Yesterday, I walked into my neurology appointment carrying a list of questions.
Questions about my thymus gland.
Questions about the extreme fatigue I experience during the four weeks off Rystiggo.
Questions about whether there were additional treatment options available to help me regain some consistency in my daily life.
As anyone living with a chronic illness knows, not every appointment brings life-changing news. Sometimes the biggest outcome is simply gaining clarity.
And this appointment provided exactly that.
The Thymectomy Question
One of the topics I wanted to discuss was whether removing my thymus gland could help improve my Myasthenia Gravis.
Over the past several weeks, I had spent time researching thymectomy, learning about the potential benefits, and wondering whether it might be an option worth pursuing.
The answer, at least for me, was clear.
Because I have MuSK-positive Myasthenia Gravis, my neurologist confirmed that a thymectomy is not expected to be beneficial.
While thymus removal can be helpful for many patients with acetylcholine receptor (AChR) positive MG, the same benefit has not been demonstrated in patients with MuSK-positive disease.
In other words, surgery would expose me to risk without offering a meaningful likelihood of improving my condition.
Was it the answer I hoped for?
Maybe.
Maybe not.
But it was an answer.
And sometimes clarity is just as valuable as hope.
The Fatigue Conversation
The second topic was one that has been affecting my quality of life far more than most people realize.
The fatigue.
Not everyday tiredness.
Not the kind of exhaustion that improves after a good night’s sleep.
The kind of fatigue that settles deep into your muscles and makes even simple tasks feel overwhelming.
The fatigue that appears during the four weeks between Rystiggo treatment cycles.
While my breathing has improved significantly since restarting treatment, the fatigue remains one of the most challenging symptoms I face.
For months, I have noticed a pattern.
The further I get from my last infusion, the harder it becomes to maintain the same level of energy and function.
The fatigue isn’t in my head.
It isn’t laziness.
And it isn’t simply getting older.
It is part of living with Myasthenia Gravis.
What Happens Next?
While thymectomy is no longer part of the discussion, we did discuss adjustments that may help manage my symptoms more effectively.
The first option is modifying my treatment schedule.
Currently, I receive six weeks of Rystiggo followed by four weeks off treatment.
My neurologist indicated that we may be able to shorten the off-treatment period from four weeks to three weeks.
That may not sound like a significant change.
But for someone who feels the impact of every week without treatment, reducing the gap by even seven days could make a meaningful difference.
The second option is utilizing Mestinon on days when my energy levels are particularly low.
While it is not a cure and does not stop the autoimmune process itself, it may provide additional symptom relief during periods when fatigue and weakness become more noticeable.
At this point, these are the tools available to me.
And honestly, that is sometimes what living with chronic illness looks like.
Not dramatic breakthroughs.
Not miracle cures.
Just small adjustments that help make the difficult days a little more manageable.
Learning to Celebrate Answers
One lesson I continue to learn throughout this journey is that every appointment does not need to end with a major treatment change to be considered successful.
Sometimes success is simply having your concerns heard.
Sometimes it is ruling out an option that is unlikely to help.
Sometimes it is leaving with a better understanding of your disease than you had when you arrived.
Yesterday, I received answers.
I learned that thymectomy is not the right path for my specific type of MG.
I learned there may be flexibility in my treatment schedule.
And I learned that the fatigue I experience deserves attention and management, not dismissal.
Would I have loved a simple solution?
Of course.
But chronic illness rarely operates in simple solutions.
Instead, it teaches us to celebrate progress in all its forms—even when that progress comes in the form of a conversation, a new plan, or a single week less between treatments.
For now, I will continue moving forward one infusion, one adjustment, and one day at a time.
Because while I may not have found the answer I expected, I did find something equally important:
A path forward.
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 lesson at a time.
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