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Old 10-13-2012, 01:06 PM #1
Anacrusis Anacrusis is offline
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Default A myasthenic brain

...Of course not!

Nevertheless, as an example, here is what has happened during my worst flare ups on a number of occasions:

Brain function will be totally normal to start a sentence and then deteriorates towards the end of it - Just in the same fatigable pattern as the other limb muscle weakness.

One day I was telling my son that I would be joining him shortly and he should go and wait in the car. By the end of that sentence I could not recall the word for´car´. I would just be standing in front of my car just staring at it and tripping over all sorts of other words like´boat´,´bus´- even the word´cooker´ And no matter how hard I tried I could not find the word that I needed. It was a frightening experience regularly having my young son finish off my sentences for me, especially seeing his concerned face knowing that something was not quite right with his Mum

During a good period I can, at a push, retrieve the word ´car´in 5 different languages.

But this left me totally helpless. Has anyone else had similar?

In just a few weeks time I will be an observer at a live brain scan on a´healthy´ subject at the biomedical imaging center of a brain research institute.
It would have been just as interesting, I think, to be able to compare a live brain scan of a patient with autoimmune illness performing a task during a flare up and another scan of the same patient doing the same task but whilst asymptomatic.
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Old 10-13-2012, 02:07 PM #2
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I have episodes exactly like this, but don't really have any diagnosis right now other than muscle weakness. Here's a fancy word for you to forget during these times: Anomic Aphasia. I think it can be caused by many different things. A friend of mine gets it really bad whenever her thyroid numbers are off.

Here's something to consider, though. Huperzine A is an acetylcholinesterase inhibitor, and it is being investigated as a treatment for Alzheimer's. There does seem to be a connection between acetylcholine and brain function.
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Old 10-14-2012, 03:22 AM #3
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Originally Posted by Geode View Post
I have episodes exactly like this, but don't really have any diagnosis right now other than muscle weakness. Here's a fancy word for you to forget during these times: Anomic Aphasia. I think it can be caused by many different things. A friend of mine gets it really bad whenever her thyroid numbers are off.

Here's something to consider, though. Huperzine A is an acetylcholinesterase inhibitor, and it is being investigated as a treatment for Alzheimer's. There does seem to be a connection between acetylcholine and brain function.
Thanks Geode for those great pointers!

I googled that and it brought me right back here with this:

http://neurotalk.psychcentral.com/thread104623.html

Does yours go hand in hand with flare ups? Do you see an improvement with any medication?

Alzheimers is the first thing I thought of ….but then all the other things don´t fit.

Anyway it seemed way way scarier to struggle with diminished brain functioning whilst thinking than it was to struggle with fatiguing limbs whilst doing a task.
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Old 10-14-2012, 07:22 AM #4
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My brain went totally wacko when my MG started. I had some major cognitive dysfunction. My neurologist seems to think that it was due to some medications. I have improved tremendously. I still have the sneaky suspicion that I am a bit insane.
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Old 10-14-2012, 10:47 AM #5
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Does yours go hand in hand with flare ups? Do you see an improvement with any medication?
Absolutely, my cognitive difficulties completely coincide with my physical weakness. I used to teach music to 800 school kids, and made it a special point to know and use their names so they would know I cared about each and every one of them.

On a good day, I could teach 5 sections of folk dancing without any problems, and could also come up with any kid's name in 2 seconds. On a bad day, I would get severely winded just walking down the hall to the office, and when the kids raised their hands, I couldn't call on them by name. "Ok, um, um, um, (point) YOU-" On those bad days, I also struggled just to teach the classes. If you could call it teaching at all. It was horrible.

For me, it's not a matter of winding down at the end of a sentence; it's specifically names of things that I can't recall. Pronouns, verbs, prepositions, etc. all come flying out of my brain/mouth, but the nouns are just absent. In your example of telling your son to go to the car, I would have had the EXACT same problem, but not because the word "car" was at the end of the sentence. The difficult words do often fall at the end of the sentences, though.

I have not found a medication yet that helps. For comparison sake, I will reiterate that I do not have an MG diagnosis. I have never tested positive for any antibodies, have had no abnormal EMG results, and Mestinon didn't work for me. I do have intermittent ptosis, fatigueable weakness, and a positive ice pack test, but please don't use my experience as a basis to conclude that MG does this.
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Old 10-14-2012, 12:40 PM #6
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I wonder if their could be a totally different thing that attacks acetylcholine at some different level causing cognitive dysfunction as well as muscle weakness. I am radically better cognitively speaking; I don't think I am where I was before all this started. I am seronegative. Mestinon has helped.
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Old 10-14-2012, 12:47 PM #7
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I don´t have positive tests either and that´s why you´ll find I haven´t specifically stated´MG´in my post - and usually don´t when referring to my own symptoms. So thanks for writing and sharing this really interesting account, Geode.

One thing I do know is that after 2 years of chronic fatigue some years ago, cognitive dysfunction was very generalized, just like the condition itself. Once I was cured of it I noticed my brain was extremely hungry for stimulation so I would read tons of neurobiology books a week, play complicated piano music - almost as if the brain was starving for exercise. I also feel that my brain is now razor sharp compared to what it was even before the CFS started.

The cognitive episodes that I had recently mirror the exact same type of muscle weakness that is occurring this time round – it could of course just be one great big coincidence......

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I still have the sneaky suspicion that I am a bit insane.
Hey Celeste! I think you can not pronounce yourself insane until thousands of doctors and neurologists do so first!!!! ...... ... ... ...
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Old 10-14-2012, 12:53 PM #8
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Well if you suggest you are wacko, they never agree............
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Old 10-15-2012, 09:02 AM #9
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YES!!!!!

I used to be so smart.....

I do think that they will eventually discover that Alzheimer's is also an auto-immune disease. Interestingly enough, a not insignificant number of people with AD are found to also have Celiac Disease/Gluten Sensitivity (there is also a higher incidence of undiagnosed CD in people with Diabetes and Rheumatoid Arthritis).

I've also wondered if the low-dose steroids are interfering with my memory - of course, I didn't start taking them until after the MG diagnosis....
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Old 10-15-2012, 10:39 AM #10
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I had serious memory issues when all this started. My husband would walk into the room and it would frighten me to death because I had no memory of him walking in. To me, he magically appeared in front of me. I was told that it was some type of dissociation disorder (AKA crazy as the outhouse rat).

I also was making bad decisions that could have cost me my marriage, my job, and my financial stability in general. My husband caught the financial errors and fixed them.

Yet in all that, I never missed work. I had outstanding work reviews. (I am suspicious that my supervisor is so nice that she gives everybody perfect reviews so that she doesn't hurt our feelings.)

Now my memory is MUCH better. I am not misplacing moments in time. In fact, I have learned a bunch of new complex guitar chords that I could never play before. I also wrote an original lab for my class, sent a link to it to a major textbook publisher, and they may include it in a text book.

My muscle weakness has gotten worse. I am off of work today. I just spent some time outside taking care of the horses and I was gasping for breath when I got inside. Dang it.
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