Living with Myasthenia Gravis often feels like navigating uncharted territory.
Just when I think I have a handle on my symptoms, a new question emerges. A new decision needs to be made. A new conversation with my neurologist takes center stage.
As I prepare for my appointment with my neurologist tomorrow, there are two topics weighing heavily on my mind:
Should I consider having my thymus gland removed?
And
Why does the fatigue become so overwhelming during the four weeks I am off Rystiggo?
Neither question comes with a simple answer, but both are important conversations for anyone living with Myasthenia Gravis.
Understanding the Thymus Gland
The thymus gland is part of the immune system and sits behind the breastbone. In many people with Myasthenia Gravis, particularly those who are acetylcholine receptor (AChR) antibody positive, the thymus is believed to play a role in the autoimmune attack that causes muscle weakness.
Because of this, some patients undergo a procedure called a thymectomy, which is the surgical removal of the thymus gland.
For certain individuals, thymectomy can reduce symptoms, decrease medication requirements, and even increase the likelihood of long-term remission.
But my situation is a little different.
I have MuSK-positive Myasthenia Gravis.
Unlike AChR-positive MG, the benefits of thymectomy in MuSK-positive MG are much less clear. In fact, many specialists do not routinely recommend thymectomy for MuSK-positive patients unless a thymoma (tumor of the thymus gland) is present.
At this point, I have never had a CT scan or MRI of my chest to evaluate my thymus gland.
That raises an important question:
Should I have imaging performed before deciding whether thymectomy is even worth considering?
It’s a conversation I plan to have with my neurologist tomorrow.
Weighing the Pros and Cons
Like many decisions involving chronic illness, there is no universal right answer.
Potential Pros of Thymectomy
- Possible reduction in MG symptoms
- Potential decrease in medication requirements
- Removal of a thymoma if one is present
- Long-term disease stabilization in some patients
Potential Cons of Thymectomy
- Major surgery with associated risks
- Uncertain benefits for MuSK-positive MG
- Potential respiratory complications during recovery
- No guarantee of symptom improvement
- Extended recovery time
Because my MG has involved significant respiratory symptoms, diaphragm weakness, vocal cord involvement, and periods where even breathing felt like work, the decision becomes even more complex.
Every potential benefit must be weighed against the possibility of worsening respiratory function during recovery.
The Four Weeks Off Rystiggo
If there is one thing my journey has taught me, it is that treatment effectiveness often becomes most obvious when treatment is unavailable.
I experienced this firsthand during the seven-week interruption in my Rystiggo treatments caused by insurance issues.
The difference was impossible to ignore.
Breathing became harder.
Fatigue became overwhelming.
Daily activities required significantly more effort.
The experience reinforced something I had already suspected:
Rystiggo is not optional for me.
When treatment resumed, I experienced significant improvement in my breathing. The constant struggle for air eased. Activities that had become exhausting became manageable again. For the first time in weeks, I felt like I was getting a part of my life back.
But while Rystiggo has been life-changing for me, there is still one issue that continues to concern me.
During the scheduled four weeks off treatment between cycles, the fatigue can become extreme.
Not ordinary tiredness.
Not the kind of fatigue that improves with a good night’s sleep.
The kind of fatigue that settles into your muscles, your body, and your mind.
The kind that makes simple tasks feel overwhelming.
The kind that leaves you questioning whether you’re exhausted from life, from chronic illness, or from the treatment cycle itself.
As someone living with both Myasthenia Gravis and Crohn’s Disease, fatigue is not a new symptom. But this feels different.
It feels deeper.
Heavier.
More consuming.
And it is something I plan to discuss openly with my neurologist.
Questions for My Neurologist
At tomorrow’s appointment, I plan to ask:
- Should I have a chest CT scan or MRI to evaluate my thymus gland?
- Given that I have MuSK-positive MG, would thymectomy provide any meaningful benefit?
- How would my history of respiratory involvement affect surgical risks?
- Is the extreme fatigue during the four-week break from Rystiggo expected?
- Are there treatment adjustments that could help reduce symptom recurrence between cycles?
- Should additional testing be performed to better understand my fatigue?
- Is there a connection between my fatigue and the timing of my treatment cycle?
Living in the Gray Areas
One of the hardest parts of living with a rare disease is learning to live in the gray areas.
There are no guarantees.
No universal treatment plans.
No roadmap that fits every patient.
Instead, there are conversations.
Questions.
Research.
Second opinions.
And a constant effort to balance risks against potential rewards.
As I prepare for my appointment with my neurologist tomorrow, I am reminded that being a patient often means becoming your own advocate.
Tomorrow, I will walk into that office with questions about my thymus gland, concerns about the extreme fatigue I experience during the four weeks off Rystiggo, and a determination to better understand what the future of my treatment may look like.
I want to know whether imaging of my thymus gland should be part of my care plan.
I want to better understand whether a thymectomy is something worth considering as a MuSK-positive MG patient.
Most importantly, I want to discuss the reality that while Rystiggo has significantly improved my breathing and quality of life, the scheduled four weeks off treatment can leave me feeling completely drained.
The fatigue I experience during that time is difficult to explain to someone who has never lived with Myasthenia Gravis.
It is more than being tired.
It is the feeling that every task requires more energy than I have available.
It is waking up exhausted, struggling to make it through the day, and wondering how much of my life is being dictated by the treatment cycle itself.
Perhaps the fatigue is expected.
Perhaps there are adjustments that can be made.
Or perhaps there are additional questions we need to be asking.
That is what tomorrow’s appointment is for.
For now, I don’t have all the answers.
But tomorrow, I hope to leave with a few more than I have today.
Until then, I will continue doing what so many of us living with chronic illness do every day—asking questions, advocating for myself, and refusing to settle for “just live with it” when there may be options worth exploring.
Because sometimes progress doesn’t begin with an answer.
Sometimes it begins with a question asked at the right appointment.
Living with one autoimmune disease is challenging. Living with two requires resilience. Welcome to The Dual Diagnosis Diaries, where I share the realities of navigating life with Crohn’s Disease and Myasthenia Gravis—one appointment, one treatment, and one question at a time.
The Dual Diagnosis Diaries | Kia’s Journey 💜 
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