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Ocular Myotonia VS Myasthenia Gravis

Posted by nancybe @nancybe, Apr 5, 2022

Has anyone been initially diagnose with CIDP (ocular Myotonia) then another neurologist diagnoses it as Myasthenia Gravis? Husbands symptoms all eye movement related and all scans, etc have been negative. Only lab that has been positive is Voltage Gated Potassium Chanel. Doctors will be discussing and go for next IVIG this week. Has been receiving IVIG but progress stopped in last three months.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 6, 2022

@nancybe Well, i cant really answer your specific questions, but i can ask a few. Are you seeing doctors at a large medical center or university hospital? I’m also wondering if you have seen any ophthalmologists who specialize in MG and ocular myotonia.
https://www.aao.org/eye-health/diseases/what-is-myasthenia-gravis
Just ask your doctors for a 2nd opinion at a university hospital. My care (for a different autoimmune disease) is managed by doctors 1 hour away but the treatments are done locally. (I mention all this because I couldn’t find any discussions that fit your topic)
How long has your husband been dealing with all this? Are you 2 coping well with the changes?

REPLY
1 reply
nancybe | @nancybe | Apr 9, 2022
In reply to @becsbuddy "@nancybe Well, i cant really answer your specific questions, but i can ask a few. Are..." + (show)
@becsbuddy

@nancybe Well, i cant really answer your specific questions, but i can ask a few. Are you seeing doctors at a large medical center or university hospital? I’m also wondering if you have seen any ophthalmologists who specialize in MG and ocular myotonia.
https://www.aao.org/eye-health/diseases/what-is-myasthenia-gravis
Just ask your doctors for a 2nd opinion at a university hospital. My care (for a different autoimmune disease) is managed by doctors 1 hour away but the treatments are done locally. (I mention all this because I couldn’t find any discussions that fit your topic)
How long has your husband been dealing with all this? Are you 2 coping well with the changes?

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@becsbuddy yes he is seen at Yale and has a Neuro-ophthalmologist. Since I posted my question, his original Neuro, who is also an oncologist agrees with the Neuro who specializes in Neuromuscular diseases that it is in fact Myasthenia Gravis based on the SFEMG results. I will keep you posted as to any improvement as he has started steroids. It was 1 year last December for onset of symptoms and then in February both eyes were involved; and one year for IVIG this month which has plateaued with any improvements.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 10, 2022
In reply to @nancybe "@becsbuddy yes he is seen at Yale and has a Neuro-ophthalmologist. Since I posted my question,..." + (show)
@nancybe

@becsbuddy yes he is seen at Yale and has a Neuro-ophthalmologist. Since I posted my question, his original Neuro, who is also an oncologist agrees with the Neuro who specializes in Neuromuscular diseases that it is in fact Myasthenia Gravis based on the SFEMG results. I will keep you posted as to any improvement as he has started steroids. It was 1 year last December for onset of symptoms and then in February both eyes were involved; and one year for IVIG this month which has plateaued with any improvements.

Jump to this post

@nancybe. Thank you for responding! It sounds like you are in good hands. Here is another discussion on eyes and MG.
https://connect.mayoclinic.org/discussion/myosthenia-gravis/

Please keep me posted on your progress!

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