bellabella
14 posts
Jul 13, 2010
2:29 PM
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i hope you dont hink iam speaking out of turn but i have posted a few times but never get answers i posted last week about eye closure and i have checked back but no replys is it because iam not a reguler on the site i try to avoid the computer coz my eyes are bad...my question is my eyes mainly my left one is closed most of the time i take mestinon 4 times a day 50mg of prednisilone each alternative day,and aziothioprine every day 150mg but my eyes just close i work in an office and things are really difficult any advice
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SandieP
3 posts
Jul 13, 2010
2:44 PM
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Hi bellabella,
I share your frustration with getting no response! I live in California and was diagnosed in Feb of this year. I heard about a great drug that was tested in the UK and have posted a note in the old site and again in the new forum to find out how the trial went---but I'm met with silence! I don't have your exact problem but perhaps more mestinon could help. My eye has partially closed several times and is droopy quite a bit. I started with mestinon 4 times a day but now I take it 7 times a day and I'm on Prednisone 20-10MG alternating days. I've had some improvement but still have speech and swallowing problems. I also work full time!
Cheers! Sandie
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Max Sherman
Derby Support
71 posts
Jul 13, 2010
2:58 PM
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Have you tried also posting your message on our new Forum. www.mga-charity.org and click on Forum. You will have to re-register but it will give you a bigger audience to read your post.
Good Luck
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Max Sherman
Office and Support Manager MGA
max.sherman@mga-charity.org
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SandieP
4 posts
Jul 13, 2010
3:20 PM
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Hi Max,
I thought I was on the new Forum! I'll take your suggestion. Thanks for your help!
Cheers!
Sandie
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ragdoll
362 posts
Jul 13, 2010
10:51 PM
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Hi Bella,
Have you discussed this with your neuro, he is best placed to give you advice. Other than rest I can't suggest anything else to help. If you have started the Aza recently (less than 2 years) it may not be fully effective yet. For me the drugs you are on would be ineffective, but everyone is different with MG and requires a different mix and level of drugs.
Last Edited on 13-Jul-2010 10:52 PM
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SandieP
5 posts
Jul 14, 2010
10:51 AM
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Hi Max,
Are you still listening??? I've tried to get a message on the new site and I can't seem to get a new thread started. According to the directions, you select a catagory (which I did) then click on "Post New Thread." I can't find that that link. What am I doing wrong???
Cheers!
Sandie
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Bevj
78 posts
Jul 14, 2010
11:05 AM
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Hi Sandie
If you go into the category which interests you, above the list of threads you will see a 'Search' box. To the right of the box is 'Search this category' and then to the right again 'Post new thread'.
Hope this helps!
Bev
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SandieP
6 posts
Jul 14, 2010
12:22 PM
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Hi Bev,
Thanks for your suggestion but I must be on the wrong screen! I still can't seem to find the "post thread" link. After I select "research" I can see the Search box but there is nothing to the right of this box. I can read all the postings but can't communicate! Good grief! It must be the California sunshine!
Cheers!
Sandie
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Bevj
79 posts
Jul 14, 2010
12:32 PM
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Sandie -
I just looked on the 'Research' page and there is the search box with 'Post new thread' at the side.
However if I log out and go to the page as a 'Guest' I can't see the 'Post' option.
Are you certain that you have registered on the new site? Being registered here doesn't count, you have to do it again.
Good luck!
Bev
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SandieP
7 posts
Jul 14, 2010
3:30 PM
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Hi Bev,
You're probably right. I've registered twice--- once in the old site and once in what I thought was the new site. Perhaps I just registered twice on the old site! I'll give it another try tomorrow!
Cheers!
Sandie
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chairman
MGA Forum Chairman
1581 posts
Jul 14, 2010
11:34 PM
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Sandie
You do not seem to be registered on the New Forum.
Go here to register: https://www.mga-charity.org/web/guest/join-in
(don't forget to click the SAVE button.)
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 Peter Finney
MGA Forum Chairman
Last Edited on 14-Jul-2010 11:36 PM
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SandieP
8 posts
Jul 15, 2010
11:45 AM
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Hi Peter,
Thanks for your help! I hate to admit it but I never clicked the "SAVE" button! I'm up and running now!
Cheers!
Sandie
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SandieP
9 posts
Jul 15, 2010
12:13 PM
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Hi Peter,
Well, I still can't seem to post a thread. If you're still out there---could you please give me some information about the clinical trial of Monarsen (EN101) in the UK? I posted my question in this forum but no one answered. I saw a few comments in the research section that indicated there were some problems. I'm hoping this drug will be approved for distribution soon. Thanks for your help!
Cheers!
Sandie
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chairman
MGA Forum Chairman
1582 posts
Jul 15, 2010
12:20 PM
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Sandie
I think you should persevere with the New Forum.
Have you signed in to the New Forum?
You should have received an email with your password.
In any case, as far as I am aware there have been no recent developments in the Monarsen saga.
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Peter Finney
MGA Forum Chairman
Last Edited on 15-Jul-2010 12:22 PM
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SandieP
10 posts
Jul 15, 2010
4:21 PM
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Hi Peter,
Third times the charm! I can finally see the box to post a thread! Thanks for the encouragement I needed to get me to try again.
Cheers!
Sandie
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