[Katekate]

Hi all,Im new here so I describe my situation.I had double vision fluctuacting and ptosis from 11 years old,but I was Always a little weaker then other kids ,nobody wanted me in the team during sport lessonsWhen I was 20 my eyelid dropped and was weak .First visit at neuro : test desmed and EMG confirmed MG -11%,after SF EMG positive for MG .But my eyelids were crazy somotimes and they spasm when I tried to look up so neuro said there is not MG it's blepharospasm a kind of dystonia...but in the first years of this disease when I looked up my eyelids just dropped ..and were very very weak.Can you tell me if someone have eyelids that go in spasms becouse they were very very weak ?when I try to count up loudly ..my voice become nasal after 30 number and then very very weak ..maybe you know another disease that have these symptoms? if its not MG (diplopia ,ptosis that change every day,bell's phenomen when I look up,my voice change when I try to count up loudly ,and faticable wekness in other muscles? one moment I can be almost normal and in the other Im so misery...Im so sad and I don't know what disease I have.Sorry for a long post.

[AnnieB3]

Hi, Kate, welcome!

Wow, you had positive test results and you still aren't diagnosed? I'm not surprised, but that's just an illogical thought process going on in that doctor's mind. He obviously doesn't have enough information, either.

When muscles get really weak, they can indeed cramp or spasm, especially the ocular and hand muscles. What you really need is a neuro-ophthalmologist who understands "fast-twitch" and "slow-twitch" muscles and can look for specific signs of MG, such as Cogan's lid twitch.

http://emedicine.medscape.com/articl...17-overview#a3

There's also something called "enhanced ptosis," which MG experts know about. If you have a dominantly droopy eyelid and pull up on it for a few seconds, that eyelid will go up and the other one will go down. It creates a "seesaw" effect that can go on for a minute or so.

Does putting a cold washcloth over your spasming eyelid stop it? If so, that's called the "Ice pack test" and is used in diagnosing MG in an ER.

Have you had a brain MRI to rule out other causes for the ptosis?

You have more fatigable weakness than only the ptosis! To rule out MG over some spasming muscles is ridiculous. Athletes' muscles spasm, twitch, and cramp up when they overuse them. A MGer just has that happen sooner.

Are you short of breath at all? Any other symptoms?

Were your antibody tests positive (Acetylcholine or MuSK)?

It's possible that you could have one of the Congenital Myasthenic Syndromes, which most doctors know even less about! It's a group of diseases that are genetic, not autoimmune.

I was like you growing up. I did not have any kind of endurance for sports, even though I had the ability to do them well. I didn't get diagnosed until much later in life. Also, I was misdiagnosed with lazy eye/amblyopia when I was 10. Like anyone else, I instinctively adapted my physical life to reflect my symptoms.

Where do you live? Maybe if you tell us, we can find a MG expert for you to see!

Just because one symptom doesn't "appear" to be part of a disease, that is not a good enough reason to toss out a perfectly sound diagnosis! CMS and MG, and LEMS, are the only diseases that have a "fatigable" component to them, meaning that they cause muscle weakness that fluctuates with a sustained or repetitive activity.

PLEASE call your doctor and tell him to look at either Medscape, Mayo, or WUSTL for more accurate information about MG!!!

http://emedicine.medscape.com/article/1171206-overview

http://www.mayoclinic.org/diseases-c...n/con-20027124

http://neuromuscular.wustl.edu/synmg.html

You obviously need some help, and the appropriate treatment.

I would also suggest that you have your thyroid, B12, and D3 levels checked.

I really hope someone will take this seriously. In the meantime, if you get worse, please go to your local hospital if you can't move, breathe, or swallow well!!

Let us know what else we can do for you!

Annie

[Katekate]

Thank you Ann for answering me.you are so helpfull kind and you know everything about Mg ...So I d like to show you some my pics of ptosis and other symptoms ,because for me is very important your opinion.so I can discuss with neuro..Now I answer your question:

MRI of head :3 times perfect
Antibody ACHR and MUSK negative
hypotiroid with HAshimoto
Muscle biopsy:mild
Respiratory exame :shortness of breath MEP and MIP about 50% of normal ,spirometry ok ,after test with Beta2 mimmetic pulmunologist told I have asthma becouse I improved my respiration after this kind of medication.(but I dont have asthma at all!)
Mestinon helped me a little in the first months then nothing ,sometimes worsened my weakness.
When I had a bad cold and I took drug with ephedrine it helped me so much.So I used it for 2 years but after stopped working so good as earlier.Only this kinds of drugs help me with ptosis and double vision.(stimulants )
Ice pack (my mother made it )one day opened my eyes completly but other day caused more spasming and my eyes closed tightly.
So I think that maybe there is something which causes muscle stiffness sometimes and thats way its so diffucult to see that my general problem is faticable weakness .During the last neuro visit in neuromuscular unit ,2 neuro told that I have total bell's after some twiching for few seconds and my ocular and extraocular muscle are paralysed in this moments ,after about 10-15 minutes they return to basic state...
I will ask during my next neuro exame to controll my strenght after repeating movements ,or counting ..maybe they underestand my real problem..
thank you once more for your help..are they other persons with muscle twiching or spasming and weakness as well?
If its not MG what other disease with faticable weakness double vision ptosis that change every hour can be?

[AnnieB3]

You're welcome, Kate. We all know how rough this process can be.

What does muscle biopsy "mild" mean? They usually give a description of what that means. Do you have your test results? If not, get them.

You really need a doctor who knows about the Congenital Myasthenic Syndromes AND MG. Would you mind saying where you live so we might suggest one for you?

If you have Bell's Palsy, vitamin B12 (in the methylcobalamin form) will help that, along with steroids. Did they even mention treating it, if they think that's what is wrong?!!

There aren't other diseases that cause fatigable muscle weakness.

Does your double vision go away when you close one eye? MG double vision is called "binocular," and when you close one eye, it goes away.

You might not have asthma. Some of the CMSs respond to asthma medication. Have you seen a pulmonologist? If not, see one!

Cold can also make MG worse, so don't use a cold pack on your eyes very often! Anything too cold can also damage nerves.

Careful with ephedrine/stimulants, too! It can adversely affect your heart.

You need an expert, or a team of them, someone who knows the details of MG much better.

I hope you can find someone to help you!!!

Annie

[Katekate]

Originally Posted by AnnieB3

You're welcome, Kate. We all know how rough this process can be.

What does muscle biopsy "mild" mean? They usually give a description of what that means. Do you have your test results? If not, get them.

You really need a doctor who knows about the Congenital Myasthenic Syndromes AND MG. Would you mind saying where you live so we might suggest one for you?

If you have Bell's Palsy, vitamin B12 (in the methylcobalamin form) will help that, along with steroids. Did they even mention treating it, if they think that's what is wrong?!!

There aren't other diseases that cause fatigable muscle weakness.

Does your double vision go away when you close one eye? MG double vision is called "binocular," and when you close one eye, it goes away.

You might not have asthma. Some of the CMSs respond to asthma medication. Have you seen a pulmonologist? If not, see one!

Cold can also make MG worse, so don't use a cold pack on your eyes very often! Anything too cold can also damage nerves.

Careful with ephedrine/stimulants, too! It can adversely affect your heart.

You need an expert, or a team of them, someone who knows the details of MG much better.

I hope you can find someone to help you!!!

Hi all
I had muscle biopsy and the answer was mild myopatic aspecific changes and neuro told it was nothing important.
A have no Bell's Palsy but bilateral Bell's phenomenon .
My double vision was confirmed few times during Hess test .and its binocular as yours.
I didnt know that cold can make myasthenia worse ,it's very interesting.
I live in Italy .I really hope my disease will have a name..becouse live with serious health problem and without right diagnosis is awfull.And pulmonologist told me :you have to be helped becouse your respiration is weak and he told its like myasthenic weakness.
So for me is crazy that somebody tell that is not myasthenia ...

[AnnieB3]

Kate,

There are a couple of Italian doctors on this list you might want t contact. Their emails are listed as well.

Dr. Fulvio Baggi
Dr. Cristina Vatteroni

http://www.miastenie.ro/_files/libra...kletZagreb.pdf

And if you read this, JJ, there's a Dutch expert as well.

Please contact one of them and see what they can do for you! You need some treatment really soon!

Annie