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Old 06-09-2018, 04:30 AM
Olle Olle is offline
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Join Date: Jun 2017
Location: Europe
Posts: 5
5 yr Member
Olle Olle is offline
New Member
 
Join Date: Jun 2017
Location: Europe
Posts: 5
5 yr Member
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Quote:
Originally Posted by AnnieB3 View Post
Hi, Olle. Welcome to the across the pond forum!

Would you mind saying how you were diagnosed?

The ocular muscles fatigue faster than other ones. I don't have time right now to do the research for you (sorry). Throwing more steroids at the problem might not help in the long run. And you need to be careful about abrupt adjustments in steroids. Your adrenal glands are no longer working, due to steroids doing that job for them! Adrenal fatigue from drops in steroids that are too large can cause an adrenal crisis, which can lead to an MG crisis.

What drugs are you still taking? If you are better, Mestinon can cause too much acetylcholine to be present, making muscles weaker. Some patients do overdose on Mestinon.

Steroids helped my ocular muscles first, then the rest. Could you possibly have an additional issue going on?

I think you should have a good conversation with a neurologist. I can't really say what is going on with your ocular muscles. Doctors have far more knowledge about how the muscles work, etc.

I hope you can figure out something to help with your ocular MG. Sometimes placing a cool washcloth on the eyelids or blowing a small fan at the face can help.

Annie


Thanks for your reply, Annie!

I was diagnosed through antibody blood test (0,58nmol/liter) which was considered intermediate by my first neurologist, negative by my second, and positive by my current one (who is the top specialist in our country). That together with a positive RNS finding in orbitalis oculis set the diagnosis. Note that I was negative and/or intermediate in EMG and SFEMG!! So, it was a hard time getting a diagnose and I needed to change doctor. I had a remarkable effect from the medicines and I've really gotten my life back

Now I am on prednisone 7,5 mg daily and mestinon 60*4.

You write that steroids helped your ocular muscles. For how long did it help? Are you still good in the eyes? What are your doeses, if i may ask?

Thank you a million times.
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"Thanks for this!" says:
AnnieB3 (06-09-2018)