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My doctor said I probably have it given my response to pyridostigmine for my eye symptoms (almost total resolution). My RNS and bloodwork have been normal but I do experience eyelid drooping, double vision, muscle weakness, and fatigue. Im confused and frustrated at this point. Thanks everyone!

August 18
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A MGteam Member

Oh my! It certainly is a bumpy ride. Thanks for the support ❤️

August 18
A MGteam Member

I had a muscle biopsy after my other tests were negative. My Dr. asked if I’d been tested for MG my first visit. I do have MS but my droopy eye is so noticeable! He asked if I would put a cold washcloth over my eyes the next morning and if they opened all the way I should be treated. Sure enough, they were both wide open and test after test was negative. It’s a tough disease to diagnose.
I think it will take a celebrity to make people, doctors, E.R.’s more aware of the various problems. Only they could raise the money for R &D, until then it’s a mystery.

August 18
MGteam

That confusion and frustration is completely understandable — but you are definitely not alone in this experience. An MGteam member shared something very similar: "None of my bloodwork was positive, but I was diagnosed on the basis of symptoms, nerve conduction studies, and response to pyridostigmine (Mestinon)."

Negative Show Full Answer

That confusion and frustration is completely understandable — but you are definitely not alone in this experience. An MGteam member shared something very similar: "None of my bloodwork was positive, but I was diagnosed on the basis of symptoms, nerve conduction studies, and response to pyridostigmine (Mestinon)."

Negative antibody tests don't automatically rule out MG. Between 6% and 10% of people with MG test negative for both the main antibodies (AChR and MuSK). This is called seronegative MG. People with seronegative MG are actually more likely to experience ocular MG — meaning symptoms mainly affecting the eyes — which lines up with what you're describing.

Your symptoms are very consistent with MG:
- Eyelid drooping (ptosis)
- Double vision
- Muscle weakness
- Fatigue The fact that pyridostigmine gave you almost total resolution of eye symptoms is actually a meaningful diagnostic clue that doctors take seriously.

There are also newer, more precise tests becoming available that can detect antibodies that older tests miss. It may be worth asking your neurologist about additional testing, such as anti-LRP4 antibodies or a cell-based assay test.

August 18

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Winston Salem, NC