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.

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.

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.

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.

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.

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......

Hey Celeste! I think you can not pronounce yourself insane until thousands of doctors and neurologists do so first!!!! ...:Crazy 2:... :Crazy 2:... :Crazy 2:... :Crazy 2:... :Crazy 2:

Well if you suggest you are wacko, they never agree............

Heee heee!!! You know I meant that they are way in front of you in the line!!!!

But there´s definitely a fine art in transactions with a visit to a doctor´s office. I think I´m getting the hang of it now....

My doc thought it was truly fascinating that Mestinon was working like it was.....until....the SFEMG turned out negative - then it wasn´t quite so exciting anymore........

And just another thought.....you wouldn´t survive a minute being a psychosomatic of any kind whatsoever during a diagnostic process like the MG one..... :wink:

YES!!!!!

I used to be so smart..... :D

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....

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.

So sorry, Celeste :(.......

Do you know reading your posts inspired me to ride a horse for the first time ever.... :heartthrob:

My doctor just kind of gave up on my case and couldn´t give me the MG diagnosis he really wanted to because of the negative SFEMG -
So that must mean I am ´healthy´.......
Well at least most certainly -´eligible´.....:wink:

They were looking for someone from our group for this brain scan and so I just went ahead and volunteered myself for it :yahoo:

If it gives you some hope, the person who sent me an abstract from a conference describing a few patients with MuSK antibodies and normal SFEMG, was no other than the same neurologist who told me a few years earlier that it is impossible to have MG with a normal SFEMG.

In fact, I believe our discussions eventually led to both of us having a better understanding of this disease. :)

That is really quite something :Clever:....

I suppose I should give my doctor some credit since I managed to convince him to keep on prescribing me the Mestinon.
He did also think that the SFEMG practitioner was referring me directly to an MG specialist at the hospital because
´It was quite possible she could have made some errors with the SFEMG test´.........

Yes....well.....hmmmmm.....that could mean a lot of different things!

This neurologist (which I nicknamed at some point-SFEMG neuro.) is one of the best EMGist. So, when he failed to demonstrate my NMJ transmission deficit, there was no one else he could send me to. :(

In fact I did have a very diagnostic SFEMG by someone else, but I didn't trust those results. I much more trusted his. ( I always wanted to know the truth not have some artifact test result) .

Clinically, he was sure I had MG and even treated me for it. But, he never felt comfortable about this diagnosis and constantly questioned it because of my relatively unusual clinical course (and response to treatment), negative antibodies (my MUSK antibodies were found later) and repeatedly normal EMGs.

He made every possible effort (including coming late in the evening) to obtain a diagnostic EMG. He even did an RNS of my diaphragm (as my most prominent symptoms were respiratory). I can understand that it was very hard for him to accept the fact that this test he was so proud of being so skilled in (and no doubt that he is) was not as infallible as he was made to think.

I do give him a lot of credit for being ready to discuss it. (we had numerous e-mails in which I patiently made my point and he made his and like I said I think we both learned from it. I definitely did).

I also give him a lot of credit for sending me that abstract, which showed that possibly I was correct. (even though he is an MG expert and I am just a patient).

I forgive him for deciding at some point that there is nothing more he can do for me and letting me deal on my own with severe respiratory difficulties while telling my pulmonologists (who fortunately seriously questioned it) that there is nothing physically wrong with me.

Can you say more about what you mean by this?

When my SFEMG practitioner had to refer to the manual during deltoid RNS I was a little surprised - but yet I did trust the results of her SFEMG by all the other signals that were given off during our 4 hours together.

Everyone has to perform their first SFEMG and it shouldn´t be impossible to get it right! (I think she had done a number of them)

About "brain issues" in MG:

http://www.ncbi.nlm.nih.gov/pubmed/11166079

Note that the first line says, "Most individuals with myasthenia gravis (MG) complain of cognitive impairment........."

I definitely notice a difference in my ability to think and remember.............even when I'm NOT on Topamax for migraines. ;) When ALSO on Topamax, I'm dumber than dirt. :(

Just in case you are wondering, I'm currently a certified idiot.

Fortunately, I only have cognitive impairment when my breathing problems are out of control (my brain seems to be unhappy with increased CO2 levels and also with inadequate sleep).

Most of the time (with respiratory support if required) my cognition seems to be fine. ( I wouldn't take responsibility for the life and well-being of other people if it weren't so).

what I mean by this is that this is a very operator dependent test. you can very easily get wrong results (either positive or negative) if you don't do it correctly/ don't interpret it correctly.

I found it unreasonable that after my neurologist tested me numerous times and always got no jitter, this person (who I could see was less proficient) got impressive numbers in every muscle she tested.

At some point I thought that maybe my NMJ is sensitive to pain. (he did it in a very gentle way, which was at the most slightly uncomfortable and she did it quite the opposite). But, this didn't make much sense either.

I eventually showed it to an EMGist in a large MG center and he just nodded his head. My neurologist said to me about her (in his very gentle way)-well, I think she is a very good and nice person, but I think it is better than people don't do what they don't know much about. (translated to less gentle language-her results are crap).

Too cool! So did you have fun?

Alice, I was reading up on ACh receptors and I believe it said that ACH receptors were primary for skeletal muscle which we feel as our muscular weakness but also there was a smaller amount of Ach receptors for smooth muscle in the gut, gland secretion as well as in the (memory area) brain. So should it follow that MG might cause digestive and cognitive issues as well? Since it affects glandular secretions, is this why so many of us also have thyroid issues? I had a thyroid tumor removed several years ago.

Let me know what you think,
kathie

There are different types of Achetyl choline receptors and also the effect of acetyl-choline is local. In classical MG there are antibodies which are directed against the AchR of the muscle specifically.
But, in some patients there are also antibodies directed against receptors in the autonomic nervous system.
I am not aware of antibodies directed at the AchR of the brain. But everything is possible.

I think the reason for the cognitive issues in MG is that the brain becomes preoccupied with how to perform simple daily tasks and therefore less capable of performing other functions.
If you have to "think" of how to breath, eat, drink, walk, read, write, pick up an object etc. you have less "thinking power" for other things.

I know that since I have MG, I am not capable of multi-tasking. I can either walk, or talk or think. Also, people who work with me have to adjust to my pace and not the other way around.

Putting cognitive function in perspective.

I think I can summarize my own experiences roughly like this:

• Cognitive dysfunction during chronic fatigue – 100% over a 2 year period

• Cognitive dysfunction during hypoglycemia - under 10% over a 2 year period

• Cognitive dysfunction during myasthenic muscle weakness – under 5% over the last 4 year period


Am grateful for all the interesting comments including those coming from a medication perspective as well.

Alice

Thank you for sharing this – it is also very inspiring for people to read this who want to let go and move forwards – there´s already more than enough to be getting along with when you first have a disease.

Celeste

The horseriding was a surprisingly fabulous experience on many different levels!

I had to allow my gut to take over when the brain no longer knew what the heck to do with a horse that was starting to slide down a steep muddy embankment. It´s the first time I´ve ridden a horse and also the first time I´ve ever had to put my trust in an animal.
I had to stop riding earlier than the rest of the group but I now have a little dream that for one single day......
I´ll find a wide open space somewhere in America and then just....ride like the wind :rocket: :hug:

There is something magical about uniting your mind and emotions with those of a horse.

Just adding these to this thread as well….

http://m.medicalxpress.com/news/2012...rder-loss.html

http://www.dailystrength.org/c/Myast...ple-smell-less

Thanks Mike, Brian and Teresa :)

Without a doubt, i can not multi-task as i used to. In fact, for at least a couple years now i cannot have the radio on when driving as i need silence to focus on task itself. Fortunately i do not drive very much (only about 250 miles per month) but it is definitely something i have noticed.

To southblues
 

Well Celeste, my experience is similar to yours with the horses...had hoped to be able to get back in that saddle again, but so far can't even get them legged up..weather is better now, but my weakness is so much worse it doesn't look like this'll work...& even just going to the barn & feeding them, my dypsnea is worse, still trying.....

Dottie

Hi Steph

Do you mind me asking if the GBS you suffered from gave you any cognitive symptoms whatsoever?
If so, what were they like and was there a complete resolution?

I have periods of being unable to multi-task with processing sound -
And I have no idea where all that´s coming from!

Anacrusis

I can't really get on the horse easily. I use a mounting block and I do fine. When I fell off several miles from the house, I was able to find a nice ditch to stand her in. It did take some convincing to make her understand that I wanted her to walk into a hole........

I did not know about these effects!

http://link.springer.com/article/10....017-011-8165-7

No cognitive effect from GBS at time or residual

´Cognitive improvement during fluctuating diseases´
 

Although I had some word finding difficulties, I remember a long stretch of progressive myasthenic weakness in a classical pattern over a two year perod. Like some of you, by 4.30 p.m. I may have been falling into my dinner plate with weakened trunk muscles, could not chew my food or keep my voice in from becoming dysarthic. Yet nevertheless, I could, at the exact same time, speed read my neurobiology books equally well - no matter what time of day it was and regardless of the diurnal fluctuations the other muscles were having. That discrepancy was always there. Like any myasthenic, when you are constantly negotiating fluctuations in muscle strength and using strategizing techniques on a daily basis to impact task function - it might end up working both ways. But for me at that particular time, the effects were positive. So whilst other muscles may not be listening, your brain might just be getting the work out of a lifetime you otherwise never would have had.

Anacrusis

I just had a live brain scan!
 

My brain was the brain used for the live brain scan I mentioned earlier in this post (reason: little bit of luck and a lot of will power) :yahoo:

It was exciting to be part of a research project that by default also gave me some interesting insights.

With one neuroscientist, a researcher, a technician and a number of observers present -
I can safely say that during the act of thinking I have a brain that is far from myasthenic (In fact - quite the contrary!!!)

After starting out with 2 years of severe M.E. cognitive brain fog dysfunction some years ago these are interesting results!
And wonderful, I get to keep a recording of the live scan itself :)

Life is not boring......

Anacrusis

Wow that's cool.

Isn't it?!!!

32 pictures of brain every 32 seconds - I may have enough for an album!!!

Seeing your brain appear before you in 3D is really quite the experience :wink:

I have brain impairment too. and there is one study that was done on brain impairment and Prostigmine. Prostigmine crosses the blood brain barrier. Patients were tested before and after taking Prostigmine and the majority showed marked improvment.

I started taking Prostigmine after reading that study and had real improvement in mental functioning. Too bad it fell victim to the Safe and Effective law. You can order it from Canadian pharmacies, but it's illegal in the US.

As always talk to your doctor to see if it's okay for you before you try a new drug.

But I think that study proves we are having cognitive problems. Can't remember the exact journal issue. I suppose I can go dig it up should anyone care to read it.

I am interested in any studies that show a relationship between cognitive function and MG.

Anacrusis
How fascinating this subject is I went three years before my MG fog started I call it that as that's what I think it is and how horrid it was it kind of destroyed my confidence the Dr did a basic memory test so stupid it was I still got the wrong day thou mine was always after pushing myself I would become confused didn't know simple things what hurt was would cook the total wrong food not able to do the most simple thing thinking I was seriously becoming crazy seems a lot of us also have had the symptoms
Alan

As a previous M.E. sufferer I am interested in this:

´There are two types of brain scan – a straight MRI scan which looks at the structure of the brain and functional SPECT scans which look at where there is activity in the brain. What was so fascinating about the many SPECT scans of M.E. patients’ brains that Dr Hyde showed us is that these scans appear to have great holes in them. That is to say, at any one moment there may be a large area of the brain that is completely non-functioning. Similar brain scans have been found in farmers with organophosphate poisoning and also with veterans of the Gulf War´

And this:

´So I’m suggesting that these large non-functioning areas of the brain may be caused by local mitochondrial failure, meaning there is simply no energy supply for those areas of the brain to function. They shut down and do the bare minimum, but no more. This begs the question as to why mitochondria shut down, and we now know there are lots of reasons for this. For instance, it can occur as a protective reflex against overwhelming viral stress, or in response to high insulin levels (secondary to high carbohydrate diets); it may be in response to damage from free radicals and cytokines, (the chemicals in the body which help fight infections), and certainly mitochondria can be directly poisoned by heavy metals, pesticides, carbon monoxide exposure and so on´

Taken from here:

http://www.actionforme.org.uk/get-in...d-by-brain-fog

One article read in M.E you forget where you put your keys but in Alzheimers you forget how to use your keys. Well all the more reason for me to celebrate that those particular Alzheimer-like symptoms I had have been reversed!


I did find one fmri imaging test for Myasthenia Gravis and this reference originating from 1916 was ´intriguing´ - at least to me!!!:....´Associations between MG and psychosis and epilepsy have been noted for over 90 years´

Taken from here:

http://ww4.aievolution.com/hbm1201/i...ewAbs&abs=4770

With my own experiences of general fatigue and later specific myasthenic muscle fatigue cognitive dysfunction played almost a 100% role in M.E but only approximately 5% in M.G so have more connections with the former. I would still be very interested to see live brain scanning showing what parts of the brain are temporarily affected during various fatigable muscle weakness tasks in MG in comparison to a group of healthy subjects.



PS Alan - As someone with suspected MG I always find other people´s experiences interesting as well...

http://www.dailystrength.org/c/Myast...y-brain/page-3