I have MS. Let’s celebrate!

I recently wrote an email to a friend I had lost contact with over the years. She knew me back in high school and a bit afterwards, but time and circumstances had conspired to allow us to lose touch with each other. These days any type of answer to the question “what have you been up to?” has to include Multiple Sclerosis. My situation in life and day-to-day experience is too wrapped up in my medical challenges to ignore. I read back the paragraph I had written and it sounded pretty ‘woe is me’ even though I was just relating facts and not commenting on how I felt about them. I added a sentence at the end of the paragraph: “On paper my life right now is pretty much a series of low points, but I’m happier now than I ever was. How unexpectedly delightful is that?!” And it is true. Being diagnosed with Multiple Sclerosis was one of the best things to ever happen to me.

What a weird statement to make, right? Well, I didn’t say that having MS was a good thing. It’s not. Really, really not. If I had a magic wand and could make MS disappear I would in a heartbeat. No consideration required, it’s a “no brainer.” But the diagnosis, that is something else entirely.

The summer between my junior and senior years of high school I was really sick. Not like ‘bad cold’ sick. Not even like the flu where you aren’t dying, but it sure feels like you are. No, I was really sick. I had a high fever. I was vomiting. I wasn’t so much ‘sleeping all the time’ as I was fading in and out of consciousness independent of my will. Something was wrong with my balance; I couldn’t stand up on my own. I was paralyzed on one side of my face and down my body. Most frighteningly, I was losing time.

I remember being at the doctor’s office and being unable to do anything other than sit there and cry in pain. There were a lot of blood tests, but those were the only kind of tests that were done. The doctor concluded that I had probably picked up a virus, gave me a shot full of anti-biotics, and sent me home to get better. I wasn’t the sickest person in the house, so there was no one who was “together” enough to advocate for me and call the doctors out on their non-answers and when that was all we could get. And that word ‘probably’ really angers me, even now. The doctors I saw fully admitted they had no clue what was wrong, everything was ‘maybe’ or ‘if it’s this…’ There wasn’t even a suggestion of doing other tests or trying to find out what was wrong with me. The attitude seemed to be if there wasn’t an easy answer than there was no answer. And I was in no condition to argue.

When school started in the fall I went back, against the doctor’s recommendation. What a bad idea. I ended up missing about half of my senior year. Eventually I got better and didn’t much think about what had been wrong with me because it was over, and I was glad. I just wanted to put it behind me, and to be honest there were other things happening in my life at the time that took over.

That is when a pattern started that would continue for almost 15 years. Every few years something would go very wrong with my health. The symptoms varied each time. No doctor really looked into my past medical problems, they just focused on the current ones. I’d be really sick for a while. I’d get a diagnosis. I’d do whatever “treatment” the doctor recommended. It wouldn’t help, but then it wouldn’t matter anymore because I’d start getting better on my own.

I wish I’d kept a list of every diagnosis I was given over. I know Mono was mentioned more than once. Chronic Fatigue, Epstein Barr, and Fibromyalgia each had their turn. Arthritis was also a favorite. Some doctors got really creative with their guesses. After telling me I wasn’t depressed, one doctor put me on anti-depressants. Another doctor told me that I had some rare form of bi-polar disorder where there were no mental symptoms, only physical ones. Every time it was the same deal. The symptoms, diagnoses, and doctors changed but the pattern did not. Even when I was feeling healthy I was aware there was something wrong with me, and I started living in a constant state of waiting for the other shoe to drop.

And those were just the things doctors told me. Friends and family who had only the best of intentions would tell me that it was all in my head, what I really need was a good shrink. I was told it was an allergy, I needed to keep a cleaner house. I was told it was my diet, I needed to eat more vegetables. Once I was even told that I was just lazy, as though the person speaking could “tough love” me into being healthy. Some people in my life genuinely thought I making it up, or possibly I was experiencing physical symptoms because I wanted attention so badly.

Once when I was really sick I asked a family member for help. At that point in time I could barely get myself dressed and to a doctor’s appointment. One specialist would refer me to another type of specialist, who would then tell me it wasn’t their field and refer me somewhere else. It was a horrible, vicious cycle and I couldn’t advocate for myself to make it stop. I called this person and explained what that I needed someone who could take me to appointments and listen to what the doctor said. I needed someone who would ask questions, and be able to remember (or just write down) what I was told from one appointment to the next. Basically I needed someone to advocate for me, to be a “grown-up” or parent. This person I asked for help then told me that the only thing they would help me do was check into a mental institution, and that if I didn’t admit this was all in my head they wouldn’t have anything to do with helping me.

That story is the most blatant example of the “it’s your own fault” attitude, but it wasn’t the only time something like that happened to me. The worst part, I think, was that even though I knew something was actually, physically wrong with me I had no proof. Sometimes I’d wonder was I crazy? Did I actually need to be in a mental institution as was suggested? Was I doing this to myself? I didn’t want to be sick, I truly didn’t, but I didn’t know what was wrong so I couldn’t do anything about it except fear it.

The cycle repeated. In late 2008 I started feeling really sick again. This time I had a headache worse than any other I’d ever experienced. It didn’t seem like a migraine, I’d heard what those were like and it certainly made sense since this headache wasn’t like any other I’d had. There was one specific place in my head that hurt, and it hurt worse if I looked up or to the right. Left was okay, but right was agony. I was sensitive to light. I was dizzy. I was nauseous. I stayed in bed with the shades drawn almost all the time in an effort to “sleep it off” like it was something rest could cure. I mean, that made sense, in the past when things went inexplicably wrong with me time and rest were the only things that consistently made a difference. But then a new symptom popped up, I was seeing spots in my right eye. I figured it would go away with more rest and I made an effort to keep that eye covered and use it as little as possible to let it heal.

The strategy that had always worked in the past wasn’t working. I was getting weaker and less able to get my body to cooperate. Even walking down the hall to the bathroom was challenging. And I had lost all vision in my right eye. This round of whatever-it-was started not long after a very stressful personal event in my life and it kind of reinforced the whole “you are doing this to yourself” fear that had been planted so many years back. I reluctantly went to an urgent care expecting to get eye-drops or something along those lines, and another diagnosis of who-knows-what that would be meaningless and frustrating.

Looking back I think the Urgent Care Doctor knew exactly what was wrong with me. He refused to tell me anything, but he said it wasn’t a migraine or sinus pressure or any of the usual ‘headache’ culprits. He insisted I go immediately to see an ophthalmologist nearby. The ophthalmologist ran a few tests and looked in my eye. I think he also knew exactly what was wrong with me because he told me to go to the closest hospital and specifically ask for a brain MRI and a spinal tap. He repeated it a few times but even when I asked him what he suspected he wouldn’t say. I ended up sitting up all night in an emergency room waiting area before I could be seen. (And there aren’t enough thanks in the world for the friend who stayed with me pulling an all-nighter, leaving only when she had to go home to her baby who would be waking up soon.)

County Hospitals are pretty bad places. They are where people go when they don’t have the resources to get medical care anywhere else. They are underfunded, understaffed, and overburdened. I experienced multiple botched tests including a botched spinal tap (ow!) and had to raise a ruckus with the nurses to get them to follow doctor’s orders. In every single instance it was a case of the hospital staff not having the training or resources to do their jobs properly, I did not experience a single instance in which I felt the employee didn’t care or was just being lazy. There were just too many patients and too few qualified people. I’m not looking to get into a political debate with anyone and these facts aren’t really relevant to this post, but I feel it is important to share them.

I ended up spending almost a week in the hospital. I was lucky, I had a steady stream of friends in and out of my hospital room at all hours. People brought me books, snacks, stuffed animals, flowers, my favorite tea, anything to show me they cared and wanted to try to make things a little easier on me.

I was diagnosed with Optic Neuritis pretty quickly and given IV medication that started to restore the vision in my right eye. I never recovered my vision all the way, but in those first few days the difference was immediate.

What I didn’t know, and I think the urgent care doctor and the ophthalmologist did know, was that Optic Neuritis is often a symptom of Multiple Sclerosis. MS is diagnosed by an MRI of the brain showing lesions and a Spinal Tap ruling out a number of other things. It took a few days to get the tests done, but I was finally showing MS symptoms in front of people who knew what they looked like. “Relapsing Remitting Multiple Sclerosis” fit the exact pattern I’d experienced over all those years, and finally someone realized it.

I don’t remember who all was in the room when the doctor came in to give me my diagnosis. The hospital I was in was a teaching hospital so the doctors never came in without an entourage of students writing things down and quietly staring at me. I know that I had heard someone say “MS suspicions” at some point because, even though I didn’t really know anything about MS, I wasn’t surprised to hear the words. As soon as the doctor told me my first reaction was “just like President Bartlet!” which seemed to confuse the group of people in the room. I’m sure a few of the medical students wrote down “doesn’t seem to know who the president is” or something along those lines. They went from watching me like an animal in a zoo, to watching me like a crazy animal in a zoo. Even when I explained that the fictional President from the TV show The West Wing had MS I was greeted with blank stares. Oh well, can’t win ’em all.

I remember a nurse coming in with papers on MS printed from the internet. Later someone came in with pamphlets from the National MS Society. (I didn’t know a diagnosis came with so much homework.) A Priest stopped in to visit me, and even offered to track down a Rabbi if I wanted. A counselor of some sort wanted to talk to me about how I was feeling. (“tired, and you?”) But the truth is that I was feeling physically battered and bruised, but emotionally… Emotionally it was good. I mean, my head still hurt like crazy and you could still sneak up on me from the right side but no one was telling me this was my fault. No one used the word “maybe” when telling me what was going on.

Finally, finally I had some answers. And that made all the difference. This wasn’t something I was choosing; this wasn’t “all in my head” or any of the other things that had been suggested to me over the years. I had a name of something, something definitive. After almost 15 years of not knowing, just having the words “Multiple Sclerosis” felt like a gift. There were other people out there who had it. There were places I could go to get more information and to learn what was ahead. This is a case when the fear of not knowing is worse than anything, and I finally had the keys to unlock the information I needed. Life didn’t get easier, in fact it’s only gotten harder, but it’s gotten better.

I guess the closest analogy I can think of is being hopelessly lost in a strange city, and every time you ask directions you are told to go a completely different way than the person before had told you to go. You’re going in circles, at the mercy of other people, and none of them are helping. You are spending so much energy and effort, and getting nowhere. Getting my MS diagnosis was kind of like finding the freeway. You’re not home yet, but you finally know where you are and can start figuring out where you need to go.

It sounds so weird to say, but that is exactly why getting my diagnosis was one of the best things that ever happened to me. I’m not saying having MS is a good thing. Quite the opposite; on the list of ‘good things’ MS doesn’t even register. It’s a crappy, crappy disease that does its best to interrupt everything in your life and take away everything you love. Fighting that takes every bit of strength, both mental and physical, you have. But knowing you are not alone, knowing there are other people going through something similar, simply knowing it is a real thing and not in your head, these are invaluable things that were given to me along with my diagnosis. I am grateful.

19 thoughts on “I have MS. Let’s celebrate!

  1. Amber

    I love this!!! What a beautiful write up about how this all came about and how it’s been a good thing in your life (that you would totally get rid if if you could.) I, too, was wondering if when they gave you the diagnoses if you thought “Oh, hey that’s what President Bartlett had.” You did not disappoint. I lol’d at the “She doesn’t know who the President is.” Long comment short; i love you. *HUGS*

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  2. raybarnhart1968

    Wow, what a journey! I’m glad that you got your diagnosis, I can’t imagine how confusing those 15 years were. I hope it’s okay that I repost it to FB, I have a feeling that your story is not an isolated case and maybe someone will read this and it will help them on their journey toward diagnosis. Seriously, this is a very special
    post!

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  3. Laura Loscalzo

    Hi Jenny, this is quite a powerful piece – have you considered sharing this with the MS online community? Talk to you soon. Love, Laura

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  4. Kimberly Hirsh

    This is beautifully written, Jennifer. It’s so hard to explain why we might have a little fist-pump or “YES!” moment when diagnosed with an invisible illness. It’s such a relief when someone finally validates you saying, “This is NOT how life is supposed to be.” And it’s the start of a long, hard, road. But at least you’re on that damn road.

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  5. shawna

    Hi Jennifer this is an amazing story. For the past year I have had a lot of problems that doctors can’t seem to figure out what’s wrong with me. But over 2 yrs ago I started having neck pain and lower headaches and dizzy spells. On Dec 31st last year out of the blue I had strange warm tingling sensation in my head. I felt I was about to pass out. My heart rate increased it was horrible. I still have those episodes but not always as bad. Now other symptoms have started. Headaches getting slot worse. Arms hands legs and feet get numb and tingle at different times. My head face and bottom lip tingle and goes numb for a bit. I have had vision problems but blamed it on the fact I need new glasses. I had that done no difference I have no energy and always seem to feel bad. I do have good days but bad days more than good. My family especially my husband thinks I’m fine and its nothing(all in my head). I know it’s not nothing and I’m so tired of always being sick. I do however have an appt to see a neurologist. I hope I get answers soon.

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      1. shawna

        Thank you! Me too. I’m so frustrated with all of this. We are going on a cruise next Saturday and I’m scared I’m going to have problems while I’m gone.

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  6. stargzrblog

    Thanks for such a well-written description of your journey. My journey to diagnosis was also 15 years. But in my case, that journey *started* with optic neuritis. I was seen by 2 different neurologists at that time, and neither seemed particularly concerned or interested enough to even ask for a follow-up appointment. In retrospect, their disinterest seems beyond baffling, given that I was presenting with a clinical case of optic neuritis, and my MRI at the time showed some possible demylination. (They both focussed on the word “possible” that was in the MRI report, and said that the spots showing on the MRI could be caused by lots of things, such as my history of migraines. Those same spots still show on my MRI, and my current neurologist says that they have the locations and morphology of “textbook MS lesions”). We definitely need to be our own advocates for our health, when we know that something just isn’t right!

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    1. Jennifer Kaplan Post author

      I wish I could say I am shocked by your doctor’s comfort with a lack-of-diagnosis, but the more I hear from other people the more I think it must be very common. I’m so glad to hear you are with a good neuro now!

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  7. Lorraine Nevarez Gonzalez

    Hi Jennifer, this is beautifully written, I’m so happy to see you have continued to maintain your positive outlook! I know it’s been a while since we last talked, but I have had a similar medical journey, mine finally ending up with a diagnosis that is often misdiagnosed as MS – Cerebral Cavernous Malformations (or Cerebral Angiomas) – with very similar symptoms that can occur whenever my brain feels like acting up.
    http://www.angiomaalliance.org/pages.aspx?content=62&id=50
    Luckily, most days the symptoms are nothing worse than a horrible headache, but I totally know what you mean about it being so easy to spin yourself out of control with worry about what the future has in store for you. Anyway, I only bring this up because I too had so many doctors puzzled about what was wrong with me, and had to go through many MRIs, spinal taps, and other tests before I could get a diagnosis. Many doctors are still unaware of this condition. So, I see that you are doing a wonderful job as an advocate and possibly helping others with their own struggles to be diagnosed – I offer my own information on my disease as well. πŸ™‚
    Lorraine

    Lorraine Gonzalez

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    1. Jennifer Kaplan Post author

      Lorraine! Thank you for your kind words. Wow, I’ve never even heard of your condition, thank you for linking me to info. We can be the brain-wonder-twins, yes? I’m so happy you reached out, I still think about you and your family from time to time. My email address is still the same… Keep in touch! πŸ™‚

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  8. Mazal HaMidbar

    i had no idea that any of this was going on. i’m sad to know but glad to know, if that makes any sense at all. i’m seeing you on livejournal, now following you on Twitter; I’m @HadassahHannah

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