kathylee
7 post s
21-Jul-2008
7:29 PM
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Please tell me if I have done something inappropriate for this envireonment. I left the message about being hoptialized on 7-3 and as yet no answers. I'm very scared here and looking for support. Is there some ediquete or rules I missed. I admitt that I not reading all the fine print cause the Sjogren blurring and a major catract in left has me very compromised. Let me know if I need to do something differnt.
Much appreciated
Kathylee
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TinTN
3 post s
21-Jul-2008
8:53 PM
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Hi Kathylee! I'm new to this forum also. I tried to find your message from 7-3, but did not see it. Did you perhaps go back before you had actually posted? I have only posted one thread so far, but everyone seems so sweet and concerned about trying to support one another.
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TinTN
5 post s
21-Jul-2008
9:17 PM
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I just found your post - it was listed as July 20. I am so sorry to hear about everything that you are going through. It doesn't sound like the professionals that you have been dealing with know very much about this disease. I was only diagnosed a few months ago myself, but I knew more about MG than the first neuro I went to. I know that it is frustrating, but hang in there. I don't have a lot of helpful advice, but I wanted you to know that there are people out there who care. Wishing you better luck soon!
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LynseyH
211 post s
21-Jul-2008
11:33 PM
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Hi Kathy, Bear in mind not everyone is able to give input on everything - we all have different experiences and sometimes don't really have anything to contribute in all cases. I'm sure you've not done anything wrong, don't worry! Lynsey
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22yrs old
female
London
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chairman
MGA Chairman
792 post s
22-Jul-2008
1:13 AM
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Kathylee There was a reply to your original post which, I think, included some very sound advice. Have you looked at the information on the MGA website. MG is a complex disease which varies enormously from one person to another. There are no quick and easy answers. Please also remember that this a patients' Forum - generally speaking Medical Professionals do not post messages here (even though they may be lurking in the background!).
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 Peter Finney
MGA Chairman
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Mariah
5 post s
22-Jul-2008
10:14 AM
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I am new to this forum lark ,but I have posted a letter on the DAPS and it has disappeared ,have I done or said something wrong too?? Also I am a LEMS person ,but as yet no one as replied to any of my input!! I joined the forum because I wanted and to give support ,sometimes we need to express ourselves ,am I writing to myself ?? Anyway awaiting replies Hmmm
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LynseyH
213 post s
22-Jul-2008
10:33 AM
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Mariah - I've been writing here for getting on for two years now and haven't heard of disappearing posts in that time. If message threads (posts, topics, whatever you wish to call them) aren't added to they will fall downward in the list and may end up on the 2nd page, or beyond. Only the most recently updated threads stay on the front page. Make sure you select 'start new topic' on the main board front page, give your message a title and content, select post message and that's it. Best
Lynsey
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22yrs old
female
London
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Mariah
6 post s
22-Jul-2008
12:18 PM
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Daps has appeared again ,Im sure it wasnt there earlier ,anyway Thankyou for your reply ,it is nice to know somebody ,somewhere is using and answering queries ,and basically taking time to explain ,something so simple Thankyou .
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chairman
MGA Chairman
793 post s
23-Jul-2008
10:46 AM
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Mariah I had a look at your original post - it WAS there all the time. The question you asked - about heart palpitations on 3-4 DAP - is something only a skilled medical practitioner who has experience in prescribing this drug could answer, and even then he would have to have access to your medical history to do it. I tried to point out earlier that this Forum is not visited routinely by medical professionals. You need to consult your doctors if this problem persists. If people do not respond to a question - it is not because they do not care, it is because they do not know the answer.
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Peter Finney
MGA Chairman
Last Edited on 23-Jul-2008 10:48 AM
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Mariah
7 post s
23-Jul-2008
12:20 PM
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Mr Chairman ,Thank you very much for answering and explaining to me . My eyesight must of deceived me I'm afraid!!
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Mariah
11 post s
27-Jul-2008
10:58 AM
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Mr chairman would it possible to email me and explain the reasons for closure on LIFTED UP? I am very upset about this .Thankyou very much .
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chairman
MGA Chairman
810 post s
27-Jul-2008
12:30 PM
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Mariah There is a strict embargo on any discussion which drifts into religious affairs whether intentionally or not. This has been discussed extensively before on this forum. After many years of running and participating in numerous bulletin boards newsgroups etc I have reluctantly concluded that when this happens the best solution is to stop it immediately. Note that by doing this I am not allocating blame or implying bad intentions from any one in particular. I sorry you have been upset by this.
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Peter Finney
MGA Chairman
Last Edited on 27-Jul-2008 12:31 PM
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Mariah
12 post s
28-Jul-2008
7:02 AM
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Mr Chairman , 'Thankyou' for taking your time in explaining to me . Have a nice day .
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