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Old 06-27-2010, 06:17 PM #1
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Default MG and memory loss

My son who has MG has started to notice that he has short term memory loss. I have tried to look up the Mestinon that he takes but that does not show any side effects of memory loss. It is gradually getting worse and is starting to affect him quite a bit. I started really noticing it in the last year or year and a half. Anyone out there with similar problems? He is 15 years old.
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Old 06-27-2010, 10:09 PM #2
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Hey MG mom. Sorry your boy is experiencing short term memory loss. It really does suck, i suffer from the same. Ill be having a conversation and just completely forget what we were talking about. But im not on mestinon..i was but not anymore it doesnt work for me since my neuromuscular junctions are too destroyed. Yet, im on cellcept and prednisone.

Is he on any of these meds?
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Old 06-28-2010, 03:05 PM #3
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Hi Mg Mom,
I'm on Mestinon, Pred and Cellcept. I also experience some short term memory losses and for me the culprit is... Pred!
Maurice.
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Old 06-28-2010, 05:42 PM #4
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I have some memory problems occasionally and it is usually with verbal communication, sometimes I can't remember some of the words I was going to say and I have to pause and think of a different word or change my sentence...so I am not such a great communicator verbally these days...I can still type fine since I can pause long enough to find the words and so I use email a lot so I can communicate clearly.

These memory problems started at the same time as my MG symptoms so I would say that they are directly related, but I don't understand how.

I am only taking Mestinon for my MG.

Vitamins, mostly Vitamin B-12, seem to help my memory troubles, but nothing makes it go away completely. Maybe I have a vitamin/mineral deficiency that is causing this, but nothing confirmed.

Sorry your son is having memory problems, it is no fun.
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Old 06-28-2010, 08:17 PM #5
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Heart Hi MG mom!

First off, let me welcome you to the BEST site on the web for MG! I am so sorry that your son is going through this

I also suffer from memory loss. I call it my mg brain fog and have to write down everything or bring someone with me just in case.

I take pred, cellcept, and mestinon...........

I can't wait to hear from you when you have more time...........

Again - I am sending you big hugs and lots of prayer from San Antonio Texas!

Hugs!
Erin



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Originally Posted by MG mom View Post
My son who has MG has started to notice that he has short term memory loss. I have tried to look up the Mestinon that he takes but that does not show any side effects of memory loss. It is gradually getting worse and is starting to affect him quite a bit. I started really noticing it in the last year or year and a half. Anyone out there with similar problems? He is 15 years old.
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Old 07-01-2010, 08:04 AM #6
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Thanks to everyone who answered me. My son is just on Mestinon but he also takes Gabapentin which is seizure medication. I am going to talk to his neurologist next week and see if that might be it. He takes that for the feeling that he has all the time wanting to pull and stretch his muscles. If he doesn't take that he goes crazy with that sensation that he feels all the time. The Gabapentin helps that but it might be what is causing the memory loss. We will see. Thanks so much for everything.
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Old 07-01-2010, 11:53 AM #7
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Hey MG Mom,

Welcome! I'm sorry to hear your son has MG and other health issues at such a young age. I have been taking Mestinon for almost 11 years and haven't had any memory problems because of it. I hope you figure out what is causing his and wish you both the best. Take care.

Hugs,
Pat
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Old 07-01-2010, 03:42 PM #8
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Hi MG Mom, I saw this, and wanted to quickly reply, as I can imagine how difficult it must be for a Mom to watch her child go through all these symptoms.
Many MG'ers seem to have this symptom. I'm not exactly certain what the cause is, but I don't think it's the Mestinon.
It's been a while since a group of us discussed this issue, and for the life of me I can't remember what some said about it as far as the medical side to it happening. But many of us had this problem.
Some times, I wonder about the lack of Oxygen, from weakened lung muscles. I do remember it was something I was asked at the MDA clinic, and they too said it seems to be a symptom in many Mg'ers. I don't think they had a clear answer.
Probably depends on how a person's MG is affecting a person's body. As we are all so different, and different in how MG affects us. It's the reason Myasthenia Gravis is known as the SnowFlake disease.
Best of wishes, hope all is well soon.
Will keep you in my prayers
Love Lizzie
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Old 07-01-2010, 11:53 PM #9
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Wink Erin!! I am in the SA support group

Hi Erin!!

Wow this is so ironic....well my name is Zayna and I have had MG for yr 1/2 now. When I first got diagnosed I googled away and saw your testimonial on the alamo support group site...I calle Gail and went to the next meeting...I have been going to meetings ever since. I always ask Gail if she had talked to you because I am always curious to how you are doing now...I would say out of everyone in the group my case is most similar to yours....I would love to hear from you....let me know how you are these days!
Love
Zayna


Quote:
Originally Posted by erinhermes View Post
First off, let me welcome you to the BEST site on the web for MG! I am so sorry that your son is going through this

I also suffer from memory loss. I call it my mg brain fog and have to write down everything or bring someone with me just in case.

I take pred, cellcept, and mestinon...........

I can't wait to hear from you when you have more time...........

Again - I am sending you big hugs and lots of prayer from San Antonio Texas!

Hugs!
Erin
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Old 07-02-2010, 08:49 PM #10
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I take Mestinon, CellCept, and B12 shots.
I have read that low B12 results in memory problems.

I have many similar symptoms that have already been mentioned. I can't remember names. I can start saying something and the wrong words come out of mouth. I saw things backwards. I can tell it is happening. As a teacher this makes me nervous, I don't want to be giving kids misinformation. I tell them about my disease and my symptoms and tell them to not be afraid to speak up if they think I say something wrong. They are good about letting me know.
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