Tag: Diagnosis

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Smoldering MS and a 2 week flare

“Smoldering MS” refers to a chronic, underlying disease process that can cause gradual decline in neurological function, even in the absence of active relapses or new lesions on MRI scans. 

Going through an MS flare that has lasted as long as this one has, has completed turned my life upside down. Starting February 24th, I became unsteady when moving my head from side to side. My equilibrium was off. Then I woke up Monday with severe fatigue, some of the worst I’ve ever had.

It has been now 15+ days of waking up in a body that doesn’t feel like mine. Part of it is a familiar feeling- and now at least part of my day resembles a typical flare day, but something has just been different. 

That Monday that my symptoms started I immediately messaged my neurologist on MyChart. I told them I feel uneasy when I move. I cant drive. I need to sit still or I’m dizzy, I have had to catch myself when walking multiple times. My fatigue is the worst it has ever been and my brain fog is preventing me from doing anything productive. He said the symptoms sound typical of MS, and that if I became really uncomfortable I should go to the ER. I spoke with his nurse and he was just as dismissive. I was told nothing could be done unless I had new MRIs that showed new lesions or a change in my neurological exam. I understood nothing could be done unless I was seen by a dr. Im not expecting to be blindly treated, but I felt that someone from the neuro department should be able to see a patient in this condition in an urgent manner. I felt abandoned and unsupported. Going through a frightening increase of symptoms and being told “go to the ER because I can’t see you until your appointment April 29th” was so frustrating. That would be 2 whole months after symptoms started.

I had enough of feeling so off and having no solutions, so I went to the ER hoping they could help- from my research I was hoping steroids to help with a likely increase in inflammation. During my overnight at the ER I was evaluated for vestibular symptoms. My neurological exam showed changes in my balance that I didn’t have before and more significant nystagmus (something they have seen in the past). The ER doctor was kind and very supportive. He was confident that there was something vestibular going on. He had me stay overnight until the MRI techs came in so they could get a look at my brain. 

Results came back and my brain MRI was stable. It was really only mildly comforting. My diagnosing neurologist has always been a firm believer that the MRI doesn’t show the full picture and doesn’t fully correlate to disability. He was constantly noting new research that supports this thought.

My overnight in the ER was in and of itself an MS trigger. Three hours of sleep in a high stress, overstimulating environment was a nightmare. Because I almost always have UTI symptoms, they decided to just treat a UTI just in case that caused my neurological symptoms. Infections can cause neurological symptoms, usually in the elderly, so why not give it a try. Basically I just put antibiotics into my body that I didn’t actually need, which is always a crappy feeling.

After 2 weeks of losing my mind- I sent a message in the portal to another neurologist that I had seen previously for my migraines. He left the practice but a new neurologist at the Brigham MS Center was able to see me immediately based on my symptoms. It was a 2 hour appointment with a thorough evaluation. This is what was decided:

  • I likely have something they are calling “Smoldering MS”. Smoldering MS is micro neuro-inflammation that can’t be seen on an MRI. It’s thought to be all over the brain, and there are no scans that can see it. It’s “subtle, ongoing damage that isn’t related to a relapse”. It is commonly described as having intense fatigue, brain fog, all over physical symptoms like tingling or tightness. This is unlike a regular MS relapse, it is not related to one side of the body or one limb with a specific lesion that can be pinpointed on the brain or spine.
  • My inflammation markers are high- we don’t know why, that is more common in other autoimmune diseases, not MS.
  • I could have vestibular inflammation that is causing the dizziness/disequilibrium I am getting.

Next Steps

  • 3 days of high dose steroid infusions. 
  • Changing my fatigue medication I’ve been on for 4+ years to try a new one. This is probably the scariest, biggest change. I am trusting in my new MS team that this is the right move, but getting different feedback from different neurologists regarding a medication is SO confusing and has me very uneasy.
  • I’m doing full cognitive testing to come up with a baseline to be used to track if I am becoming more cognitively disabled over time. This is more like, will I start to struggle with specific neurological tasks, like long term memory. It sounds scary, like will I suddenly be considered to have an intellectual disability, but that is not the case. I just might need to use more resources to help me function in the future.
  • Try to get back to baseline.
  • Hope and pray these next steps all help. 

I am waking up everyday anxious. Two weeks+ like this triggers all sorts of emotions. It makes me want to take control of my life, but I have no idea where to start. I want to get into better routines to support better habits. I want to get back to eating right for my inflammation. I want to reduce my stress. But the reality is- it’s impossible to do all that with the symptoms I have. And the big one- I need to be able to do my job! Will I be able to return to teaching special ed? If not, I need another type of job because I need health insurance. I need to be able to pay for the things I need (and truthfully, want) and pay to see the drs I need to see and pay to get the medications I need to take. Soooooo how do I fix my life and make all of these adjustments when everything is completely up in the air? If anyone knows magic it would be really useful right now. Here is hoping that a week or so from now I have at least some things figured out. For now- I will be living in the rush of steroid symptoms until they start to help my MS symptoms. And those steroid side effects…. man that is a whole other blog post…

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My Diagnosis

Having MS Sucks

I’ve never been athletic. If it involved any sort of hand eye coordination, I sucked at it. But growing up I could hang. I could “participate” in sports and run around with all my friends. In high school, I could keep up during practice (I was the slowest, but still) and then go to dance class for 2 hours no problem. In college, I could run miles every day to and from class (since i was almost always late),  walk around Boston at all hours of the night, and keep up with my friends on the weekends.

Then I graduated… and slowly things started getting harder. Walking from the parking garage to the building I worked in was exhausting. I’d be out of breath for the first several minutes of the work day. When I would get hot at work, I couldn’t cool down. My face would get so red it felt like it was on fire. I went from being someone who never napped, to taking 2 hour naps every day after work until dinner.

I thought maybe I was just getting lazier, or I wasn’t in “shape”. I thought it could maybe be my mental health, and I felt fatigued because I was anxious or depressed. But it never made sense since my anxiety and depression was more under control than ever. I went to the doctor in 2018, and she thought maybe I just needed to move more, get into a good exercise routine, and she diagnosed me with heat intolerance because my symptoms matched it. But I was told I could probably deal with it and that once I got into better shape I’d improve and the heat and movement wouldn’t be so hard.

But things didn’t improve. I felt worse with everything I did and felt worse about myself because of it. I couldn’t understand why everything was so hard for me. I gained more weight, started feeling less motivated, and was so unhappy with how things were going for me.

Flash forward to this February. I started to realize my vision was getting blurry in my right eye after I got out of the shower or when I was walking my dog. In March, I completely lost my sight in my right eye during a dance workout. Then COVID hit, and like most I decided to start exercising more to try and stay busy. With the increase in exercise came more issues with my vision.

Now if you know me, you know I am a complainer. As soon as something hurts or feels off, I tell my family or my friends. But this time was different. It was like I had a gut feeling this was more serious.

So I kept it to myself.

I’d mentioned it to friends occasionally, but just thought it was related to the heat intolerance. But when it got bad I finally told my parents and my sister and after some convincing, I went to Mass Eye and Ear. After some tests I was diagnosed with Optic Neuritis, a swelling of my optic nerve, which can cause vision changes.

I was told that having Optic Neuritis gives me a 50% chance of having MS. I felt pretty good about my odds. Then my neurologist suggested an MRI. They found lesions on my brain, and the percentage moved to 75% likely. I was less optimistic. Then they suggested a spinal tap, and my spinal fluid showed differences found in those with MS. So the 75% became 100%, and I was diagnosed with relapsing-remitting Multiple Sclerosis. The most common kind. But the interesting thing about MS, is even though it effects nearly 2.5 million people world wide, they still don’t know much about it. They cant tell me if I will continue to have mild symptoms off and on for the rest of my life, or if I could develop progressive MS and have lasting symptoms or a physical disability.

So the reason I’m writing this is to get all the chaos in my head down in writing. As my About Me says, here I am, just trying to make sense of it all.