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 Drugs like Gabapentin may need to be withdrawn slowly.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!.....

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.

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 - itīs 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 wasnīt 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 ), 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???

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.

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