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
Showing posts with label scary. Show all posts
Showing posts with label scary. Show all posts
Saturday, February 27, 2016
Tuesday, March 10, 2015
Trying to Heal
Hello!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Well, I feel somewhat obligated to update this. Because we are so close to one year, it feels silly not to.
I have had a wretched last few days. My mother was collected by her local police department for sending several emails their way, that were somewhat indicative of suicidal thoughts. She was taken to a hospital and spent 72 hours on mental watch. I have not been in contact with her since, as I cannot continue to be exposed to this much negativity and stress.
I mean, come on, people. My brain eats itself when I get too stressed, and I couldn't feel my cheeks yesterday. NOT A COINCIDENCE!
Because I'm in a sharing mood, I want to hear from you - what's the greatest stress you've had to resist with your MS?
Love all!
Sunday, February 22, 2015
361 Days of MS
Hello all! It's been a while!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
I apologize for not giving frequent updates - but that is a GOOD thing. It means I haven't been experiencing TOO many problems, and that's the goal, isn't it?
Since November, I have had strange stomach pains that I thought were MS hugs, and now I am not so sure. Initially thinking it was possibly appendicitis and/or ovarian cysts, I have had a few ultrasounds and a HIDA scan, and it turns out my gallbladder only works at 25% - which is likely one of the reasons for my stomach pains. I can't quite figure out which pains are due to this issue and what I can attribute to the MS - which is somewhat disconcerting. Anyone who has experience with MS hugs or other abdominal issues is welcome to comment, please! As I type this, I have a nagging pain in my lower right, the same one I had when I initially started getting worked up - it is not my appendix, so who knows what else could cause that?
It has been almost a year since my MS really 'began.' I put that in quotes because I know my symptoms really started about 5 years ago, but on February 26th last year, my left leg went numb. It no longer was an ignorable problem. After many months of Solumedrol treatments and no improvement, continued lesion growth, five shots of Acthar, beginning Gilenya and anti-depressants, moving to California and starting a new job - - - there are many changes.
I no longer have constant numbness in my left leg. I can work out now without any tinglies as well. For the most part, I feel back to 'normal'! It's a great improvement. But I am aware that things aren't perfect. My left toes occasionally go numb and tingle. My forearms have the most numbness, though it never lasts an entire day. Sometimes it is there, sometimes it is not. The most recent symptom is a constant ringing in my right ear - I would assume that is a serious issue doing what I do, but I attribute that to the MS and my existing hearing loss on the left side means it would be unilateral.
My mood has improved dramatically since last year as a result of the anti-depressants, which makes me happy and sad at the same time. My husband and I want to have a family, but this particular anti-depressant, along with the Gilenya, are very dangerous for a pregnancy. To go off the medication at this point puts me at a number of risks that we have to weigh. I was hoping at this point in my life that I could secretly go off my birth control and let nature take its course, but now I have to be more vigilant about my pill than ever. Combining all the abdominal pain symptoms with some other issues I have been having, things point to such sinister things as ovarian cancer - so it's a scary time as much as it is a relieving one.
In the meantime, since about September of this past year, my family has gone through a huge change. My father was accused of murder early in 2014. My mother, who I am already certain has a myriad of psychological issues, has gone off the wire in regards to the crime and is now convinced my father is stalking her. I consistently tell the joke that everyone loves my father but my mother - but that really is true. Meanwhile my sister and I are getting bombarded with daily emails about how not ill she is, which only makes us feel more and more confident that she is, indeed, disturbed. I have always told people that watching "Mommy Dearest" is very close to watching an autobiography of my childhood. I know this is a bit off topic from the MS, but seeing as it tends to be heavily influenced by stress, I figure it is worth mentioning in this medium.
So how is everyone else doing? Have any of you had any new symptoms, treatments, or issues you need to get off your chest? I'm all ears (or eyes, as it were). Love to all!
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!
Friday, April 4, 2014
Don't Move, Don't Breathe, Don't Do Anything Except... Pray
Today was a rough day.
You know what I mean, rough day? Like, everything makes you want to cry kinda day? It was definitely one of those days.
Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again. We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished. Way stressful. So let's start the day there.
I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness. As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things. And of course, this morning, I had someone who was on the higher end of MS symptoms.
I truly love my job, because the people I see need me as much as I need to see and help them. It is healing on both fronts. But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others. You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.
It doesn't help the heartache when they leave that there's very little you can do. And it doesn't help you feel hopeful that your own condition won't look like that in a few years. How else are you supposed to feel about MS when that is what you see every week?
Later today, I had another appointment with the radiologist and hour from work. I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes. That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.
Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.' It's really how you feel. And about 80 minutes in, I started to lose it, and wanted to scream to get out. Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride. When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI. I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.
Obviously I made it through okay, but what a nightmare. I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me. Oy.
At least I grabbed a bagel on the way home. It's Friday, right? Until next time -
You know what I mean, rough day? Like, everything makes you want to cry kinda day? It was definitely one of those days.
Yesterday, my husband got word from one of his dissertation committee members that he may not be able to present his defense at his proposed date - setting us back yet again. We are on the threshold of moving out to California pretty much in the immediate future, and it looks like I will have to move out without him to start my job while he gets things finished. Way stressful. So let's start the day there.
I work in the medical field, and specifically, I see a lot of MS patients for a variety of complaints, mostly balance and dizziness. As such, I see some of the 'worst case scenario' type of people - young women in their 20's and 30's who are dealing with debilitating imbalance, walk with canes, can't feel any of their extremities, have so much difficulty with cognition that they can't list names in alphabetical order - lots of scary things. And of course, this morning, I had someone who was on the higher end of MS symptoms.
I truly love my job, because the people I see need me as much as I need to see and help them. It is healing on both fronts. But it is particularly difficult for me to see MS patients right now because I'm still trying to figure out my illness, and it isn't something you just casually share with others. You want to tell your patient, 'I Understand,' because for some of these things, I do - but you keep your mouth shut, and you treat them the best you can, and you listen the best you can, without interruption.
It doesn't help the heartache when they leave that there's very little you can do. And it doesn't help you feel hopeful that your own condition won't look like that in a few years. How else are you supposed to feel about MS when that is what you see every week?
Later today, I had another appointment with the radiologist and hour from work. I knew they wanted a contrast MRI of the brain, cervical and spine, but I didn't know they wanted both with and without contrast, which means I had to lay in the MRI machine for 90 minutes. That is a VERY long time in a noisy little place where you can't move, have a headache, have claustrophobia, and then have gadolinium put in your arm while they tell you to try not to move while they give you the IV.
Really, like in the movie Atlantis, 'Don't think, don't breathe, don't do anything except... pray.' It's really how you feel. And about 80 minutes in, I started to lose it, and wanted to scream to get out. Something about the sound of the machine when you have the contrast material is different, and it shakes the whole machine, making you feel like you're trapped in a bad car ride. When I have nightmares, I hear sped up speech and repetitive sounds, just like the MRI. I almost started to cry, waiting for it to end, counting up in multiples to try and distract myself.
Obviously I made it through okay, but what a nightmare. I am usually very good with things like that, I hold stock still, but today was so hard to leave and not have someone in the waiting room for me. Oy.
At least I grabbed a bagel on the way home. It's Friday, right? Until next time -
Sunday, March 23, 2014
Bad News or Good News?
My name is Margo. I'm 25 years old. And less than one week ago, I was officially diagnosed with Multiple Sclerosis, or MS. I prefer to call it my brain's "self-destruct button."
Why am I writing a blog? Because MS is scary, and I'm a scientist. I learn best by writing things down, reading more things, then writing things down again. I hope that my experience can help some people find comfort, or even push those who have questions to seek help. I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.
Okay, that's kind of a lie. I had an inkling. A clue. A suspicion. But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'
And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib: "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.' But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."
All of these statements imply a few things. It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something. It implies that MS is the same for everyone. It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.
I am a religious person. But God did not 'give me MS.' I did not 'give myself MS.' What a ridiculous idea. I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of. I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related? What doctor would think I'm not nuts? And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.' That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down. And she thought not eating breakfast was the problem. HELLO?! THIS STARTED YESTERDAY! NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!
Ahem. Clearly I've had a lot of time to be mad at doctors. But I digress.
In 2010, I started having a rash of interesting symptoms. We're talking, first day of January-ish. In December, I noticed that I was having bad mood swings, and my eyesight was really degrading. I couldn't read the TV guide on the screen, when a week before it looked crystal clear. Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches. Turns out, my vision was shot. I had astigmatism, which clearly is genetic as everyone in my family wears glasses. But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.
Then came the nausea. I thought it was the new birth control, and I immediately got off that. Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus. So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way. Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI. But I knew something else was wrong, maybe that was it.
The nausea didn't stop. But the anxiety became unbearable. My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing. But I got married five months before in August, and my best friend and I had a falling out around the same time. My family disapproved of the marriage and I was starting a religious journey at the same time. I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing. I hated my job. My classmates conspired to make me fail because I was accepted early into the grad program. I was surrounded with stress. Why would I be surprised with some anxiety? Some shakes ... that might be normal. Hey, I'm a musician, maybe I overworked my hands. I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers. I was off balance sometimes. Seemed unrelated. And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.
Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions. We talked about it every day. And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter). The MS profile looked a lot like what I was dealing with. But I ignored it. And kept moving forward. For six months, I felt like crap every. single. day. And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.
....
Fast forward to mid-February this year. I had been dealing with some episodic issues that threw me back into feeling like an undergrad. Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling. But no one said I looked odd or pale. My vision seemed to go in and out from great to crappy, but would go back again. I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.
What I noticed was the stomach pain. It was more like a torso pain. Intermittently, I would feel like I was being squeezed like a vice. Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing. Unpredictable pain. And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.
I will never forget that Tuesday. I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster. I spent the entire day cleaning. I cleaned every room and did laundry. I don't do things like that when it hurts to move - but I did it anyway. I couldn't relax when my place was a mess. My husband came home and I told him my back hurt; a usual hip pain I've gotten used to. We went to bed, I intended to go to work the next day no issues, and the day was gone.
But at 4 AM, I woke up to my husband's loud snoring. And I noticed that my left leg felt ... numb. It felt asleep. Like a pinched nerve, or cut off blood flow. I had done a lot of work and my hips hurt before bed, so I turned over. By 5 AM, there was no change. And again at 6, when my alarm went off. No change at all. My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done. Just ... nothing. Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.
I go to school for heavy duty neurological stuff sometimes. I am slender, not diabetic, and couldn't have hurt my back without knowing it. But I know how upper motor neurons work. And I knew when I woke up on Wednesday that I was in trouble.
I casually mentioned it to a coworker. She shrugged at me, thought it was nothing. Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance. Thursday the numbness felt worse, stranger, more debilitating. But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched. Just the sensation was off. I could move them fine. I could drive. I could feel enough of my right foot to feel safe doing that. I called a neurology office and got to answer. How long until this became a problem?
Friday morning, I couldn't ignore it any more. I called in from work and went to the ER. A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began. That was the last day of February, and it was confirmed last Monday that their suspicion was correct. So yes, I've had many weeks to process the possibility. But the strangest part? I didn't cry in my appointment. I was not surprised. I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name. I knew what was going on, but no one had believed me. It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.
How could they? You can't see my self-destruct button. Only I know it's there. I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem. It might not be MS, it might be nothing at all. But don't wait - no one deserves to feel miserable and think they are crazy.
You are not crazy. Maybe you have a self-destruct button, too.
Until next time,
Margo
Why am I writing a blog? Because MS is scary, and I'm a scientist. I learn best by writing things down, reading more things, then writing things down again. I hope that my experience can help some people find comfort, or even push those who have questions to seek help. I have had a lot of experience learning about MS over the years as a healthcare provider, but I never imagined that what I have been experiencing for the last four years was what I was reading about.
Okay, that's kind of a lie. I had an inkling. A clue. A suspicion. But I did nothing.
Why?
Because I kept getting told that what I was experiencing was 'no big deal,' it's 'just anxiety/depression/stress/graduate school/marriage/separation from friends/your mother/your parent's divorce/etc, etc, etc.'
And my favorite ones of all, see if you recognize the pattern and can fill in the ad-lib: "'SO-AND-SO' that I know who is my 'SISTER'S FRIEND/AUNT/FIANCE/BOYFRIEND/ACQUAINTANCE/COWORKER' has MS and they 'DON'T THINK THAT'S WHAT YOU HAVE/DIDN'T HAVE THAT SYMPTOM.' But this 'OTHER PERSON' that I know eats a 'VEGAN DIET/PALEO DIET/MORE DAIRY/LESS DAIRY/LIQUIDS TO CLEANSE TOXINS' and is almost cured from episodes."
All of these statements imply a few things. It implies that they think you are crazy, and clearly what you are experiencing is invisible to them unless you say something. It implies that MS is the same for everyone. It implies that you can cure the problem by eating something, not eating something, clearing toxins, or what have you - and while they are saying these things to be helpful, also makes a dark implication that something you did or did not do is causing your problem, and you can get rid of it by being more conscious about what you eat/use for deodorant/are mindful of in life.
I am a religious person. But God did not 'give me MS.' I did not 'give myself MS.' What a ridiculous idea. I've clearly been dealing with symptoms for some time, but didn't have the guts, the insurance, or the time to get it taken care of. I figured, if my issues were so vague and I could pinpoint them to other problems, why would I think they were all related? What doctor would think I'm not nuts? And how else are you supposed to feel when you go to the doctor for a bothersome issue, and they respond the same way as your friends, and tell you that 'eating more breakfast will cure that.' That gem of a line was given to me by a GP when I was having heartburn so bad I could barely swallow - everything, and I mean everything, hurt to get down. And she thought not eating breakfast was the problem. HELLO?! THIS STARTED YESTERDAY! NOT EATING BREAKFAST EVERY DAY IS IRRELEVANT!
Ahem. Clearly I've had a lot of time to be mad at doctors. But I digress.
In 2010, I started having a rash of interesting symptoms. We're talking, first day of January-ish. In December, I noticed that I was having bad mood swings, and my eyesight was really degrading. I couldn't read the TV guide on the screen, when a week before it looked crystal clear. Sometimes I messed with my caffeine intake, so I assumed that was the problem, and the cause for the interesting and debilitating headaches. Turns out, my vision was shot. I had astigmatism, which clearly is genetic as everyone in my family wears glasses. But now I believe the 'headaches' I was having were not true eye strain - it was optic neuritis, an inflammation of the optic nerve, and it was the start of it all.
Then came the nausea. I thought it was the new birth control, and I immediately got off that. Went to the GYN - felt like I was raped by a wand ultrasound with no warning, and there was nothing wrong with my uterus. So I asked for a urinalysis to rule out a UTI - and they found signs of inflammation and/or white blood cells, so they gave me some antibiotics and sent me on my way. Keep in mind, I had to argue with the nurse to do it, because I had no symptoms of a UTI. But I knew something else was wrong, maybe that was it.
The nausea didn't stop. But the anxiety became unbearable. My entire life, I never had issues with real anxiety - I have depression, and they are NOT the same thing. But I got married five months before in August, and my best friend and I had a falling out around the same time. My family disapproved of the marriage and I was starting a religious journey at the same time. I was applying to graduate school and my husband couldn't relocate, so it was this one program or nothing. I hated my job. My classmates conspired to make me fail because I was accepted early into the grad program. I was surrounded with stress. Why would I be surprised with some anxiety? Some shakes ... that might be normal. Hey, I'm a musician, maybe I overworked my hands. I typed a lot at work - maybe it was carpal tunnel causing some tingling and shaking in my fingers. I was off balance sometimes. Seemed unrelated. And I never dealt with acid reflux until now, but maybe that was the nausea, too. . . I had an excuse for everything.
Oh, did I mention that this was the last semester of undergrad, and my required coursework dictated a class in neurological disorders - - - in which, we were constantly being urged by the professor not to freak out and think we had all of the conditions. We talked about it every day. And here I was, barely able to sit through class and popping Pepto's like candy to keep from feeling like puking (and I am NOT a puker, just to clarify, I am a fainter). The MS profile looked a lot like what I was dealing with. But I ignored it. And kept moving forward. For six months, I felt like crap every. single. day. And it nearly ruined my marriage, it killed my sex life, and my self esteem went down the toilet.
....
Fast forward to mid-February this year. I had been dealing with some episodic issues that threw me back into feeling like an undergrad. Some days, I would be driving in to work on a pleasant Fall morning - and all of a sudden, I would be hit with a pit-of-my-stomach nausea, the shakes, overall crap feeling. But no one said I looked odd or pale. My vision seemed to go in and out from great to crappy, but would go back again. I'm applying for jobs like mad since graduation from my doctorate program is in May - maybe it was the stress again.
What I noticed was the stomach pain. It was more like a torso pain. Intermittently, I would feel like I was being squeezed like a vice. Nothing helped - not Pepto, old and trusty - no way to turn, no massage, no passing gas, nothing. Unpredictable pain. And the last week of February, I woke up with a funny feeling that the pain would just be too much, and I should stay home.
I will never forget that Tuesday. I woke up feeling pretty bad, stomach pain-wise, but the apartment was a disaster. I spent the entire day cleaning. I cleaned every room and did laundry. I don't do things like that when it hurts to move - but I did it anyway. I couldn't relax when my place was a mess. My husband came home and I told him my back hurt; a usual hip pain I've gotten used to. We went to bed, I intended to go to work the next day no issues, and the day was gone.
But at 4 AM, I woke up to my husband's loud snoring. And I noticed that my left leg felt ... numb. It felt asleep. Like a pinched nerve, or cut off blood flow. I had done a lot of work and my hips hurt before bed, so I turned over. By 5 AM, there was no change. And again at 6, when my alarm went off. No change at all. My foot was numb, my calf felt funny, and my thigh was ... well, it was like feeling your chin after getting dental work done. Just ... nothing. Which was fine, and ignorable, until I realized I couldn't feel the toes on my right foot, either.
I go to school for heavy duty neurological stuff sometimes. I am slender, not diabetic, and couldn't have hurt my back without knowing it. But I know how upper motor neurons work. And I knew when I woke up on Wednesday that I was in trouble.
I casually mentioned it to a coworker. She shrugged at me, thought it was nothing. Just like everyone else when I mentioned the nausea, the blurred vision, the shakes, the imbalance. Thursday the numbness felt worse, stranger, more debilitating. But my legs LOOKED fine - no bruises, no change in color, no odd reaction to being touched. Just the sensation was off. I could move them fine. I could drive. I could feel enough of my right foot to feel safe doing that. I called a neurology office and got to answer. How long until this became a problem?
Friday morning, I couldn't ignore it any more. I called in from work and went to the ER. A urinalysis, several draws of blood, leg ultrasounds, three MRI's, and a spinal tap later = the ER doctor wanted to treat me for possible MS, and the steroids began. That was the last day of February, and it was confirmed last Monday that their suspicion was correct. So yes, I've had many weeks to process the possibility. But the strangest part? I didn't cry in my appointment. I was not surprised. I was relieved that he had validated all that I was experiencing, wrapping it all in a tight bow and calling it a name. I knew what was going on, but no one had believed me. It's hard to be MD-phobic and go to the doctor alone when no one thinks you have a real problem.
How could they? You can't see my self-destruct button. Only I know it's there. I hope this first entry enlightened you, and might inspire you to find help if you think you have a problem. It might not be MS, it might be nothing at all. But don't wait - no one deserves to feel miserable and think they are crazy.
You are not crazy. Maybe you have a self-destruct button, too.
Until next time,
Margo
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