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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-17-2011, 06:24 PM | #11 | ||
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Exodus, how much medrol were you on?
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11-17-2011, 07:54 PM | #12 | ||
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Junior Member
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..Thanks all for your replys!
I really do want to know whats causing the swallowing to stop. I feel the anti depressants would just shut me up about it. But there are days that I feel so confused about what is happening to me that I think maybe being a zombe for a while might not be such a bad thing, even though it's not helping the problem to be able to swallow again. ( I am not looking forward to the big family Thanksgiving dinner ) All kind of thoughts come into mind, should I sit at the table when everyone sits down to eat, should I go sit in the other room and pretend I'm watching TV and not seeing and smelling all the wonderful food, or should I just not go and tell them I'm not feeling well, but then that would not be nice for my husband. The 2nd opinion Neuromuschular doctor called today to set up an appt. on Dec. 22. The women who called said they would first do an office visit and then at 1:00 they are going to do a Stimulation test. I heard that test is very painful, I don't need more pain I have had a EMG and SFEMG but the doctor said those tests were normal. Those test wern't to painful and was over quickly. I did have a EEG that came back abnormal, but my neuro didn't think that had anything to do with my swallowing problem. I have to check if the 2nd opinion Doctor and hospital even takes Medicare, I'll call tommorrow to find out. If they don't I don't think I'll even be able to afford going there. The strange part of this is that I can swallow in my sleep state at night, but as soon as I awake my mouth fills up with saliva and I can't swallow and the choking begins. I go thru the whole day not swallowing at all, just spiting which I find digusting and tiering. I am praying for an answer and Trusting He hears me! |
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"Thanks for this!" says: | DesertFlower (11-24-2011) |
11-18-2011, 02:23 AM | #13 | |||
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It sounds very hard and frustrating.
I think the clue is in the fact that you do not have those symptoms when you sleep. Many times in medicine unusual symptoms that don't fit are the clue to the diagnosis.When I was a resident I made a "brilliant" diagnosis that everyone else missed, just because I didn't think my patient was an excentric old man, that surrounds himself with boxes of tissue paper, but asked him why he is doing this. In the early days of my training, I had an excellent teacher who told me that being a physician is like being Sherlock Holmes. You have to pay attention to every small detail, even those that seem unimportant or irrelevant, and be cautious not to jump into conclusions just because you see the butler's finger prints on the knife. He told me that if you want to be a good physician you have to learn how to combine art, science and detective work. I later learned that as a patient you have to do the same. I gradually put together all my "unexplained" symptoms that didn't fit my MG expert's paradigm of MG. I meticulously documented them, checked when and how they appear. At first it was total chaos, like scattered pieces of a jigsaw puzzle, but with time it made more and more sense. My repeatedly normal SFEMG was a clue, my "unexplained" response to steroids was a clue, my "unexplained collapse like episodes" was a clue, My "anxiety attack" during a very simple blood test, etc. etc. It took me more than a year (in which I was nearly bed-ridden and even reading a short paper was a major task) to gradually figure it out. And yes, I too had days in which it was so confusing and frustrating that I just wanted to get away from it somehow. The thought that it may all be just some emotional problems that could be fixed with some "talking" (not that I was able to talk much at that time) was very tempting. I could understand how people could eventually accept those psychiatric diagnoses, just sink into it, and stop fighting for what they know is right. How long can you keep on fighting windmills and dragons at the same time? As to your question regarding thanksgiving dinner. I personally kept on being with my family and friends as much as possible. I tried to preserve as much of my normal and healthy self and normal social life as possible. I had (and still have) occasional days of despair, in which I just wanted to be left alone in my room, and not see anyone, but most of the time I participated in social activities just like before. |
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11-18-2011, 09:18 AM | #14 | ||
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11-18-2011, 11:38 AM | #15 | |||
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11-18-2011, 04:07 PM | #16 | ||
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Elder
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I agree with another post here. Please be careful if you decide to take an anti-depressant. some of them can cause swallowing difficulty, you don't want to make your problem worse. Did you receive an upper GI endoscopy? I have difficulty swallowing also, due to barretts esophogus. They took me off serequel, because it is counter indicated for people with swallowing difficulty. I am sorry this has happened to you. I know how uncomfortable it is not to be able to swallow well. Tell your family the truth, maybe there will be some support for you, and some compassion. Allow them to help you through these difficult times. I will keep you in my thoughts and prayers. ginnie
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11-18-2011, 06:19 PM | #17 | ||
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Junior Member
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..Thank you all for your support and replys.
To Ginnie, When the Gastrol Doc. put in my feeding tube he went down thru my mouth and while he did this he was checking out my esophogus and stomach area. He said everything looked healthy inside. My swallowing problem is differant from a esophogus problem I think because I can't get the message to my throat to swallow. I put in the food or drink and there is no click for it to swallow. The drink will usually run down my windpipe and the food will just sit there in my mouth until I spit it out. To Alice md, Another strange thing or clue is I have so much drainage post nasel that I can't swallow, along with my saliva But before the feeding tube was put in I Always had my nose dripping on the outside so I always had a tissue in my hand to dab it away. Why now is the drainage Only running down my throat and trying to choke me? I wonder if the Gastrolagest moved something in the back of my throat when he put the scope and then the peg tube down there. I also wonder if I should go to a nose throat specialist. It's all so crazy, maybe thats why they want to shut me up with antidepression meds. I went for a musk blood test, it should be back in a couple of weeks, maybe another clue to whats going on with me. My neuoro said he's not questioning the M.G. dx. he's just dosen't think thats why my swallowing is gone, hence the 2nd opinion. |
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11-19-2011, 01:14 PM | #18 | ||
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Elder
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I now understand the difference. Your brain is not sending the correct message to swallow. This must be very hard for you. I hope there is a solution to the problem so that you can enjoy food once again. Have they given you any reason for this? You didn't have a stoke or something like that? I will keep you in my prayers, and hope that your doctors can do something to make your life easier. Loosing the function of our bodies is very difficult to live with, and can make a person depressed. I know they want to give you that kind of medication. Most of them do not make you spacy or have bad effects. Please try to be good to yourself. I will keep checking back with you to see how you are doing. In the meantime I will pray that there is resolution for this swallowing problem. I also hope you are able to have a peaceful thanksgiving, surrounded by love and support. ginnie
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11-19-2011, 09:03 PM | #19 | ||
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Junior Member
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Drugstore was OUT OF MEDROL (the 4mg dosepaks) that's how I ended up on thoughts - no sleep - ready to leap tall buildings in a single bound - even after the 3 week taper. That was 3rd of July . . . now - I'm at the opposite end of the pole - have to literally drag myself out of bed to accomplish anything at all - amotivational, bigtime
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11-20-2011, 11:31 AM | #20 | ||
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Elder
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prednisone does cause all kinds of side effects.
everything from feeing depressed, to being super hyper. It has to be tapered off, when you have been on it long term. It can effect sleep and your appetite. I hope you don't have to take this medication a long time. I had an experimental protocal for an auto-immune deficiency in the 80's. To calm the effects of the drugs I was taking, DNCB a topical immunosupressant, I was given prednisone. I hated that drug more than the DNCB treatment. It is a medicine to be careful with. ginnie |
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