Tag Archives: ms

I Have MS

The title of this post is the short story. Below, is the long story.

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It has been a rough winter. We lost out on another house we were in love with, we’ve had car issues, I found out my foot has been broken for two years and I’ve just been walking on it like no big deal, and I was diagnosed with MS.

Let’s rewind a bit…

In March of 2010 I started having trouble breathing. I felt like I was never getting a full enough breath or getting enough oxygen. The doctors told me it was anxiety, once even prescribed Ativan. I knew it wasn’t, but tried to ignore it as best I could. A week or so later, I started losing feeling in my feet. I assumed it was a pinched nerve or bulging disk and spent a few hundred bucks on massages. They didn’t help, and the numbness and pins and needles feeling spread up my legs and torso, to my arms, and hands. It was so bad, I was unable to type on the keyboard and couldn’t sense temperatures.  Again, multiple doctors told me it was anxiety. Finally, in June, I met with one doctor who said “Presenting with these symptoms at your age (27) is textbook Multiple Sclerosis.” He immediately sent me for hours, and hours of MRIs on my brain and spine, where a 1.5cm (half inch) mass was found in my spinal cord between C2 and C3. A really, really crappy place to have a mass.

MRI result

Here I was, engaged, planning a wedding and life with my husband, thinking about our future family and suddenly my world was crashing down around me.

I met with a neurologist who said “I don’t think this is MS, and even if it is, I can’t diagnose you with it since you’ve only had one event (flare)” She sent me to a Neuro oncologist because she felt it was probably a tumor.  He looked at it, sent me for more MRIs, CT, more blood work than you can imagine, and did a spinal tap (which was absolutely horrible, made worse by the fact that I have “unique spinal anatomy.” Because, of course I do…) My spinal fluid came back pristine, and slowly my symptoms subsided. My neuro oncologist brought my films to the Tumor Board (a group of super smart oncologists who look at tumors and try to determine what they are and how to best treat them. They didn’t have any suggestions other than “Well, tumors don’t just shrink on their own, and if the symptoms are getting better, it must be shrinking.” But maybe it’s an astrocytoma or a glioma, or some other type of scary tumor that just isn’t malignant…yet. So, the plan was to watch and wait. They wanted me to get another MRI in 6 months, and then every year. But I didn’t have insurance and was no longer eligible for the Hospital’s “charity” so, since I didn’t have symptoms, I just waited.  As soon as I had insurance again, I made appointments but then COVID came along and wrecked those plans, too.

Finally, in January of this year, I was able to get a spinal MRI. The spinal lesion that had been a constant worry for over decade was smaller. Half the size. This was great news, but I was still worried about my brain.  Over the past couple years I’ve had vertigo, headaches, hearing issues, vision issues, fatigue, and other symptoms that had always been chalked up to my Hashimoto’s hypothyroidism, anxiety, allergies, and just being a busy mom. But I knew something wasn’t right, and having one lesion that was never diagnosed has always left me worried that another could appear. Fortunately, my amazing doctor listened to me, and sent me for a brain MRI when I requested it.

The results came through my portal the next morning. The news wasn’t good.

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Lesions in my brain, one prominent, two very tiny, “Likely represent demyelinating lesions.”  After a call with my doctor, he referred me to the MS Center at our local hospital. I met with my new neurology team, who reviewed my MRI results with me and determined, without a doubt that I have MS.  Fortunately, my MS is “mild” at this point. It’s not aggressive, and it’s a good sign that I have gone so long without any symptoms. He told me that he rarely sees patients at this stage of disease because most people wouldn’t discover it at the point. Most folks come in having lost vision, or experiencing sudden paralysis or at least sever weakness. However, MS is an incredibly unpredictable disease, and there is no way of knowing if I’ll continue to have little to no progression, or if everything will speed up. I was given options. I could wait it out, see if I have another flare or more lesions show on my next MRI a year from now. I could go the conservative route and try some of the less intense medications. Or, I could treat it aggressively with the top tier meds. My doctor said “It all depends on what level of disability you’re comfortable risking. ”

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The answer to that is none. So, I have decided to treat this aggressively. I’ll start meds as soon as possible. It will be a monthly infusion, that will hopefully prevent future lesions. There are possible side effects, some boring, some scary, but the (very low) risk is worth the reward.

So that’s a lot of words to say, I’m really scared and sad and angry, but also hopeful. Honestly, it’s not the physical symptoms I’m most concerned about. Could I end up needing a cane or a wheelchair? Yup, I could. I’m mostly ok with that. It’s to potential cognitive issues that scare me the most. Like I said, the disease is completely unpredictable, I have no idea what will happen next. But there is some relief that comes with finally having a diagnosis. When you have a mass of unknown origin in your body, you never stop thinking about it. For years I was worried about”What ifs” What if it IS a tumor that suddenly turns malignant? What if it starts growing again and leaves me paralyzed or dead? What if more tumors grow? What if it IS MS? Well, now I know and we can treat it. Now I know WHY I feel the way I do and why my body doesn’t always work the way I want it to. Now I know it’s not in my head.  (Even though it is literally in. my. head.)

I have to say how incredibly fortunate I am to live in a place with such incredible medical care. I am grateful to have an MS Clinic here where I have access to the most knowledgable doctors, and a team of other health care workers like Occupational and Physical Therapists on-site. I am also feel so grateful that I have supportive friends, coworkers and bosses, and of course my incredible family.

So I will learn to live with this, and fight it when I need to fight. I’ll likely write a lot more about this as I go through it. I’ve never hidden any of my life’s challenges, and feel that my journey may help others in the future. Like my adoption story and postpartum journey, if I can help one person, it will be worth it.

Thanks for reading, and please don’t treat me any differently. Ask questions if you have them, don’t make assumptions. I’m still the same Sarah.

Here’s some info for family (and friends) of someone newly diagnosed with MS

 

It’s Not a Tumor. Or Maybe It is.

So, Ive never written about this in any sort of detail before, and honestly, I haven’t really discussed it with many people. But I’m trying to be healthier, more active, and a better role model for my daughter, so this part of my life kind of needs to get out in the open, since it has an impact on all of that.

There are many things that a 27 year old doesn’t want to hear from their doctor. “It’s gangrenous.” “That’s a whole lot of blood” “You have a tumor” “You have MS”

Those last two? The tumor thing and the MS thing? I was told both in March 2010. Happy freakin’ birthday!!

So, let me start from the beginning…

In February I started having trouble breathing. It happened mostly at night, but occurred throughout the day where I felt like I couldn’t catch my breath or that I wasn’t taking in enough oxygen when I would inhale. I saw a doctor twice, who gave me breathing treatments and steroids that did nothing. He decided that I was just an overly emotional female, and clearly it was “just anxiety” gave me Ativan (which I never took because I knew the guy was wrong, and who the hell wants to take Ativan?? I need to BREATH not be unconscious for hours) I cried, every night. I felt like doctors had failed me and nobody would listen. Then things got worse.

I woke up one morning with pins and needles in my feet. I thought I must have slept wrong and that it would go away after walking around for a bit. It didn’t. In fact, it got progressively worse as the day went on. Within 3 days my feet, my legs, my torso, my arms and my hands were numb and tingling. The only parts of my body that weren’t numb, were my neck and my face. I couldn’t type on the computer at work anymore because I couldn’t feel the keyboard. I thought it HAD to be a pinched nerve in my neck or something. So I went to have a massage. I kept telling the therapist to work deeper, and use more pressure. I ended up with bruises all over my back (my fault, not his) because he was working incredibly deep, but I couldn’t feel it. There was no change. I saw two massage therapists and a cranial-sacral therapist in 3 days. No change. So I went to my doctor.

Again, I wasn’t listened to, and my symptoms were blown off and I was told that it was Raynaud’s. A syndrome which I DO have, but the symptoms I presented with were very, VERY different. Raynaud’s causes my feet to turn purple/blue when they are COLD. My feet (and ya know, the rest of my body) was numb ALL THE TIME and it was worse when I was hot.

I made another appointment with a different doctor in the practice.

I told him my symptoms and his immediate response was “When a woman of your age presents with these symptoms, we automatically think MS.” He said ti was a pretty clear diagnosis, and never should have been missed. He arranged for me to meet with a Neurologist that he knew, a few days later.

I went and saw the neurologist, who spent over an hour asking me questions, poking and prodding, and taking notes. In the end she sent me away, and said she’d call me in a few days.

I got the phone call the moment I arrives back in our driveway. She wanted to call to tell me that she wasn’t sure if it was MS, she wasn’t sure what it was but she was referring me to a Neuro-Oncologist. She needed me to have more tests done to rule out cancer (or rule it in) and that she really couldn’t give me a diagnosis of MS until I had a second “flare” One isn’t enough.

And then I lost it. I told Dave he didn’t have to stay with me. I didn’t want him to be “stuck” with a girl who could be sick or disabled or dead. We had just run our first 5k together (A great idea when your have minimal feeling in your feet and can’t breathe) We were planning our wedding, we were planning our future, and I was being told that I needed to see an oncologist because I might have cancer? Or that maybe I still had MS. And that my future might not be as long as I had expected.

Obviously he didn’t leave. He was amazing and supportive and….perfect. He stayed.  Met with a future the held uncertainty for him, he stayed. Because he’s amazing.

So we went to the neuro-oncologsit. I had over ten hours of MRIs. From the base of my spine to my brain. It was scanned, rescanned, scanned with dye, scanned without. I think I was in every MRI machine that Rhode Island Hospital has. I had CT scans and PET scans. I had my vision tested and met with so many different types of neuro specialists. They found a Lesion or a tumor in my spine between my 2nd and 3rd cervical vertebrae. It definitely accounted for the numbness and also for my difficulty breathing, since being that high in the spine would affect my diaphragm. The doctor needed to run more tests, at this point it could still be MS or it could be a tumor.

I had a spinal tap that took over an our, and over 20 “sticks” he hit my vertebrae more times than I could count(apparently I have “Unique anatomy” and he couldn’t get in to the proper space) He wanted to stop, I told him to just try one more time, and finally, he got it. Spinal fluid was all clear. No signs of MS or signs of cancerous cells *phew* right? No. Because the only other thing left to do was biopsy the Mass-lesion-tumor-alien implant and due to the location…INSIDE my spinal cord, that wasn’t an option. Neither was removal.

SO what do you do when nothing can be done?

You wait.

My doctor took my case to the tumor board at Rhode Island Hospital, where they decided since my symptoms were improving (my numbness was dissipating) and the “mass” looked to be stable (not growing) and my spinal fluid was clear, that we could watch and wait.

(When I find my scans, I’ll post a picture of my little spinal invader, here)

So the plan was to check it in 6 months, and then a year. But my 6 month appointment got canceled, and then rescheduled to the week before our wedding. I wasn’t going to have the MRI and then worry through our wedding about the results so we put it off. And then I went and got pregnant. and I wasn’t about to have a 4 hour MRI during pregnancy. And then I had Avery, and now it’s been way too long. There were other issues involved, like insurance, but I have that now.

So here I am, I don’t have any excuses, I need to go back and make sure everything is still “ok” in there. While I have been relatively symptom free for this whole time, I still have pretty significant numbness in my finger tips. I’ve gotten used to it. The symptoms are worse when I am hot, or my blood is pumping. For example, when I work out, my hands get very numb. My feet and legs also get the “pins and needles” feeling, and I still have a hard time pulling in enough oxygen. I still have LLhermitte’s sign which still catches me off guard every time it happens.

I didn’t write this because I want anyone to worry or feel sorry for me. Is it scary?  Yeah, it is. I think about it daily, and every cough, every ache, every-everything that happens with my body makes me think “Oh God, it’s cancer…I know it”  I’m not a “victim” of anything. There are people who are much, much worse.  But I’m writing this so that I am accountable.

I need to take care of myself. I need to do this for Dave and for Avery. I need to be here and I can’t sit around waiting for something to happen that forces me to get it checked.

So, I will be making an appointment THIS WEEK, and I will get back on track with my health.