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Old 09-01-2014, 07:06 PM
Hfleming Hfleming is offline
Newly Joined
 
Join Date: Sep 2014
Posts: 1
8 yr Member
Hfleming Hfleming is offline
Newly Joined
 
Join Date: Sep 2014
Posts: 1
8 yr Member
Default Newly diagnosed with MG

Hi all, i have just been diagnosed with MG and here is my story.

Around 2 years ago I started seeing badly, and I thought it was just my age, 50, and thought I just needed new glasses. Before I could visit the optician I got sent to Asia on assignment for the whole of last year. I thought the heat was going to kill me, and I was not at peak performance.

Fastforward to this year.

My vision was getting really bad, so bad that I felt unsafe driving, esp. At night as the oncoming cars all had 4 headlights. Decided that now i have to go to the optician for new glasses. He referred me to an eye-specialist. Eye specialist took one look at me, and referred me back to my GP and said she must send me to a neurologist and for CT and MRI scans as I have ptosis and he suspected a tumor pressing on my facial nerve.
It was at that time that I discovered a lump in my neck, and I thought i must've picked up some infection or something in Asia.

Well, got sent for the scans and immediately referred to a ENT. They did a biopsy and said it was a Scwannoma on my vagus nerve, that also presses on the facial nerve and the nerve responsible for swallowing, but that they would wait and see how the tumor grows, as removal would be very risky. Ok, I thought, will just have to get used to this, as there is nothing that can be done right now.

A couple of weeks later I discovered I cannot open my right eye on its own anymore, but I could open it if I open both eyes simultaneously. About a month later, the same happened to my left eye, and a week later, if i close my eyes, it became impossible to open them again without using my fingers. I also stopped breathing when I tried opening my eyes. To breathe again, I must shut everything out of my mind, force myself to relax all my muscles, and then I can breathe again. Back to the ENT departement at the hospital. More tests and then I heard that it has nothing to do with the tumor. Got referred to the neuro and had to wait for more than a month to see her.
In that time I learnt a couple of techniques to open my eyes, without physically opening my eyes with my fingers, like lifting my left arm up, and then suddenly flicking my left index finger, or sticking a clothespin besides my eye. That hurt like hell, but as long as pressure is applied on certain spots around my eyes, I could open them.

Finally I got to see the neuro. She specializes in MG diagnoses and does a lot of research. (The hospital is a university hospital). Whilst waiting for the blood tests to come back, she placed me on Mestinon. 60mg every 5 hours. Finally, after 6 months I dont have to go through ridiculous means of opening my eyes, I can lift my right arm above chest height and still breathe.

I see that the mestinon stops working after 4 hours, so I have to take it then, and I am now on 70mg, as on 60mg my eyes would still fall closed if I lift my right arm.

More appointments and tests with neurologists in the pipeline as soons as the bloodtests come back, but at least I am starting to feel like a functional person again.

Just my bad luck that I got both conditons at the same time, both affects my eyes, swallowing, voice, etc (well, the tumour only affects half of my face, half of my vocal cords, etc).
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