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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Finally, a year after my diagnosis, my neurologist decided to do a thymic cat scan. I had it done last Friday. I should know something next week. I don't know whether to wish for a thymoma, surgery, and hope for a cure; or to wish that the test comes back negative.
Another note; I changed blood pressure medications. I got off of the beta blockers. I have noticed some improvement though I am certainly not back to normal.
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Celeste |
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"Thanks for this!" says: | Anacrusis (04-07-2013) |
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#2 | ||
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Quote:
I would wish for an answer, accept what it is and go from there. That way you won't be disappointed if it is positive or negative news. Good luck ![]() |
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"Thanks for this!" says: | Anacrusis (04-07-2013), southblues (04-07-2013) |
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#3 | |||
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Even if there is not a thymoma, if they see hyperplasia or enlargement and you are under 60 yrs of age, I think the general rule now is to do a thymectomy now. From what I read it has a pretty good outcome with almost a third going into remission, another third seeing improvement and the other third no worse when they started. I remember reading that remission can take up to 2 years because antibodies can circulate for that long.
I am hoping for a thymectomy. I think the neuro said that they often do plasmapharesis first to get you in good shape and do the surgery within a couple weeks after that. i am hoping for the best outcome for you and remission, kathie |
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"Thanks for this!" says: | southblues (04-07-2013) |
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#4 | |||
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Celeste, I have been thinking about you. Any word on your cat scan yet?
kathie |
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"Thanks for this!" says: | southblues (04-10-2013) |
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#5 | |||
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I called this morning and the results were not there yet. Hopefully I'll know something tomorrow.
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Celeste |
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#6 | |||
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Well I guess I get to worry all weekend. I was told that I could be told the results of the scan over the phone by the receptionist. Now that the results are back, they won't discuss it with me. The doctor is out today. He will call me if he happens to get their message; otherwise, I get to try again Monday. I think that they found something.
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Celeste |
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#7 | |||
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Celeste, try not to worry too much, I know how hard that is. It may not be a thymoma, only an enlargement or hyperplasia. If it is a thymoma, I believe most of these are non-cancerous. They have new techniques for surgery that are not so invasive now.
Just try to focus on this if you need a thymectomy, it may be your best chance for a full remission. I will keep you in my prayers and let us know as soon as you hear something. kathie |
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"Thanks for this!" says: | southblues (04-12-2013) |
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#8 | ||
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Celeste, I was in your shoes a month and a half ago and I think you should do whatever it takes to not worry. If there is a need for urgent action, I'm sure they wouldn't wait until Monday to speak with you.
If you have a thymoma, you and your docs have plenty of time to decide how to deal with it. Thymomas are very slow growing. If you have a lesser thymus abnormality (like hyperplasia), you have even more time for a decision and may choose to do nothing. Your results may be normal, in which case, the receptionist can't tell you anything anyway. The worst is just 'not knowing', but try to find a way to be OK with that. Some things, you just can't know about today and you can't change that. It's best not to dwell on what you can't change. I hope you get good news at the first possible moment and I hope you don't worry so much about the unknown. I'm sure the news is much, much better than your worst fear. |
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"Thanks for this!" says: | southblues (04-12-2013) |
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#9 | |||
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I called the doctor's office again this morning. They said that he would call me back after 5:00 pm. They would not remotely discuss anything with me. Then I called the place that did the test. They will give me the results if I drive to their office 45 miles away. It would make me miss work which I can't afford to do today.
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Celeste |
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#10 | |||
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Hang in there, Celeste. My thoughts and prayers are wish you.
Hoping for an improvement in your condition kathie |
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"Thanks for this!" says: | southblues (04-15-2013) |
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