Tag: MS

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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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MS update

Dealing with my MS has been exhausting lately. I’m frustrated that my body can’t do what it used to. I’m stressed about the cost of being chronically ill. I’m sad I’m missing out on living the life I want to live.

In August, I started my treatment. It’s an infusion therapy that takes about 5 hours from start to finish. First there are the pre-meds (steroids and allergy meds), then the disease modifying therapy, and then the hour of saline and observation. The science behind the treatment is well beyond my understanding, but basically, it attacks a protein on your B cells. If left alone, that protein damages nerves, resulting in MS symptoms. 

The whole thing was around a 3 week process. Two infusions, the two week wait in between, and the post infusion side effects. Moving forward,  ill have one infusion every 6 months for the foreseeable future. 

My MS is considered “unremarkable”. Clinically, thats true. But living with it every day,  is anything but “unremarkable”. It’s a constant internal conflict of feeling grateful I don’t have it worse, and feeling frustrated that i have to have it at all. While my clinical presentation may be minor, my symptoms interrupt my life daily. 

MS has required me to change my plans. And that sucks. I want to be a lead teacher, running my own classroom for students with significant needs. I wanted to be able to finish my second grad program. I wanted to stay in Austin. I want to be able to work all week and enjoy the weekends without worrying that my weekend choices will prevent me from being effective at work the next week. I want to be able to do more than work on weekdays, to come home and play with Winston and take him for walks and work on his training. But I can’t do any of that. And it really really sucks. 

So for now, I follow my new plan. Im back in Boston. I’m living at home so I have help with Winston…and having someone to help make me meals when I’m too tired to function is a major plus. I’m co teaching at a private school for young students with social and emotional challenges. Im no longer in grad school. And I’m resting. Im taking time to adjust to the new normal. Im focusing on ways to fight my fatigue, like working with a trainer and nutritionist. And I’m adjusting. 

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Winston the Service Dog

A few months ago I made a decision that was met with a lot of judgement. I bought a puppy. I was well aware of the work I would have to put in, that it would be hard to do on my own, physically demanding, and frustrating to get through training. The people in my life weren’t quite sure I understood the responsibility. When I told 90% of people about this choice, it was met with “I’m not sure you should take that on” and “that seems like a big responsibility with everyone else you have to deal with”. But I did it anyways. And if you saw Winston and I together you would agree it was the best decision I could have made.

A wrote a note for a blog post I meant to write my first week after getting him, but MS and dog parenting and life….

“I am confident I was so right with my decision.  Little Winston is feisty, and A LOT of work. Puppies are exhausting and constantly need something from you. Being “on” all day every day for a week has taken a toll on my body. I’m in more pain and I had 3 migraines in 3 days. But with those negatives has come a lot more positives. He has put me on a schedule. Gotten me out of bed at a normal time and into bed at a decent hour. He thrives off of a routine, so I need to start each day organized with what he needs and when he will need it. He brings me so much joy my heart can hardly stand it. Instead of listening to everyone I reminded myself that I know what choices are best for me and my health, and I don’t care what anyone else thinks”

I’ve had Winston now for 6 months and everyday I am reminded how lucky I am to have him.He is so smart. He knows when I am not feeling well and need to rest, and he’s right there with me. He also knows when I am just being lazy, and he keeps me moving when I need it. Getting me on a schedule and into a routine helped me through a difficult time, and I’m back to working and living a more normal life than I was before I got him. He continues to give me a reason outside of myself to get out of bed each morning and push through the hard MS days. Instead of focusing on all of my medical needs and appointments, I have another living thing I need to take care of, and that has given me a much needed break from being a full time patient. He is my best friend and keeps me company when I am too fatigued to leave the house for an entire weekend, but because I need to take him outside and feed him, and keep him busy, I am able to keep distracted and in a better space mentally when my body is physically causing me challenges. He passed his obedience training quickly and is on his way to pass his public access test after his first training session. That means that within a few weeks he will be my service dog. 

I got Winston with the plan to train him to be a service dog. MS is made worse with stress. I knew from growing up with a dog that they make stressful situations so much better. Also, like a lot of people, I suffer from general anxiety. Along with anxiety, I have an adjustment disorder after experiencing trauma. And with a diagnosis of MS you are much more likely to experience clinical depression, as you are with many other neuroinflamatory diseases. Having Winston become my service dog can only improve my quality of life now and In whatever challenges I may I face in the years to come with my diagnosis. 

When I explain that my adorable, teddy bear-like puppy is going to be my service animal people assume he cant be a real service animal or he’ll be the same thing as an ESA. While he is an emotional support animal naturally, he is going through full service dog training, which emotional support animals do not do. Winston will need to prove he can navigate public areas with confidence and discipline. He will need to learn tasks, like watching my back, applying deep pressure by laying on my chest, and jumping up on my legs when I’m anxious in public. He will also go through training to be a therapy animal, and will give comfort and love to others, not just me. So far he is learning so quickly and is a natural. I’m so proud of him! Follow along with Winston’s life and training on his instagram- winston_the_sheepiedood