I would like to share 2 samples of fatigable handwriting in the forum because it reflects to some degree what´s gone on but in a visual way. (If these bitmap attachments are too small to read I´ll resend!) ....I´ve heard it could also be writer´s cramp. Nevertheless the writing is 100% better than last year when I was at my worst and could not grasp a pen and apply pressure to sign my name. (Nor could I thread a needle, tie a shoelace, turn pages of a book, squeeze toothpaste etc.) ......In my opinion a lot of physical examinations of weakness are on the right track but stop a little bit short of fatigable weakness.

Most of the bulbar symptoms I did have ended up getting much worse when I changed to a new type of sedative and then in January the symptoms went into a nice clean remission 2 weeks after quitting all sedatives for good. Just lately though there are some distant myasthenic rumblings going on in the same terrains as before. I´m starting coughing in the evenings again and for a few hours saliva feels like its leaking the wrong way and now I take no medication whatsoever.

A very new symptom….my eyes have been going in and out of focus and blurring and one time double vision (vertical) of signs on the road whilst driving on a warm day and I´ve never had problems with distance vision. Exercise and heat especially give focusing problems which are resolved immediately with cold exposure. (I saw MS when I looked that up but have had a brain and spine MRI.)

2 blood tests for MG taken during remission in October were negative as was an RNS and thyoma scan. I am seeing my new doctor on the 24th and wonder if I should ask to be referred for any more tests or are these symptoms too mild? Where I live you kind of have to cue 6 months for neurologists´ appointments, and then one negative test means you have to take a break from cuing altogether which is really fine if there´s nothing wrong.

Attached Images

	Handwriting 1.jpg (7.3 KB, 106 views)
	Handwriting 2.jpg (6.7 KB, 103 views)

I don't envy you trying to get care in Europe. You aren't in the UK by any chance, are you?

As for the handwriting, I can see neurologists rolling their eyes if you brought that up to them! When muscles get weak, they do "cramp." I do know that my handwriting, which I hardly do anymore, is horrid. It does "fatigue" like you showed in those pics.

Have you been diagnosed with MG?

Do you have ptosis, which is eyelid drooping but you can also have your eyebrows, nose and the rest of your face droop too.

If you can get referred to a neuro-ophthalmologist, they can asses your eyelid muscles for ptosis and whether or not it's fatigable.

You can have an EMG or a Single Fiber EMG done. The Acetylcholine Receptor Antibody Test and the MuSK Antibody test should be done.

If you get to the point of not being able to swallow, you can't move well or you can't breathe well, that's the time to go to the emergency room. Don't drive there yourself!

I hope you can get some answers soon. Take it easy until then because if you do have MG, it can get so much worse if you do too much.

Annie

[QUOTE=AnnieB3;880749]I don't envy you trying to get care in Europe. You aren't in the UK by any chance, are you?

Have you been diagnosed with MG?

If you get to the point of not being able to swallow, you can't move well or you can't breathe well, that's the time to go to the emergency room. Don't drive there yourself!

Thanks Annie......I don´t live in Europe but not too far away I have a diagnosis from another country even without any positive tests. This diagnosis doesn´t count in the country where I live so I get problems with´disability´payments...I am struggling to work 60% and I am supposed to be in remission! Private neuros are almost non existant here...

Yes a few days ago I had trouble swallowing then the breathing problems from last year started up again and it got progressively harder in evenings and I had to focus my conscious attention on doing it. By Sunday in the early hours I woke up and noticed I wasn´t breathing at all. But it went over.

Yesterday I noticed trouble with driving (holding clutch down and arms slipping off the wheel) Had to lay down on the floor of my office 4 times today to rejuvenate the trunk muscles as they were extinguishing themselves at lightning speed....Am not really a ptosis kind of person. Anyway hope I´m not coming back to myasthenia after a whole year of 99% remission.

(Have all negative tests except not taken SFEMG)

Thanks for your kind words and suggestions, Annie.

Anacrusis

This was also a new symptom/sensation regarding difficulty breathing a couple of days ago........

It felt like either the lungs themselves or the muscles used for breathing had lost their elasticity and both diaphragm AND epiglottis areas stiffened for quite a number of hours. Today I feel fine - just weak coughing every now and again on saliva... and tomorrow first visit to my new doctor who wanted to research all my notes over 5 weeks so we´ll see what he has say.......

What did doc say...esp about breathing issues?

Hi suev,

Hope you are having a nice day.

My new doc didn´t say so much about the breathing problems. I did not present with any that early in the day.

(I had been more worried about choking on thin liquids, and even worse on vapors)
He will refer me for a SFEMG which would take about 6 months and that if results are negative then he would go ahead and treat whatever myasthenic symptoms may arise......

A.

6 months for a SFEMG...that's a long time!

So, be very careful through hot summer. If you do have MG, getting overheated (or overstressed for that matter) really makes MG worse. Take care.

It took a long time to realize that I was going round in circles myself and even being caught between them! A few months ago I set out to find a straight and direct line out….. I was semi diagnosed abroad with myasthenia but there wasn´t much mileage with that diagnosis here in my own country and that caused all sorts of problems.

I ended up finding a new doctor (only 10 mins from my house) who is AMAZING!!!!!!! First of all, he is only a general practitioner but is quite supportive to the fact that I may be negative in all the tests and still have myasthenia and he is willing to work with me on this.
He not only has a good attitude but he also referred me DIRECTLY to the university hospital´s neurophysiological laboratory for RNS, EMG, and SFEMG testing in just 2 months time (I didn´t know they could just bypass the neurologists like that!)

Got the letter in the post just 2 minutes ago and though the tests I think are kind of a few years late in coming, getting them is a milestone in itself.

Thanks for everyone´s help so far – the forum is great for info, support and in my case staying grounded!

Happy Summer everyone

And just in case you are still reading, Annie, this one is for you