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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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12-25-2009, 04:01 AM | #1 | ||
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Hi Everyone!
Merry Christmas! Thank you to all of you, for supporting me through these difficult 6 months, for being such a great source of encouragement and showing me so much love! You're amazing! Here's wishing everyone great health, joy and prosperity filled with much love in this season! Am so sorry have been unable to logon recently, been caught up with so many things. Had lots to settle for Dad, therafter it was my own health. Fell sick after Dad's wake, took about 1-2 weeks to recover my strength and energy. Haven't been able to keep up with all the updates of everyone, went back to work and tried to resume my old schedule. Lol. Been trying to balance everything, but my body wouldnt listen sometimes. am still unable to resume my old schedule, my body gave up twice I tried to do it. Lol. Lots my voice the first weekend, caught the flu bug the next weekend, and the third weekend, my body ended up with so much pain. My neuro hasn't been very kind to me, piling me up with lots of medicines. I stopped taking some of them, as felt that they weren't really of help. He even started giving me anti depressants, which I felt made me more depressed. Lol. He even suggested that depression may be causing some of my symptoms, including spasticity, which is something I've never heard of. stopped seeing him since, so am solely relying on vitamins. It isn't good I know, but am just tired of hearing neuros say something and yet do others. Decided once again to just wait and wait until I cant take it anymore, then I'll search for another neuro. Its quiet in the house now without dad, and we're all trying to keep mom company as she still seems pretty unstable. Meanwhile other things are good, and other than wishing for more energy, I really can't think of anything else i'd rather want.. Gotta go rest now, love you all! *hugs* |
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12-26-2009, 09:38 AM | #2 | ||
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I am so sorry you have been having such a hard time. I noticed you said you had bad pain after the flu. I have noticed that when the Dr gives me antibiotics my muscles and bones hurt sooo bad I cry and almost live submerged in the bathtub..LOL I hope the new year brings us all a better time.
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12-26-2009, 02:12 PM | #3 | ||
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Hey Connie,
Nice to hear from you, thanks for giving us an update. Sorry you haven't been doing well. I do hope you find a new neuro who can help you and prescribe the right meds so you'll feel better. Take care and I'll keep you in my thoughts & prayers. Hugs, Pat |
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12-26-2009, 07:34 PM | #4 | |||
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Connie,
I'm so sorry for all you've been through recently. I wish you the best and hope you are feeling better soon. Kendra |
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12-26-2009, 09:12 PM | #5 | ||
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Connie,
I totally understand your frustration. It's so hard being sick, especially without a neuro you can trust. I'm without one too right now and I know it can feel a little like free falling without a parachute. Try to hang in there. It's so hard to get through your dad's death, trying to be a source of comfort for your mom. Of course it's going to take a toll on your already fragile health. The unfortunate truth is, there's no easy path through this. Just know that it's a well worn path taken by a lot of people who understand. My thoughts are with you. Ally |
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12-27-2009, 05:03 AM | #6 | ||
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Been thinking of you and wondering how you have been getting on.
I hope you start feeling soon. Love Rach |
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12-27-2009, 07:38 PM | #7 | ||
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Grand Magnate
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Connie, I'm both upset and completely confused by your situation. Do you have MND or what? Do they really even know for sure?
I'm going to come right out and ask - have you seen Dr. Weiss? Since you might be in Florida, I had to ask. What does "sunny south" mean? I feel like starting a clinic with GREAT neuros, and other docs, and flying all of you to it. I cannot stand this anymore. Vitamins for a serious disease? I know, drugs can be awful but so can not doing enough. Damn. I'm sorry you've been sick so much. What kind of muscle pain are you having? Has anyone thought to do any basics like thyroid or a chem panel lately? CPK? I'm just sorry that you have gone through so much and that life has been so hard. Annie |
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01-07-2010, 02:24 AM | #8 | ||
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Joan: lol.. i'm not sure what caused the pain too, thought that its from the flu. Still learning how to pace myself so that my body wont go on strike!
Pat: thank you!! I do not dare harbour thoughts of finding a really good neuro though. am sick of paying them to hear rubbish. Kendra: Thanksss!! Nice to meet you too! =) Ally: Yup, theres no easy way through this. Found that it helps when i focus on things i have to do like my work. I hate having to stay at home and rest cos thats when my mind runs wild. Lol. How have you been? Hows ur condition? Rach: Thankss! *hugs* Annie: I'm just as confused as you are! The neuro who said that anyone who says that my symptoms are caused by depression should see a psychiatrist themselves, started giving me anti depressants which I simply refuse to take. I'm not believing in my initial diagnosis of MND since no one is able to show me that I have it for sure. Sunny south refers to Singapore, where I am. I'm no where near any ALS centres or associations so havent been able to get to one. I'll support u if u start a great centre! Lol. I don't really know how to describe the muscle pain, but they feel as if its all cramped up inside, and they hurt when I try to walk. More recently, the soles of my feet hurt alot whenever I walk. Never had these pain before so I'm not sure whats causing it too. I havent done any tests ever since I stopped my neuro visits. |
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01-07-2010, 03:07 AM | #9 | |||
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Quote:
Connie, I am with Annie, on starting that center. and with you on- The neuro who said that anyone who says that my symptoms are caused by depression should see a psychiatrist themselves, started giving me anti depressants which I simply refuse to take. I believe that people know when they are depressed, and when they are just sad because of the hard circumstances of their life. a good and caring physician should be able to differentiate between normal reactive sadness/depression and true depression which is a psychiatric illness, that like any other illness requires medical treatment. if you have the time and energy look up this- http://www.oup.com/us/catalog/genera...=9780195313048 all the best, alice |
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01-07-2010, 03:26 AM | #10 | |||
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Connie,
so good to hear from you, how is the hot weather treating you. I really feel for you, as here in Australia its been quite hot, and today was very humid, ick, makes my mg bad. Hope you are doing ok take care Kate
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