Confused,

I'm sorry you're having difficulty getting a diagnosis. So many people seem to go through the same thing. As Alice has said, MG is an unusual disease, but many of experience some of the same things. I'm confident you WILL find the right neuro for your situation.

Rachel

Please don't give up. My neurologist was pretty sure I didn't have MG, and content to just check my progress in six months. I came back and said, "Look, I'm getting worse, and nothing is helping--we need to do something." He sent me to another neurologist, who diagnosed me.

I believe that it's persistence that will finally get you a diagnosis. See the sleep doctor, if it's not a crazy amount of trouble. Even if you don't have a sleep disorder, that will at least cross one more thing off the list of possibilities--and maybe you'll get a valuable referral there.

I'm so sorry you're going through this. As bad as this disease is, I was much more distressed by not knowing what was wrong with me.

Abby

Thanks for sharing your experiences and thoughts.

I really have no idea what is going on. But I am sure there is something going on since I just keep losing stamina despite exercising.

Has anyone ever had their cheeks affected. I've noticed when I smile after a few seconds my cheeks start to tremble and my lower lip shakes a bit.

The neuro's response to that was it was tension. I don't really understand that.

Since my fatigue has been chalked up to bad sleep for years it would be nice to know if that is the case.

My rheumy followup with me yesterday. She's so kind and available. She was just letting me know my MRI was normal. I'm glad I've got her on my team.

If the sleep study doesn't yield answers I'll definitely push further to rule out MG.

Thanks again for your time here.

One of the things my neuro pointed out to my husband during my first exam was my inability to raise the corners of my mouth when I smile. In fact, most of the time my corners point downwards in sort of a constant frown! (Improves noticeably with mestinon.)

'Grooved tongue' was another thing. If you stick out your tongue and you see sort of 'wavy' sides to your tongue...well those are the grooves made by the imprint of your teeth! It's another 'tell' of weak muscle. A 'normal' person's tongue does not need to 'contained or supported' by their teeth!!

These two checks (and many, many others) are a part of my exam every time I have a follow up appointment. All they ask before starting is how much and when did I take my last mestinon!!

When I'm weak, I can't whistle. I don't notice weakness around my mouth except for that. I think I read here that someone experienced the loss of the ability to whistle as her only symptom of MG for a couple of years before the other symptoms kicked in.

Abby

Confused,
Strangely you sound a very lot like me. I had a father and aunt with MG. My father was diagnosed by the neuro ophthalmologist (often our heroes), but went untreated for two years. He developed severe problems like his sister who died at 42, untreated. He died at 87, diagnosed at age 80. He was never treated aggressively and I don't know why. I saw his doctor because I thought he would have learned his lesson with our family and he ias a well respected expert in the field of MG. Both Dad and I are extremely strong especially for our ages. That doesn't mean that we are not also extremely weak at times and cannot do what we should be able to do given our basic strength, including breathing swallowing and walking. I was reluctantly given pyridostigmine and a rather wishy washy diagnosis of myasthenia. It is now a year later and you will be glad to hear that there is a doctor I saw this week at Vanderbilt who congratulated me on being the strongest patient in his clinic, said he was sorry for the weeds (I am an avid gardener) had no problem with accepting the diagnosis of myasthenia, and explained that since I was not planning on having any more children (I am 65) and my daughters are not, that testing for congenital disorder without more clinical direction would not be very profitable and that he thought it was autoimmune, and response to medication might be the easiest way to differentiate the two. I have had symptoms of this disease going back at least forty years and have been actively seeking a diagnosis for thirty five (off and on). The progression has been slow, but constant. Don't accept arrogance. I was told by Dad's doctor "myasthenia or nothing.". He was willing to go with nothing, but I was not. By the way his SFEMG which he interpreted as a borderline, the doctor I saw yesterday said was definitely abnormal and abnormal like myasthenia. I didn't even have to undergo the studies again. I have had the sleep, MRIs, blood sent to Mayo for antibodies, EMG all normal SFEMG reported initially as borderline abnormalities, but consistent and fluctuating eye findings and getting anxious before studies tended to make my clinical findings much better. I hope that is encouraging, not that any of us want to have this disease, but if we do, it is helpful to have a diagnosis so we can be treated.
Yaaay for clinicians that are physicians. nc

PS. I also have ocular migraines. nc

Hi Nightcrawler,

Wow, that is so interesting. I think my dr refused treatment because he lost all faith in dr.s as he progressively lost weight and his drs were strangely unconcerned. I even read a report where they called him difficult because he refused a swallow study because he could no longer drink the barium.

Interesting about the wavy tongue. I have that too. Sometimes I can't whistle either. But I also have oral psoriasis so I always figured that was the cause of those things.

Who knows.

My primary care doctor has referred me to a neuro-ophthalmologist. I love my pcp. She is always very thorough. When you are having weird symptoms and feeling really poorly it makes sense to check things out.

Thanks again for sharing experiences.