First of all, I think that people who are very sick can elude the testing which is contingent on the convenience of the neuros' calendars and timelines. I have never been able to be seen when I was at my sickest and most desperate, and frankly I find the whole business appalling and absurd.

When I arrived here I was not as sick. I was still trying to run once I started taking steroids. I ran two marathons, though I was very sick doing so. I would have intermittent ptosis and diplopia depending on what I had been doing. My tests have always been negative, except one suspicious repstim. I got progressively sicker but tests have not been repeated. I had magic response to Mestinon and ice test worked at home. My arms are too tired to continue typing, but be all over mild symptoms. You can get much sicker if you are denied aggressive treatment.

What are your symptoms, how long have you had them, and how did they come to your attention.

I am very new to MG. I believe I am a mild case.
3 years ago I had a heart attack at 45 and had 2 stints put in.

In April of this year I started having intermittent double vision.

My optiomitrist said, needed new prescription, nothing wrong.
A month later I was having bouts of slurred speech.
I couldn't accept that it would suddenly do that and be intermittent.
I went to an ophthalmologist and he fitted me with prism glasses. Advised me to see a neurologist.
I saw my cardiologist to make sure it wasn't circulatory or my prescriptions.
I went to my family doctor and had him set up an MRI. That was bad for me mentally. I found out how claustrophobic I am and was thrown into a bad anxiety panic cycle.
Imaging center and family doc said nothing to worry about on the MRI.
I went into a mental/emotional crises trying to find out why.
The worst things went through my head. Tumour, cancer, some sort of brain disorder. I Shortly the after I started having to concentrate on swallowing.
I went to a ear nose throat doctor to check my sinuses. Everyone was saying all ok.
So I thought all I needed to do was address my fears with a therapist and I could cope.
I did go to a neurologist just to be safe and everything was ok there. He said he would do one last blood test to be sure but thought it would be good.
On a Friday I got a letter from lab saying test was clean. I was happy to go ahead with my therapy and get beyond this.
Following Tuesday I get a call from nurse saying that there was more than one test in that blood draw and it came back positive for MG. She said don't look it up you will just scare yourself and we caught it in time, it is very treatable. We will see you in a month to talk about it.

Me being me had to research and fuelled my already worried state. I went to my family doc and got him to get me on prednisone and mestinon. I started looking for specialist to be referred to.

I called my neurologist office and eventually talk to his nurse. She moved up my appointment to the next day because of my panic and I had a good visit with my doc.

For me this is not the end of my world, but it is drastic and my rational mind is still trying to work it out with my emotional mind.

Stress aggravates this as does heat and cold extremes. Overdoing it also.
Yes it is big and scary when it is your body doing it to you. It is ok and natural to feel these emotions. They are emotions and must be delt with. Find a good support. Family, friends, professionals. Use anyone you can to let go and feel the stress. Scream to the world "IT IS NOT FAIR" it is ok because it is extremely personal to you. Be selfish for now. Strength and hope can come no mater what your diagnosis. Fight for your self and dump anyone who won't fight by your side. Don't hold it and let it eat you up.
I am sitting with my wife right now crying my head of as I write my story down. It is ok. Let it out.
Craig.

I forget, Eve.
Have you had blood drawn, to determine if you are seropositive?(... having antibodies that attack your ACh Receptors, in the nerve-synapse ...)
I was first diagnosed with MG, 7 or 8 years ago.
For the first 6 or 7 years?
My MG - was just like - what you are describing as ''mild'' MG.
I had several autoimmune problems, but one of the biggest problems was mild-to-moderate, generalized muscle weakness.
That sort of thing - is not unusual.

Which is not to say that mild-to-moderate, generalized muscle weakness - is fun.

Mild symptoms or not: watch your symptoms carefully, and head for the Neurologist, when you think you are seeing your symptoms, take a turn for the worse.
If you keep an eye on your symptoms, you can do very well - at managing your MG.

I made a big mistake.
I did not watch my symptoms carefully.
And I repeatedly overexerted myself, physically, during the height of summer heat & humidity.

Worsening symptoms snuck up on me, slowly but steadily, over the last 2 months of summer, last year.
By then? My nerve-receptors were so damaged, from antibody attack?
Then came 2-days of steadily increasing, severe symptoms - that resulted in hospitalization.

If I'd been paying better attention?
Maybe none of this - would have ever happened.
All water over the dam, now.

Are you anxious? Of course you are.
That's natural and normal and completely human.
(You shoulda seen me!)
Best wishes - Ross

PS to Craig: Way to go!
Get this crappy MG anxiety - out of your system. Then - go easy on yourself. Don't stress too much. You're right - the stress & anxiety, caused by MG - or any chronic disease? It only exacerbates any symptoms that are going on. How do I know? Well ... you know ... been there.
And - Wish I could do it all over again, doing things differently.
But ... oh well ... now I know better.
Thanks to a lot of fine people here, who helped me!

Hi Eve,

Please, never apologize for suffering. It is what it is, regardless of all the others who suffer too. We're simply all in the same boat, one way or another.

It will be two years next November since I was diagnosed with MG. At first it effected my speech. Later my swallowing and chewing, then it was fatigue -the kind where you have to stay in bed and rest.

While that probably sounds a little scary, it came on gradually. But I have found that if are patient its possible to find a kind of rhythm, at least it seems to help me. Learn to take symptoms each in their turn, if possible.

When you begin to feel weakness or fatigue in the afflicted part of your body, try to think about what will immediately help, can't swallow or chew, start eating things that are soft and easy to swallow. If you are having trouble talking, let your voice mail handle calls for a while. If you must speak, tell people you can't talk right now. If you feel fatigued, go an lay down right away. Sometimes, even a short rest may be really helpful.

Above all, don't try to be strong when you're not. You can let people know you have a medical problem and can't do or say what they want you to at the time. People will understand, and if they don't they're not very good friends, so say good-bye and don't worry.

Keep in mind there are a number of good doctors and treatments available. Choose carefully. It will take a little time but most people will find their way. And the dance goes on.

Best wishes, Bob

I have had symptoms of MG for about 20 years. Slow gradual fatigue and muscle weakness got worse. About a year ago I couldn't use my arms or legs and sometimes my facial muscels were effected. I missed a lot of work, but I work every day now. I have a low stress desk job. I have generalized MG. Mostly affects my arms and legs. I haven't had trouble swollowing or breathing, except when i was taking too much mestinon. We are all different with different symptoms and treatments. Make sure you see a neuro who understands MG. I am sorry you are struggleing. I am rambling here. Sorry. I am seronegative. I did hhave an SFEMG done by a specialist and he gave me a dx from the test, but I barely got it because my symptoms are borderline. My nuero DX me last fall just by my symptoms and my postive reaction to mestionon. Best of Luck to you. We are here for you. Please ask whatever you need to. Barbel

I also am a newbie with what I see as mild symptoms compared to most of the wonderful snowflakes here. At the end of April. I suddenly couldn't see straight. My vision was double... Well, to describe it more clearly I say smeared. For example. If I was gazing into the distance at two towers approximately fifty feet apart on separate buildings, they would quickly merge two towers stacked mostly on top of each other.if I then closed either eye, the one tower would leap back into its real position and the image would be crystal clear. I thought it was a visual acuity problem at first (before I noticed my "tower phenomenon"). I made an appointment with my ophthalmologist, whom I normally see at least every six months because I have keratoconus, a degenerative cornea disease. The eye exam revealed acuity corrected to 20/20 with my keratoconus contacts in, but "abnormal neurological exam".

They had me scheduled to see a neuroopthalmologist right away, as one eye at a time was crossing. The doc saw the crossing, and was able to compensate by placing a prism lens on the eye of my choosing, as it didn't matter which was corrected. The prism sucked and made me dizzy, but as my face was getting sliced to pieces by continually wearing my eye patch, it provided some relief. I switched back and forth while waiting for a load of test results to come back.... All negative. They tested my blood for Lyme disease, multiple sclerosis, syphilis, antibodies for MG, plus the MUSK antibodies. Negative, negative, negative. I had a head MRI to look for MS lesions and a chest MRI to look for a thymoma. Both negative.

The neurologist did a single muscle fiber EMG, which he said was abnormal. He said it wasn't a slam dunk diagnosis, but he decided it was myasthenia based on jitter during the test. He also cut my test a little short because I had silent tears streaming the whole time from pain (it was an ocular test). I told him no, keep going, that I would put up with it... He told me no, he was stopping because he had "more than enough" info to see what was happening.

I was started on 30mg mestinon 3 times per day, and increased within 1 month to 90mg 4 times per day. Then one day I was working in a very long case, mostly sitting and staring at a bunch of monitors, with intermittent activity. I had woken that morning feeling as if my tongue and lips were shellacked with peanut butter. I couldn't hear any difference in my voice but I felt slow. I carried on working my 10 hour shift, and by the end of the day 3 different people commented that my voice sounded funny. The third person told me I sounded drunk. Stupidly, since I was tired and wanted to go home and sleep, I started driving the 30 min home. I called the neurologist on call for the hospital 15 min into the drive because I felt like crap. He heard my voice and had me pull a U-y and return to be hospital. I stayed a couple nights with slurred speech off and on, and one short and scary period of not being able to swallow effectively. They upped the mestinon to 120 mg 4 times per day, and let me go home on my 10 year anniversary. We were told to stay close to the hospital, so we cancelled our long-planned Niagara Falls weekend.

They got me on for IVIG infusions 10 days post discharge. Throughout that time the vision was awful and I slurred off and on each day, usually in the morning. My daughter (3yo) was frustrated with me because I was having trouble reading books to her and her brother. I got the IVIG, 5 days in a row as an outpatient. Eightish days later my vision cleared and my speech was normal. I kept taking he mestinon but came down to 90 mg 3 times per day with 180 mg at night by extended release tablet.

Three weeks later I had trouble with leg strength at the end of a long day, and my vision was smeared/stacked again. I just finished a second week of IVIG, and I'm waiting for it to work.

I hope this long-winded story helps you become less "unsure", but I realize it could do the opposite. I don't have any good answers for you, unfortunately. I am "mild" and scared and frustrated, just like you. Please feel free to write to me and vent anytime. Don't feel bad comparing yourself to others here. I struggled with that for awhile, but I'm starting to realize that we all lie along the spectrum of this disease, and can all fluctuate from mild to severe to mild, or remain the same. No one looks down at me for being so scared and depressed, even though I can walk around and carry out my ADLs without a huge struggle... Yet. We all cry for each others' difficulties and woes, and cheer for say others' good fortune whenever we can. These people are a Godsend. Seriously. Their knowledge, experience, and caring natures are pulling me out of my spiraling despair. We are all with you!

Sending love,
Erica

My MG started "mild" just double vision when first diagnosed. Then a drooping eyelid, and within a month, in the hospital for breathing problems. However, I got on a lot of mestinon and progressive amounts of prednisone, and that cleared up my MG symptoms and replaced them with prednisone side effects.

My own case of MG would have been much quicker to get under control if I would have taken high doses of prednisone immediately--but my neuro was so sure I was going to get diabetes from that, she opted for a longer term low dose --that is supposed to get to control too--she said IVIG, mestinon and 40 mg prednisone or less would get me there too. I chose not to do the IVIG, and went to 60 mg prednisone to get rid of the MG symptoms.

Problem is we never quite now if our mild case will stay mild or if it will get worse. Can happen both ways and can come and go for individuals, so sometimes the conservative approach is the right one. Especially if prednisone becomes a problem (high doses pretty much does mess up most of us for sleeping and other problems, but since we often can get MG under control, and then back down, it is tolerable for a few months or more).

Good Luck

I agree with Russ, once general MG starts it can get worse quick. I think everyone starts with Mestinon, but once it affects swallowing you need to quickly move to immune suppressants like Prednisone.

About a year ago I had a crooked smile and was diagnosed with a TIA. I had trouble chewing for a year but then got a tetanus shot a few months ago. Things got worse real quick.

We are not sure what sparks MG, but be careful and watch the symptoms. Make an appointment with an MG specialist at a teaching hospital. It may take time to get in - maybe months.

When I had trouble swallowing I got malnourished quick. My MG symptoms are under control with IVIG while waiting for the Prednisone and Cellcept (hopefully) to take over.

I would opt for aggressive treatment (check with your doctor) once general MG starts - if it does.

I think you need to know that the severity of your symptoms has little to do with whether the tests are positive. The antibody tests only pick up the antibodies for which you are tested and there are other antibodies known and more sensitive tests for the common one. These are not commercially available. Even for those positive for the most common antibody, the titers do not predict the severity of the disease . The EMG is not always positive and even in people already diagnosed with MG, the SFEMG test done by those most expert in the field may not pick up a known patient and our tests are not always done by experts. Negative testing is discouraging, but not definitive.

Your MG may be " mild," but you are having daily problems and it often seems that those treated agressively from the beginning do best. I am seronegative, EMG negative, family history of MG, SFEMG read as borderline given a "probable" diagnosis and Mestinon (after having to ask specifically) to which I responded dramatically, and then had the same SFEMG read by another neuromuscular specialist as abnormal with an unequivocal diagnosis of MG despite doing well at the time of the exam and "being the strongest person in his clinic."

You do need to prepare for the EMGs, those instructions are in the Links Group, the lab may not give you adequate instructions. If they are waiting to treat you until you have the tests, you may be one of the people for whom testing will make the most difference and you needn't feel like everyone that is "sicker than you" needs to go first. If the testing is negative, you still need to get on with treatment for your problems.

In the past, your history and physical were the most important for diagnosis, the response to the Tensilon test and oral medication were also helpful. But Tensilon is seldom given and often considered an unnecessary risk and the blood tests and EMGs have become more important for diagnosis. However, at least in the past, physical exam was more emphasized in Britain than the US, more information obtained, and less testing and reliance on testing for diagnosis. The sooner you get your testing done, the sooner you can be treated, and the sooner you can quit worrying about whether it will be negative or whether that will matter as to what the doctor decides to do and whether you will need to pursue other avenues. Do not be hesitant to ask for more help, getting treatment, or testing moved up, or put on the cancellation lists.

There is treatment for MG, no treatment for "nothing" which was my differential diagnosis. I certainly have needed and responded to treatment for MG. Hang in there, b.

it is very scary at the beginning. I remember that the fear of what could happen was impacting me more than my symptoms. It was change.

My MG is considered moderate because it affects my arms, legs, eyes, speech, swallowing, and breathing. However, the amount of weakness is on the milder side. Even so, a repetitive nerve stimulation test showed the classic horseshoe pattern of MG. Antibody tests were negative.

Thank you all so much for your replies!! Sorry if I seem slow at replying - I usually post at bedtime here in the UK and your answers come throughout night!

Thank you Elinora- I too am always having a better day when I see the Dr's - Sod's Law at it's finest!

Snowbeltfolkie - Thank you for your lovely post, I have only had the AChR Antibody test which came back at 0.12 and was deemed negative. I have not had the MuSK test but there is talk of it along with the nerve/muscle tests. I will be sure to watch my symptoms, thank you for sharing your story with me.

Bob, thank you for all of your advice and understanding - I am struggling with the "pretending I'm strong when I'm not" part at the moment. I'm almost afraid to say that I am struggling to a professional for fear of them taking the easy (psychological) way out for explaining my symptoms!

Barbel and Erica - Thank you both for your stories and support, you always write lovely posts here. It does help to know there are others on the milder end of this disease who have been able to get a diagnosis and are getting the help they need, so thank you, you give me hope that I will also.

Thank you Russ and 007 - I will bear your advice in mind when I (hopefully) have the option of some treatment. You make a good a point as I would probably be tempted to stick to a lower dose with milder symptoms but your stories and advice would now make me think otherwise!

B - as always you are the voice of knowledge - thank you for reminding me that test results do not relate to severity of symptoms, I think my anxious panic had erased that from my thought processes! This does comfort me a little! I know I shouldn't be surprised - but how can 2 Dr's read the same result and have 2 different verdicts?!?!I am glad you got the diagnosis and treatment you need and that your experience is able to help so many of us here! I have read the preparation for EMG in the links group which is a big help, so thank you! I know maybe I should try and get bumped up the list but I feel like my symptoms could be worse and I feel bad making a fuss with other suffering....also a negative test would be harder to deal with knowing I had made a fuss. But, you are right, I do need to know and need to quit the worrying which isn't helping anything!!

Thanks for your understanding Ann - the unknown is a frightening place!

Rhonda67 - thank you for your story, it gives me hope my nerve tests may give the anwsers to what's going on!!

Thank you all - I really appreciate you taking the time to reply.x

Hello Eve and welcome to the group. Working through the time it takes to get a diagnosis can be trying and frustrating. With MG the diagnosis can be an 'inexact science' so to speak. Even if you have negative serum blood tests and a negative muscle test you can still have MG. In a lot of cases the pattern of symptoms and your response to treatments is enough to make a dragonsis.

I have a positive blood tests for the antibodies (AcHr) and I had a fairly positive EMG test. I also had a CT scan for a thyoma and fortunately that was negative, they did note that the thymus was slightly enlarged. I would say my symptoms most of the time are mild to moderate. I am fairly new to MG and this group.

I was just diagnosed last April and am still figuring the whole MG issue out. Eve it is scary initially, especially when everything is unknown (diagnosis and treatment) I know I was scared and frustrated and frankly I'm still a bit scared at times regarding what MG will me in the long term. I am finding though through educating myself and having the great fortune to have found this amazing group of people, I am able to accept MG and am learning what MG means to my daily life and what changes I need to make.

I am slowly figuring out what symptoms to be cautious of and how much Mestinon to take as my doctor allows me to adjust the dosage to some degree each day depending on the level of my symptoms.

So far the symptoms I deal with which are mild to moderate, in order of the most frequent are:

-Double vision / blurry vision
-Shortness of breath, sometimes hard to complete a sentence
-Changes in my voice. Either a hoarse voice or nasally sounding voice
-Trouble swallowing, includes food going down the trachea
-Trouble walking moderate distances (about 1/4 mile). I tire easily
-Weak arms and hands
-Weak hips and legs (causes problems getting up from sitting or climbing stairs)

Note: For a lot of us heat and humidity either bring on or make our symtoms far worse.

I don't always have these symptoms and they come and go and often change within the same day; some days I have almost no symptoms.

The good news is that MG it is treatable and can be managed, there are a lot of other muscle diseases that are much harder to deal with. We are fortunate to live in a time that we have multiple treatment options to help us manage our symptoms.

Thanks for your question and for all of the great responses from the group, I learned quite a bit reading through these post

Best wishes and hugs Eve, please keep us updated as you work with your doctors and as always feel free to ask questions at anytime. I lo forward to hearing from you.

Take care

Joe