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Old 06-04-2012, 11:07 AM #1
Anacrusis Anacrusis is offline
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Default I´m supposed to be in remission why is it still spreading?

(Thank you for encouraging questions and sharing your experiences in my last post, Annie )

I´ve understood we don´t know everything yet but have also realized this place is the closest I´ve been to getting any answers at all. I´m impressed with the wealth of knowledge, experience and clarity of expression that all comes together in this Forum !!! So I will pluck up courage and ask just one more question for the time being.

For want of a better measuring system I almost want to´borrow´decibel units as a measure of intensity in myasthenic weakness...3 stages have occurred in recent years.....
(I wrote about my experiences on the´sticky´section if time to read)

1. A four year period of myasthenic weakness in limbs starting at 5 units slowly escalating to 100 units
2. A five day period with sudden freefall down to almost 0 units one year ago (no MG medication)
3. Recent three month period of 20 units (myasthenic activity is down to a whisper but still quietly affecting new areas)

Question:
Would a simplistic and hypothetical answer be that antibodies (either circulating/tissue bound) are latent/not activated like they were before and are still in the body?
(No SFEMG taken and all other tests normal)
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Old 06-05-2012, 01:54 AM #2
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alice md alice md is offline
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Default

First, you can have myasthenic symptoms without having antibodies.
For instance- congenital myasthenia which is the result of genetic abnormalities.

Second, patients with classical myasthenia in remission still have detectable antibodies in their blood.

Third, MG is one of the craziest disease, so don't expect yourself to understand everything.




Quote:
Originally Posted by Anacrusis View Post
(Thank you for encouraging questions and sharing your experiences in my last post, Annie )

I´ve understood we don´t know everything yet but have also realized this place is the closest I´ve been to getting any answers at all. I´m impressed with the wealth of knowledge, experience and clarity of expression that all comes together in this Forum !!! So I will pluck up courage and ask just one more question for the time being.

For want of a better measuring system I almost want to´borrow´decibel units as a measure of intensity in myasthenic weakness...3 stages have occurred in recent years.....
(I wrote about my experiences on the´sticky´section if time to read)

1. A four year period of myasthenic weakness in limbs starting at 5 units slowly escalating to 100 units
2. A five day period with sudden freefall down to almost 0 units one year ago (no MG medication)
3. Recent three month period of 20 units (myasthenic activity is down to a whisper but still quietly affecting new areas)

Question:
Would a simplistic and hypothetical answer be that antibodies (either circulating/tissue bound) are latent/not activated like they were before and are still in the body?
(No SFEMG taken and all other tests normal)
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"Thanks for this!" says:
Anacrusis (06-06-2012), AnnieB3 (06-05-2012)
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