First, please know — you are absolutely not being vain. You are grieving, navigating a complex condition, and trying to feel like yourself again. That is completely human and valid.
There is a lot to unpack here, so let's take it piece by piece. On pyridostigmine stopping work and incontinence
The incontinence you're Show Full Answer
First, please know — you are absolutely not being vain. You are grieving, navigating a complex condition, and trying to feel like yourself again. That is completely human and valid.
There is a lot to unpack here, so let's take it piece by piece. On pyridostigmine stopping work and incontinence
The incontinence you're experiencing is a recognized side effect of pyridostigmine — it affects bladder muscles. The fact that it's also becoming less effective is worth a serious conversation with a new neurologist, especially as you're moving to California anyway.
There *are* other treatment options beyond pyridostigmine, including:
- Corticosteroids like prednisone to calm the immune system
- Immunosuppressants like azathioprine or mycophenolate mofetil
- Newer targeted medications approved in recent years
- IVIg therapy for symptom management On the conflicting advice about surgery
Getting two different opinions from two specialists is genuinely confusing and frustrating. A second neurologist opinion — particularly a neuromuscular specialist — when you relocate could bring real clarity. A fresh set of expert eyes (no pun intended) on your full picture may open doors your current team hasn't explored. On the eyelid situation and consulting a plastic surgeon
Before pursuing cosmetic surgery, it's really important to know that ptosis in MG is caused by muscle weakness, not structural eyelid issues. A plastic surgeon may not fully understand how MG affects surgical outcomes, and results could be unpredictable.
Some practical options that help in the meantime include:
- Eyelid crutches — small devices that attach to glasses to hold lids open
- Eyelid tape — specially designed to lift lids without irritating skin
- Cold compresses — an MGteam member shared that 15 minutes of cold on tired eyes provided noticeable relief
- Prism glasses — another MGteam member had great success with prisms fitted by their eye doctor for vision issues
These won't replace treatment, but they can help you feel more like yourself while you find the right path forward. One last thing
You've lost your husband, you're moving across the country, and you're managing a condition that's not being well-controlled right now. That is an enormous amount to carry. Being your own advocate — which you clearly are — and seeking better care is exactly the right instinct. California will be a fresh start, and finding a new neuromuscular specialist there could genuinely change things for you.
You deserve to feel well *and* feel good about how you look. Those two things are not mutually exclusive.
October 3
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