Hi, Joe. I'm sorry I don't have any suggestions for you. I just wanted to say that the sticky thread ("Your diagnosis, treatment & other information") sometimes gets overlooked because of the format of the forum. You might try posting your question under a new thread (click the "new thread" button on the upper left). There are people here with a lot of general medical knowledge, and someone might have some ideas.

Abby

I've been posting here for a while, but I'm finally responding to this thread. I've only recently been diagnosed with positive modulating antibodies by a Rheumatologist. I know it's not the normal doctor to see, but he's the only one that has dared to treat me.

Many years ago, over ten years, I came out positive for modulating antibodies, but when tested again I was neutral. I was drinking a lot of caffeinated soda at the time so that may have altered the results. Through the years I've had more tests that came back negative - probably because of the caffeine. I no longer drink sodas and now the test is positive again.

The muscles that are affected are my upper eyelids and forehead, the muscle under my tongue, swallowing muscles, neck weakness, trapezius weakness, upper arm weakness, diaphragm weakness, some of these bear down on my spine and rib cage. My upper thighs are also weak. I get double vision too especially after reading for too long. The muscles around my mouth droop often. There's probably other things going on that I can't remember right now.

I just had a lumbar x ray with a few vertebrae into my thoracic to see the damage. I've tried to convince other doctors to check out my spine before and it never happened. At least this Rheumatologist is really trying to help. He specializes in auto-immune diseases, so I think I'm in good hands. My GP sent me to him because she thought I had some other disease relating to Rheumatology. Some of my symptoms sound like Polymyositis and maybe I should ask for an anti-jo antibody test. I'm sure it's possible to have MG and Polymyositis.

Hi
I was hoping you could help. I have been having muscle issues causing
face drop
head drop,
vision issues,
limb muscles weakened,
breathing issues.
Speech dyastheria

I have been in hospital had nerve tests, blood test but neuro consultant said they are clear, but still looks like mg.

Can you tell me if those tests are the only way for a diagnosis or can I ask for something else. These melts are ruining my life and I really want to get to the end of the issues and wondered if you could give any advice?

Starting to think I am going crazy and I am making it happen on purpose.

Any advice will really help.
Thank you
Christine

Hi, Christine. I'm sorry you're having such severe symptoms and that the diagnosis isn't clear.

Can you be more specific about the tests? First the blood tests: MG is caused by antibodies, but there are three different antibodies commonly tested for. The most common of these is the AChR antibodies. Some people who test negative for those have the MuSK or LEMS antibodies. A neurologist should test you for all three. You should also know that a significant number of people with MG test negative at first, and positive later, or sometimes keep testing negative. Do you know if you've been tested for all three kinds of antibodies?

Second, can you describe the nerve test? Do you know if it was just an EMG or a single-fiber EMG? A single-fiber EMG is a lot better for testing for MG. If it was a single-fiber EMG you had, it would be like this: the doctor would insert a needle into your muscle (arm, thigh, or face, usually) and then ask you to clench the muscle slightly for maybe ten seconds or so while the needle stays in.

If you didn't have all three blood tests and a single-fiber EMG, I would suggest finding a neurologist who specializes in the diagnosis of neuromuscular diseases. There are many of us on this forum who have never tested positive for any of the antibodies, and who were diagnosed by single-fiber EMG.

Abby

Hi Christine..
I too experienced a lot of the same issues you do. MY lips get numb at time, my speech sounds like I have been drinking as well as my right eye gets drropy. Since I was diagnosed and placed on Mestinon and Mycophenolate, it seems to have helped. I still have episodes when I get realy tired or stressed or try to chew too much. But no your not going crazy it all seems to be part of the disease.

Ron

I have Congenital Myasthenic Syndrome. It is rare, and even more rarer then
MG. I doctor out of Mayo Clinic for it. Lived the majority of my life thinking I had a form of Muscular Dystrophy until about 6 years ago, when I was diagnosed with CMS. I have been blessed because I was so sick, weaker, had a gtube to feed me, and had full time care. Now I take Albuterol 3 times a day and I no longer have a gtube, no longer need full time care, and I am tons stronger then I was 6 years ago. I have to doctor for this condition at Mayo Clinic. I live in Ohio and noone here knows how to treat it. I would like a sense of community with other MG or CMS patients. I want to hear others stories. I hope I can find that here.

Where i live in florida...they don't know much about MG.... so for my family and friends...and so that I dont have to repeat over and over again to people my story with our disease i made a montage video for everybody to see a little of what i've been through nothing special but people dont understand how hard it is sometimes....search my video on youtube called Myasthenia Gravis (my story)

Hi all, i have just been diagnosed with MG and here is my story.

Around 2 years ago I started seeing badly, and I thought it was just my age, 50, and thought I just needed new glasses. Before I could visit the optician I got sent to Asia on assignment for the whole of last year. I thought the heat was going to kill me, and I was not at peak performance.

Fastforward to this year.

My vision was getting really bad, so bad that I felt unsafe driving, esp. At night as the oncoming cars all had 4 headlights. Decided that now i have to go to the optician for new glasses. He referred me to an eye-specialist. Eye specialist took one look at me, and referred me back to my GP and said she must send me to a neurologist and for CT and MRI scans as I have ptosis and he suspected a tumor pressing on my facial nerve.
It was at that time that I discovered a lump in my neck, and I thought i must've picked up some infection or something in Asia.

Well, got sent for the scans and immediately referred to a ENT. They did a biopsy and said it was a Scwannoma on my vagus nerve, that also presses on the facial nerve and the nerve responsible for swallowing, but that they would wait and see how the tumor grows, as removal would be very risky. Ok, I thought, will just have to get used to this, as there is nothing that can be done right now.

A couple of weeks later I discovered I cannot open my right eye on its own anymore, but I could open it if I open both eyes simultaneously. About a month later, the same happened to my left eye, and a week later, if i close my eyes, it became impossible to open them again without using my fingers. I also stopped breathing when I tried opening my eyes. To breathe again, I must shut everything out of my mind, force myself to relax all my muscles, and then I can breathe again. Back to the ENT departement at the hospital. More tests and then I heard that it has nothing to do with the tumor. Got referred to the neuro and had to wait for more than a month to see her.
In that time I learnt a couple of techniques to open my eyes, without physically opening my eyes with my fingers, like lifting my left arm up, and then suddenly flicking my left index finger, or sticking a clothespin besides my eye. That hurt like hell, but as long as pressure is applied on certain spots around my eyes, I could open them.

Finally I got to see the neuro. She specializes in MG diagnoses and does a lot of research. (The hospital is a university hospital). Whilst waiting for the blood tests to come back, she placed me on Mestinon. 60mg every 5 hours. Finally, after 6 months I dont have to go through ridiculous means of opening my eyes, I can lift my right arm above chest height and still breathe.

I see that the mestinon stops working after 4 hours, so I have to take it then, and I am now on 70mg, as on 60mg my eyes would still fall closed if I lift my right arm.

More appointments and tests with neurologists in the pipeline as soons as the bloodtests come back, but at least I am starting to feel like a functional person again.

Just my bad luck that I got both conditons at the same time, both affects my eyes, swallowing, voice, etc (well, the tumour only affects half of my face, half of my vocal cords, etc).

Had problems since 2008. Been to so many ologists it's not funny. Diagnosed with Lupus Lyme Disease MS SLE Wegeners Lou Gerigs Vasculitis Psoriatic Arthritis Inflammatory polyarteris giant cell arteritis fibromyalgia chronic inflammatory disease ankylosing spondylitis and kidney cancer. So I should be dead by now, right? Not so fast! LOL. That's what happens when the docs don't know what's wrong with me, they throw a diagnosis out and never follow up with me
One even told me "If it was anything serious you'd be dead by now!". Hard to keep smiling when you hear that, but still. Only ones so far the majority have agreed with is fibromyalgia. Still possibility of lupus. However about a month ago had to go to ER because I was so weak I couldn't stand or walk. Breathing was extremely difficult and speaking next to impossible. Pulse was 106..probably from breathing problem. Pain in chest and shoulderblade.Did chest X ray. Sent me home after 6 hours..no diagnosis. Three days later, same thing. In meantime energy level had been at all time low and breathlessness continued along with weakness. Second ER visit same symptoms. Did another chest X ray cat scan of brain. No diagnosis. Sent home after 6 hours again. Seen ENT doc and speech pathologist since then
Both saw me in 'crisis' mode but other than slight bowing and slight thinning of vocal cords, no diagnosis. Referred me to rheumy and voice doc. Not seen them yet. GP did blood test for myasthenia gravis, just came back negative. Still wants me to see neuro doc..got appointment for two days from now. .impressed! Every day more or less the same...energy/weakness varies, breathing/voice problems come and go. Mostly resting helps. Walking any distance wears me out and affects my breathing..get dizzy or struggling to breath. Legs are wobbly, used to be just right side but now left too. Use cane because I tend to stumble. Need wheelchair when we go out-rarely. Live in the South so humidity makes breathing and walking more difficult. Had wheezing episode the other night which progressed to coughing then vomiting/choking. Life kinda sucks. Need my wage but I'm on short term disability so having financial problems too. Some days it's hard to keep going. Well, that's me.

Welcome EnglishSue.