Hi all,

I would like to share my symptoms with all of you in the hopes that someone can tell me if I should pursue MG investigations.

Here is my story: left eyelid droop (intermittent) since the age of 20 or so (I am now 40); feeling of eyes wanting to go out of focus (especially bad after physical exertion such as running/lifting heavy objects), easy fatiguability of arm/shoulder/neck muscles (eg difficulty holding a phone up to my ear or rifling through clothes overhead when shopping), unrelenting fatigue and general feeling of weakness, brain fog (especially bad after physical exertion), bad reaction to an aminoglycoside antibiotic recently, weak voice projection at times, occasional breathing difficulties when laying down (usually resolves after a few minutes), muscle soreness that seems disproportionate to the activity that precipitated it, and prolonged fatigue and recovery period following exercise.

I have had the achr (?) blood test which was negative, but positive IgG (?). Recently, I tried an aminoglycoside antibiotic that left me laid up on the couch feeling weak and nauseaus (1st time trying this type of antibiotic).

With a negative achr, should I assume that MG is not a possibility...or has anyone out there been dx'd with MG after a negative result. Do my symptoms resemble anyone else's? I was told that muscle pain and fatigue are not symptoms of MG, so am not sure what to think.

I am looking for some direction to pursue as many of my other tests (eg lupus, etc) are negative, but I have felt awful now for the past 5-10 years.

Thanks in advance...

Hi ... and welcome to forum!

Many of your symptoms sound MG .. and the ones like pain and general fatigue could be secondary. They can happen because we try to keep going and 'push though' the MG impact. This can result in overused muscles (ie. the ones that worked too hard when the others were weak) causing pain/soreness. The general fatigue can be just plain exhaustion from trying twice as hard to get half as much done!!

But be very careful re: the breathing issues. This needs to be addressed - when breathing is involved it can get dangerous.

Yes, it is possible to have (and be dx'd) with MG when all the classic indicators don't show up to be measured. I am seroneg and borderline pass on SFEMG ... but I take 30mg of Mestinon every 3 hours to get through a 'do nothing' day ... and more on an active day! And it took an 'enlightened' neuro to dx me without the 'standard' test profile. (My second by the way....the first was definitely NOT enlightened!!)

Are you working with a neuro now? Have you had a CT scan of your thymus? Have you had any 'tests' - like a trial dose of Mestinon under supervision or a tensilon test? Did your blood work include a full thyroid panel, B12, and Vit D work up? Does anyone know about your breathing difficulties?

You may have to be quite persistent to get a diagnosis. Any you may have to go through a few docs along the way. But don't stop! If it is MG, there are things that can help.

Pls keep us posted with your progress...and always feel free to ask the forum whatever questions you may have. There are lots of more experienced folks than me here who are super knowledgeable.

I was diagnosed with MG in 2009. My symptoms only started 12 days before I ended up in the emergency room. I did have a large thymoma removed which started the thought process of a MG diagnosis. I also am ACh negative and seronegative, however I am striated muscle positive, which is a rare symptom of MG.

Luckily I have a very good neurologist and an even more determined husband who has spent so much time researching this illness. I am not able to take Mestinon, which is the first thing they tried after the thymoma was removed and I started having the extreme symptoms. I had a bad reaction which ended up putting me in ICU for a week, but I have an additional diagnosis of Stiff Person Syndrome which I believe played into that reaction.

I wish you luck in getting a definitive diagnosis. From reading the many comments on this site, I am beginning to learn so much about how hard this illness is to pin down and how long it takes some people to reach the final conclusion.

Southern Bell

Hi, and welcome. I want to strongly encourage you to pursue this with a neurologist who specializes if not in MG itself, at least in the diagnosis of neuromuscular diseases.

There are many of us here who are diagnosed with MG even though we test negative for the AChR antibodies! And many more who only tested positive after several tries. There are also other antibodies that can cause MG (like the MuSK antibody) that you should be tested for.

I have never had a positive blood test, but I was diagnosed with MG after three Single Fiber EMGs--the first two were borderline, but I traveled a couple of hours to see a specialist for the third, and he thought the test was conclusive. It's a specialized test that not every neurologist knows how to perform. Some people are even diagnosed only on the basis of their response to Mestinon (pyridostigmine). Many neurologists who have experience with MG would be willing to give someone with your symptoms a trial run with this drug.

A lot of us here--most of us, probably--had difficulty getting our diagnosis, so we know how hard it is to be in your position. For me, that's been the worst part. So we understand what you're going through, and we wish you all the best on this journey. Please feel free to ask questions here.

Abby

Thank you to ALL of you who have responded. I am not sure if I am barking up the wrong tree with MG or not, but I need to see if I can get to the bottom of my medical issues!

By way of update...I do have an underactive thryoid for which I have been treated x 20 yrs. The symptoms I described in my last e-mail have persisted regardless of being properly medicated for thyroid issues. It is so frustrating when a new dr looks at my file and automatically assumes my symptoms must be thyroid related. I do think that my meds exacerbate my symptoms, particularly when they are too high, but I have read somewhere(?) about a connection b/w thyroid and MG. The icing on the cake was when I had such a bad reaction to a recent antibiotic. However, I am afraid to re-raise the query of MG with my primary care dr for fear of judgement. I'm sure many of you have been in these shoes?!?!

Can anyone tell me - with MG, can cognitive problems (eg brain fog) be a major component? If I exert myself, not only do I feel physically depleted, but cognitively "out of it". It becomes hard to read, to understand, to write coherently, to follow conversations, etc...Does anyone else experience this?
And the urge for extended rest after exertion? (I have slept for 15 hours straight after 20 minutes of really heavy lifting).

I have never lost complete use of any muscle or muscle group, but the left side of my face feels funny - kind of like the muscles around my mouth are not quite working as they should (ie it feels like a real effort to move them). And some days, when the eye drooping gets bad, my face has a very flat expression - hard to describe - but hopefully some of you know what I mean...

Thanks in advance for any answers to my above questions and an other feedback you can provide me! I am really grateful I found this forum...

Hopefully I am posting my replies in the right spot - still trying to navigate the forum...

Anyhow, here is some more info based on all of your posts...

I don't have a neuro (haven't seen one yet and don't even have a referral)
No CT scan of thymus done, only the achr test
Have had no trial of mestinon or tensilon - would love trial of mestinon to see if it makes any difference

How are the single fiber emg's performed? Is it on your arm or a different part?

Can handwriting be affected? Mine is awful today - have no strength and have difficutly with fine movements req'd when writing.

Is there any benefit to choline supplements?

So much of what you are asking is what I have experienced and continue to live with. I can only answer for me....but here 'tis for what it may be worth.

Yes, I get brain fog...most noticeable after a stressful situation for me. It's like a 'zone out' for me. Doesn't happen every day...or even every week. But it happens enough for me to know it is the MG. Deep breaths, slowing everything down, and a time out can help.

Yes - if I talk too long - - or try to sing to the radio (the length of time has no meaning in minutes...sometimes a few minutes...sometimes not at all - just depends...but I never know on what it depends!!) I get a tightness in my throat and can get tongue tied too! Then of course, there is the inability to hit or hold a note!! My hubby says volume control can be an issue too.

Handwriting? Oh Yeah! there are days when I make out checks I wonder if someone else is signing them!

And yes, there are days when all I want to do is curl up in bed because everything is such an effort (nothing hurts - everything just takes more energy than I have to give).

But there are the good days too. Days when I can get out in the garden, go play some golf, talk a walk, bake cookies. I'm just never sure what kind of day it's going to be when I get out of bed!!

I don't take any supplements besides B12. I try never to take antibiotics...or any over-the counter meds. But that's just me. There is a list of drugs that MG'ers must be careful of and/or avoid on the Muscular Dystrophy (mda.org) site. You have to be careful of novacaine too.

MDA in your area may even help you find a neuro with experience in diagnosing MG. But do pursue this ... and don't be afraid to ask any potential doctor if they currently have or have diagnosed MG patients before you even bother to make the appointment. That may save you some grief!

Thanks - am planning to see my dr next week, so will check with her about a referral. That's good advice to ask about experience with MG ahead of time!

Do you, or anyone else on this board, know anything about the connection between hypothyroidism and MG (eg how thyroid meds may impact MG)??