know if it's getting bigger. I don't know how long it will take to get better. Thank God I am left-eye dominant and look into people's ears on the opposite side. This is just ... unfair and ridiculous. I feel lied to, mislead, and angry. I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system! Why have you not calmed down yet??!!
Oy.
MSloan
Monday, October 19, 2015
Chat MS: October 19th, 2015
Hello, readers!
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST. Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening. So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments. By talking about the issues, we can make progress!
Let's get started! This week's theme was Women with MS.
Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?
I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease. I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider. Though despite the higher numbers of women with the disease, it seems to be much more severe in men. No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.
Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?
I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well. Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009. I describe this time in my life as, 'when I got sick.' I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.
Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?
I did not - and I was terrified that it might me I couldn't have children. I am in a religious union with my husband, who comes from a large family and always wanted kids. I was always on the fence. But now, I had a choice to make. I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course. That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe. We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug. I am 13 weeks pregnant, and so far things are going well!
Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?
Can't take it back now :), but of course there are fears. I am afraid I will not have the energy to keep up with my children. I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness. It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages. I worry I could lose my sight. I worry about my cognition. But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass? Shit happens.
Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?
Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues. I can't sleep, and am very tired, but not "MS Tired." I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous. I have restless leg syndrome, but it doesn't feel like the weirdness of MS. Time will tell, I guess.
Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?
Hell. Yes. I hate that some people really don't think there's a connection. These are the same people who don't believe there is a connection between menstruation and migraines. STUPID. My first major flare happened in the middle of my period. To this day, my biggest symptoms that hit around my period are severe fatigue and nausea. Oh, the nausea. No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010. I was certain something was terribly wrong with me and no one listened. Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs. Which are poorly named.
Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?
Dude. Chocolate. And Excedrin. I need the tylenol/aspirin/caffeine mix. But other than that, it's a wait it out system, and I pray I don't have a flare. I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.
Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?
Whoa there, nelly. I'm only 27. Let's take childbirth first, ok?
Alright, everyone! Your turn! Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)
Monday, May 12, 2014
Star Wars
Today, I got a call from my neurologist. Turns out, they were able to get my brain MRI results despite my insurance not covering the cost - I suppose I will get a big bill for that later, but I'm glad that they saw them, as it turns out my last round of steroids was, yet again, unsuccessful.
My MRI shows that my lesions are not necessarily getting bigger, but now there are new ones. This is not a good sign. Though it is somewhat amusing to consider that my body's inflammation 'laughs in the face of steroids,' muahaha!
I have done a little research on the drug they are going to put me on next. Let's learn about it together!
1) What is it?
The name of this drug is 'Acthar,' which reminded me an awful lot of Star Wars, hence the comic at the end of this post. I hope you find it mildly amusing :)
Acthar is called an Adrenocorticotropic hormone, or ACTH. It is meant specifically for acute exacerbations of MS (though I don't know if I could call this an acute exacerbation if I've had this for three months and it just isn't getting better. I don't feel good about that, but let's move on!)
2) What makes Acthar different from the steroid injection treatment?
Acthar is not a steriod, but it acts something like one. It forces the body's adrenal gland to go on hyperdrive and produce a hormone called 'Cortisol.' You might recognize that as a word you hear in diet pill commercials as the 'stress hormone,' which increases body fat in certain places and in general just causes all sorts of problems. Well, Acthar wants to use those crappy side effects of Cortisol to treat your MS! It basically tells your immune system and inflammatory response to STFU. It is essentially a natural steroid. It can increase body fat, increase fluid retention, decrease your body's ability to process glucose, increase your likelihood of stomach ulcer - lots of problems.
Acthar is also not an intravenous drug, meaning it is actually given in the muscle, like you would a flu shot. It shouldn't be taken intravenously because it can spread through your system at too fast a rate; this is why heroine addicts prefer a direct vein to shooting themselves in the leg. You have to give this drug to yourself in a syringe for a number of days when you receive it. I will not be doing that, I will be checking into my neurology office every day for 5 days until this is over. I have put on a brave face this whole time, but I really do not like needles, and I don't know if Steve has the strength to do this for me right now. I haven't told him yet.
It will be a fun ride for sure.
3) Why do you need this drug?
You need this drug if you have 'failed' steroids, which means you are still having an exacerbation and inflammation after being treated. I have failed steroids twice now, and have new lesions, which means somebody, somewhere, needs to tell my inflammatory system to STFU. That is where Acthar comes in.
My insurance company should cover this now that it is a justified use of the drug, you have to fail it twice for the company to give it to you as these little vials cost about $50,000 (that is straight out of the horse's mouth, the neurologist, when telling me about this a few weeks ago as the next option).
4) Okay, so it should halt the progression. What are the downsides?
It can cause wicked bad mood swings. There's a huge paragraph warning about this; I already suffer from mood swings with my depression, so I'm sure I'll be way pleasant in the next couple of weeks. General body swelling is another side effect. This is the sort of drug that you absolutely cannot accidentally become pregnant while on, too.
I'm going to go grab my laundry now, as my life cannot stop though my brain clearly wants me to take a break! I hope this helps someone out there get a better idea of what is up ahead. I will continue to update as a know more. Thanks for listening.
Let's hope Admiral Ackbar isn't right this time...
Wednesday, April 9, 2014
Merit Badge for Demyelination
Oy. Okay, so today has been one of those really rough days.
I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine. Which, if you've never had to do that, feels like torture after about 80 minutes. It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"
So I was hoping that the MRI experience would be over for this year. WRONG.
Today, I was supposed to go in to start Gilenya. I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process. So I decided to go in way early just in case. I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else. So who else wouldn't be freaked out?
When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed. But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.' I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.
WHOA, hold the phone, I failed? Let's recap. I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right. After a battery, got diagnosed, then treated with a 5 day course of Solumedrol. It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway. The 9mm lesion in my left temporal lobe is now 3.3cm. Centimeters!! Tripled in size. Whoa.
Just, whoa. How are you supposed to feel about that?
They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP. I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half? What a freaking nightmare!!!
Oh, and did I mention ... happy birthday to me? OY!
I got my contrast/non-contrast MRI update on Friday, and of course had to spend the 90 minutes stock still in the machine. Which, if you've never had to do that, feels like torture after about 80 minutes. It's not so difficult to fall asleep about 10-15 minutes in, but it's the last 10 minutes that you're screaming in your head, "Get me out of here!"
So I was hoping that the MRI experience would be over for this year. WRONG.
Today, I was supposed to go in to start Gilenya. I had a difficult time reaching my neurologist over the last few days because there must be a problem with their phone system; I didn't even get a reminder call about when I needed to show up and start the process. So I decided to go in way early just in case. I was, to be fair, fuming a bit because the only thing I had heard from them this week was an ominous phone call on Monday night: "Please give me a call back as soon as possible, thank you," nothing else. So who else wouldn't be freaked out?
When I went in, I basically got my hand slapped for not signing a piece of paper I didn't know I needed. But then the MA started telling me that my doctor was concerned with my latest MRI, and didn't think I should do Gilenya, and that I needed to do something 'more aggressive.' I didn't know what this meant - but then she continued, saying that my lesions have gotten significantly bigger since the previous MRI, meaning that I failed the first round of Solumedrol after my ER visit.
WHOA, hold the phone, I failed? Let's recap. I went to the ER, feeling ok but numb from the waist down on the left side and foot on the right. After a battery, got diagnosed, then treated with a 5 day course of Solumedrol. It did nothing for my numbness, just made me feel like crap - and it turns out it did virtually nothing anyway. The 9mm lesion in my left temporal lobe is now 3.3cm. Centimeters!! Tripled in size. Whoa.
Just, whoa. How are you supposed to feel about that?
They're going to put me on another round of the steroid (that made me feel like hell) and then another week+ of the oral version to taper it, then start me on the Tysabri infusion ASAP. I need to find a place to do bloodwork pretty much immediately to get on the Tysabri - and did I mention that I'm moving to another state in about a month and a half? What a freaking nightmare!!!
Oh, and did I mention ... happy birthday to me? OY!
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