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Old 09-29-2011, 11:14 AM #1
pkbrcm pkbrcm is offline
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Help please help my sister in treatment of myasthenia

I am writing on behalf of elder sister who is suffering from myasthenia gravis. Her age is 29. Since last 17 years she have been facing these neuro disorders. Sometimes it happens twice in a day, or once in a month. When it happens it lasts hardly 1 to 2 mins. During the incidents she just become absentminded.... and pressing her fingures....now she is ffacing another difficulty of weakness of all muscles. Drs are saying to operate, however there is no positive result in HR CT scan. Found positive results in acetylecholine receptor anbody test. Want to know what is risk involved in operation (after operation).... Will she be fine after operation. What are the best treatment for it. Is life threatening in future? Can she go for marriage life?....firend please me to take care of sister. Quick repons appreciated!
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Old 09-29-2011, 11:40 AM #2
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Hi, and welcome. It is very good that you are asking these questions for your sister. I think the best place to start would be to read about myasthenia gravis on the web. I recommend the Mayo Clinic's website, because its explanations are clear and detailed but not too technical:

http://www.mayoclinic.com/health/mya...gravis/DS00375

I think the surgery you are talking about must be a thymectomy. Here is a good pamphlet that explains what the surgery is, what its risks are, and what will happen afterwards:

http://www.myasthenia.org/LinkClick....BIVoreOXJGo%3D

You say that she has muscle weakness and a positive result on the acetylcholine receptors antibody tests. That means that she has a definite diagnosis, which is excellent. However, I don't know what you mean by the episodes of absent-mindedness you describe that last one to two minutes. This is not a symptom of myasthenia gravis. Her neurologist should be looking for the cause of these episodes.

I hope this helps. Please feel free to ask any other questions.

Abby
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Old 09-29-2011, 12:08 PM #3
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Those "episodes" sound very much like seizures or partial seizures. They are definitely not MG.

I hope your sister can find a competent doctor(s) who can diagnose/treat all of her issues. People with MG can do all the things anyone else can do--only sometimes slower and a bit differently.

Good luck.
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Old 09-29-2011, 02:00 PM #4
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thanks all.yes doc is sayiny thymectomy surgery. Will it cure completely. Articles are saying some neurologists are saying thta it will cure 100 percent, some are sayin no. Have meant that sometimes my sister gets attack of siezures or similar, we have to call her to return back in real life whenever she gets the episodes. If we have to go for thymectomy then what method......is their anyway for MG. Pkbrcm
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Old 09-30-2011, 07:19 AM #5
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Quote:
Originally Posted by pkbrcm View Post
thanks all.yes doc is sayiny thymectomy surgery. Will it cure completely. Articles are saying some neurologists are saying thta it will cure 100 percent, some are sayin no. Have meant that sometimes my sister gets attack of siezures or similar, we have to call her to return back in real life whenever she gets the episodes. If we have to go for thymectomy then what method......is their anyway for MG. Pkbrcm

Thymectomy is definitely not a 100% cure for MG. There are some who do go into remission after a thymectomy, some who see some improvement and some who never see any difference in their condition at all from the surgery. The difference comes down to what is wrong with the thymus.
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Old 09-30-2011, 10:32 AM #6
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i am learning a lot from you people. I am very gratful to you. can you please elaborate symptoms of MG and what are the diagonis should done before goin for surgery. Please let me know what are the best treatment available for it. Is it linked to epilepsy as some doctors had told us initially it is epilepsy.....
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Old 09-30-2011, 12:09 PM #7
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Quote:
Originally Posted by pkbrcm View Post
i am learning a lot from you people. I am very gratful to you. can you please elaborate symptoms of MG and what are the diagonis should done before goin for surgery. Please let me know what are the best treatment available for it. Is it linked to epilepsy as some doctors had told us initially it is epilepsy.....

I had not heard of it being linked to epilepsy before, however it appears that we may be more susceptible to epilepsy than the general population...

http://ntur.lib.ntu.edu.tw/bitstream...70976/1/11.pdf
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Old 10-01-2011, 11:16 AM #8
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With positive antibody test and negative CT thymus scan - you are left trying to decide if the surgery is worth the risk. There have been folks here who have been in exactly same position. Some have had good results after surgery and others have not. It is a personal decision - with no guarantees - to be made by the patient /family and medical staff.

I hope your sister's condition improves whatever the decision is.
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