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.

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?

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.

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.

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:hug:

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:hug:

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.

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

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

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.

Hi, MG Mom. Do you have an informal name?

I'm sorry your son has MG. That's pretty young but kids are often better at adjusting to disease than adults are. ;)

Do they know the cause of the feeling of wanting to pull and stretch muscles? Has it been clarified better? Could it be parasthesias? Has anyone checked his B12 level, like Desert Flower and TBarney mentioned? My B12 deficiency made me want to rip my feet off. I'm always wary of doctors who throw a drug at a problem without figuring out what is causing symptoms first. I'm not saying that's what your son's doctor did but they often do that.

Neurontin/Gabapentin can be a useful drug but it can unmask MG in someone, cause MG or make MG worse in someone who has it.

http://www.ncbi.nlm.nih.gov/pubmed/10918256

http://www.painjournalonline.com/art...004-6/abstract

Is it possible your son has celiac disease? If it were me, I would call your son's doctor and discuss the possibility that the drug he is on could be making him worse. Did he have an EMG? Parasthesias are a small fiber neuropathy, which has a lot of causes. Here's a very good article for you.

http://www.ccjm.org/content/76/5/297.full

Mestinon itself doesn't usually cause memory issues. MG may cause them over time but it's unlikely this soon. It may be the Gabapentin.

http://www.minddisorders.com/Flu-Inv/Gabapentin.html

Do not stop a drug without talking to your son's doctor first. Drugs like Gabapentin may need to be withdrawn slowly. A symptom like memory loss should be called in to their office right away.

I hope your son gets some relief from something. Does he take vitamin D and calcium? You'd be surprised how many people have muscle aches from a vitamin D deficiency.

Best wishes to you and your son.

Annie

I was going to mention Celiac Disease as well - sometimes, though, people are just gluten sensitive and won't test positive for CD. A gluten-free diet is beneficial for them as well. Gluten can cause problems with memory in some people, and if you have one autoimmune disease, you are at a higher risk of having another one. Celiac Disease is MUCH more common than most doctors realize (1 in 133 people), and the incidence of gluten sensitivity is believed to be much higher than that.

There's a great page on this forum that you can reference: http://neurotalk.psychcentral.com/post8767-2.html. I was diagnosed with CD 2 years ago, and was just recently diagnosed with MG. I have a feeling that the GF diet helped reduce many of my MG symptoms. Before I was diagnosed with CD, there were times when I felt like I was going to crawl out of my skin. Within a few days of starting a GF diet, I felt MUCH better overall. Now I can tell if I accidentally get "glutened", because that "crawly" feeling comes over me again!

It is so good to know that other people have memory problems - I thought I was getting early Alzheimer's!.....:p

Wow! I'm so glad I've been reading thru these posts today. Since all of my severe symptoms started in the middle of March I've noticed a huge increase in memory loss. Like all of you have mentioned I too, have had a lot of memory problems as you all have mentioned.

Things that I forget or have problems with: names of friends or people I should know, subjects I'm having conversations with in the middle of, words to use during a conversation, appointments and times and places where to go, events, and so on. Pure brain fog. Now I completely understand why my neurologist is having my memory tested next week. I thought it was due to a medication I'm taking. Guess that is not the reason why. When I did a search on this disease it never had memory loss as a symptom but it appears it is a bigger symptom than is ever recognized.

It is very humbling when this happens in public or with family/friends. They just do not understand and look at you like 'what a dork'. When I showed my DH last night a lot of the things about MG he then realized that I do have something severely wrong with me after not believing anything has been wrong with me for the last 9 months. He has noticed the memory loss and slurred speech for a few months but didn't think anything of it.

I'm really glad that the doctor mentioned this disease yesterday. Though I don't want anything serious wrong with me- I do want answers and a form of treatment for my symptoms and hope that I will have some periods in time that I can feel better instead of constant misery. I'm scared of never feeling better ever again.

Coffeegirl

Many doctors don't understand how patients can be "happy" when they get an MG diagnosis - we're not happy because we have this disease, we're "happy" that we finally have a DEFINITE diagnosis and it's not all in our head! Some doctors will say, "You really don't want this", but they don't understand that once we have a name for what's been ailing us, we have a point from which to start. We can do research, talk to others who have the same thing, and in our case, there are medications that can help.

I'm still pretty new to all of this, but my DH and I were talking last night, and I said that it was good to have the Dx, because now I am able to listen to my body, and to allow myself to rest and not feel like I am a lazy slug. I NEED the rest, and now I don't feel guilty about stopping whatever I am doing when my body tells me it's time to take it easy.

You're going to go through the stages of grief, because your life won't be the same. However, you WILL get through this, and in a few months you will get used to your new "reality". We went through the same thing when our youngest was born with Down syndrome - we were sure that life would never be the same, but a few months later we realized that yes, things had changed, but we had adjusted and just moved on. Time marches on, whether we want it to or not.

You'll find the same thing happens with your diagnosis. You live each day as it comes, and before you know it, you have incorporated your illness into your everyday life and you don't think about it as much. Allow yourself to grieve - otherwise, you'll never be able to move on. And let yourself have a few "pity parties" where you just feel really sorry for yourself! Then pick yourself up, dust yourself off, and get back in the game. There really isn't much that you can "do" about MG - it's a chronic disease that can only be "managed" - except to learn as much as you possibly can and to be ready for whatever might come.

And always, always, ALWAYS remind yourself that it could be a LOT worse - I have an acquaintance who is younger than me, whose kids are younger than mine (one of them has Down syndrome), who is in the end stages of Lou Gehrig's disease. When I think about that, I remind myself that I am extremely lucky to only have MG - at least I will be around for my kids and any future grandkids that we may have.

You're going to get through this, and all of us are here to help you with any questions that you may have. I would be willing to bet that whatever you may be experiencing, there is at least one other person on this forum who has gone through something very similar, and they will be able to give you advice and/or guidance. I know it's scary not knowing what the future may hold, but if you think about it, nobody ever knows what the future may hold, whether they have an illness or not....

Thanks to everyone who has replied. My son is not on cellcept or prednisone so I don't know what to do. It is getting really awful to deal with. His other symptoms are getting worse too though so maybe there is some connection. He is having surgery on Monday for his eye turning in to try to relieve some of the pulling of the muscle that he feels all the time which gives him a terrible headache and nausea. Also, the other day for several days off and on his right pupil was bigger than the other. We took him to the ER but the tests were normal for the brain so no serious issues with that, I hope. It has not done it for a day or so though so hopefully it was some weird thing.

Am amazed.
 

Hello I just joined Neuro Talk this moment. I have been reading posts for a while though. I got my good news in 2007 but went into remission, until middle of this year. The memory loss thing is a big problem for me also. I decided to join this forum simply to say what I think everyone with MG is experienceing. The Doctors look at you when you describe your symptoms like no thats not part of the diseas. Yet when I investigate myself I think many of us have the same symptoms. I find it comforting at least I am not crazy. Thank you all. Question. I'm on the pyra, and the pred anyone else haveing trouble distingushing side affects and actual MG?

Welcome! And thanks for finding this thread - it´s really a super interesting one!

I called 5 children by the wrong names today (though I was quite close to the right answer) my little son laughed his head off completely when I told him to put on his shoes and he knew I was pointing to his gloves. Then I stopped mid sentence over a coffee with a friend and lost the agenda completely I sat there totally lost like a frightened rabbit with startled eyes - not remembering what I had started discussing! Have never had that problem before myasthenic weakness came along, I could always stay on task with my own ideas and even bring the conversation round to topics of those who had been interrupted 5 minutes earlier by another person! I could also retrieve a word for something in 5 different languages without too many problems.

I was quite sure this was a one off the last time round - but it looks more like - here we go again....:(

Anacrusis

PS. I wasn´t on mestinon or any other medication when this happened! And only small normal age realated white lesions on MRI 2 years ago.

Well............I was soooooooo worried about this that I got TESTED -- by a neuro-psychologist -- a couple of years ago. He said that my IQ was INTACT -- but, that I DID have some memory "issues". Couldn't explain WHY -- but, said I did NOT have Alzheimer's or any sort of "progressive" dementia. My neuro had already done extensive bloodwork (to rule out other causes) and had done an MRI. Soooooo, I'm left with memory problems and "no known cause" -- although IN MY HEART (notice I didn't say IN MY BRAIN :D), I feel my memory issues are due to MG. I'm not on prednisone or any other immune-suppressants (known to assault the brain). I don't have any other auto-immunes.

My worst memory problem seems to "reside" in one particular area of my brain.....I'm having difficulty recognizing people and remembering names.

Topamax makes me have trouble "grabbing" words -- but, when I wean off, my word power seems to return.

MG "selectively" attacks various parts of our body. Perhaps it attacks various parts of our memory OR brain??? :confused:

I had severe memory issues that have gotten way better since I started on Mestinon. Memory loss is one of the listed side effects for Gabapenten. I am putting my bet on the Gabapenten being the culprit. I really hope that this is what it is and that you can take him off of it. He needs his brain now so that he can do well in school. I hope he is ok. :hug:

This is actually more about the Gabapentin (sp) that your son is on. Please do some research and talk to your sons Nuero about this drug. It can be very dangerous for myasthenics and can actually cause mg to become present where it had otherwise been dormant. I was on it for a few months to help control my pain, and quickly went into a downward spiral.

I also suffer from memory lapses and loss of communication.
Hope this finds you all strong and well
Jess

[QUOTE=jana;927026]Well............I was soooooooo worried about this that I got TESTED -- by a neuro-psychologist -- a couple of years ago. He said that my IQ was INTACT -- but, that I DID have some memory "issues". Couldn't explain WHY -- but, said I did NOT have Alzheimer's or any sort of "progressive" dementia. My neuro had already done extensive bloodwork (to rule out other causes) and had done an MRI. Soooooo, I'm left with memory problems and "no known cause" -- although IN MY HEART (notice I didn't say IN MY BRAIN :D), I feel my memory issues are due to MG.


Hi Jana,

Wow, I too had a neuro-psych test done because I thought I was getting early-onset Alzheimer's. (Due to the intensity of the testing, I had this test done over a three-day period). And MRI's and lot of other tests......

My neuro-psychologist ALSO said that my IQ was pretty good, but, he did see some definite memory issues.

I can't remember the exact issues (LOL) not intended as a pun......

One of my memory issues was displayed while I was performing a problem solving task; e.g., I analyzed and figured out one model, and the next model was similar yet "different" - think: "same characters, new names". He said I had to figure out the issue all over again - and it took longer to figure out the problem. Doc said I "should have" remembered what I had just figured out.

I forget the other issues he found. (I have a copy of report filed, will look for it).

The neuro-psych doc says there are not many definitive medical articles regarding MG and memory issues - however the ones he found definitely had concluded that many MG patients report AND show some type of verified memory deficits.

I asked him if my fatigue from the long process of testing may have affected the test itself - and my memory?

He smiled at me. And said HE had done the testing and interpretation - but that he thought I really had part of the problem figured out.

On the other hand, my memory waxes and wanes, and can seem impaired even when I have been at rest.

I have problems reading; now if I read novel, for example, I make a cheat-sheet so I don't need to keep "reading back" to remember WHO that a particular character is.

I have problems hearing and retaining (and sometimes understanding) what I have just heard. Now I am a Very Extensive Note-Taker. And I ask questions.

I agree, Jana, in my heart I know MG affects (at least my own) memory. I just don't know why. The doctors and researchers don't know.

And - now, I try not to focus or worry too much about my memory problems.

Unless, of course, I am trying to remember something. :wink:

To erinhermes
 

This is not on the topic here, but just wanted to tell you i am also from San Antonio, Tx.----Hi from FREDH

You just jogged my memory!! One of the tests I took involved numbers. The neuro-psych read out increasingly longer lists of single digit numbers -- and I was supposed to put them in order and repeat them back to him. (Cannot remember what this test was called.) I did HORRIBLE!! And I used to be a MATH TEACHER!! Also, he read stories and then asked me to repeat what I had heard, with as much detail as possible. Also, BOMBED this one. But, I had no problem with the pencil and paper tasks and the manipulation tasks (such as putting tiles in the same pattern as the pictures). Another test involved remembering words. He gave me increasingly greater lists of words. I was ok with the list of 4 or 5 -- it got worse with longer lists. Funny, though, I WAS able to count backwards by threes -- and to subtract two digit numbers in my head. So, my brain isn't total mush. If I hadn't done so well on the IQ portions, I have a feeling he would have told me I DID have Alzheimer's or some kind of progressive dementia.

I had done research on studies involving MG and memory before talking to my neuro about getting tested. It was about six of one, half dozen of another saying that there was a correlation. My MG guy leaned towards the meds (such as prednisone and immune suppressants) causing the memory problems. Since I don't take these, he was reluctant to blame my "stoopidity" on MG. :rolleyes: He's still my favorite doc.

i definitely have memory issues, as litigator need to be quick and sharp so havent been able to do so well in court these days. actually, dont remember if i already posted a reply on this thread (and i am in hospital for past few days working in awkward position so cant really scroll through without losing my place)

i think my issues existed prior to meds but think the issues may be result of combination of actual cognitive deterioration related to MG plus cognitive issues caused by weakness

I wanted to let you know that I was diagnosed about 9 months ago with an autoimmune disease, at first they thought it was CIDP but then I went to USF Health in Tampa for a second opinion and my Dr refined the diagnosis as MG. She immediately placed me on Pyridostigmine, which helped immediately. But that said, I also have memory loss issues, reaching for a commonly used word, or the name of a person, place, or thing I have known for years. Its really frustrating, as my recall has always been spot on, to the point of being scary. I asked my neuro and she says that the problem has to do with my MG as it is an illness that deals with neurotransmitters and neuroreceptors and that we would have to see how things went with the treatments.

I am now on Pyridostigmine, Prednisone and Methotrexate. trying to get weaned off the Prednisone, it is apparent that I am not a good candidate for the prednisone. Lol, the Dr is sure my wife will be very displeased with her if she does not get me off it or at least to the minimal dose possible.

I hope this provides some help.