I am currently in diagnostic limbo, going to the university specialists this week. Anyhow, I was curious if anyone with MG here has focal muscle weakness? I have periods of time where I can't hardly smile and if i smile or laugh, my face simply won't have the ability to smile, laugh or make the "crying" face for a while afterwards.. the muscles almost tremble with exhaustion for a while.. same goes with the rest of my body.. however I also have constant weakness in my tips of all fingers and entire thumbs.. it's been constant for almost 3 months now.. I have a triple furrowed tonge, slurred speech and swallowing feels difficult- all at the end of the day or after talking a lot. My initial MG serum panel came back negative- though that didn't include MusK (plus I have never mounted antibodies in my blood my entire life- found this out for vaccination purposes). Anyhow, any insight/experiences would be greatly appreciated!

As for the blood panel, you will find a lot of people here have NEVER tested positive. My first panel was negative but 6 months later was positive. I think the lack of ability to smile is a classic symptom. That was one of the test my neuro-muscular doctor always gave me. My sister has a horrible droopy face at the end of the day. (won't go to doctor) I don't recall hearing about the numbness in finger tips or the tongue thing but the rest seem to be classic symptoms.
Mike

I have the furrowed tongue with scallopped edges (definitely symptomatic of MG). I have tingling and sensory loss and extreme cold sensitivity in my fingers, and some weakness--probably Reynauds combined with MG. We often have other autoimmune things going on with MG. I am seronegative as well. I agree with pingpongman that the rest sounds like the classic presentation of MG, which should help with diagnosis, my initial findings were not classic, but with time . . . b.

Your symptoms (except for the fingers) sound like MG. I'm still neg for antibodies - but could be a clinical MG show and tell for med students!! Luckily my neuro is one that believes 'if it walks like a duck and talks like a duck...it's probably a duck' and is treating me for MG.

Thank yall all so very much for your replies! I really appreciate it!
Did any of yall have focal weakness- consistent muscle weakness in one place? I have all over muscle fatique/shakiness but this finger weakness thing erks me even more
How did yall get diagnosed? clinical only? Single fiber EMG? Tensilon test? I have my university neuromuscular appointment in only 3 days - i am NERVOUS of a really scarey diagnosis.. but I am only 31 years old, female and post partu after some physically traumatic stressors (procedure gone bad= blood transfusions, and some GI issues that followed) but at times my whole body is so weak i can barely put one foot in front of the other.. other times i'm better! Did yall just take mestinon (sp?) or anyone try IVIG? Thanks again,and sorry for so many questions!!! I'm just nervous!

Welcome to the group. We understand what you're going through!

I'm going to try to do a summary of the typical diagnoses and treatment around here. It's just based on my impressions from reading this board for about a year and a half. I'm trying to give you a sort of lay of the land.

The majority of people who post here were diagnosed by blood tests. Of those, the majority are AChR-antibodies positive, but we have a handful of MuSK people, too. I can't remember any LEMS people since I've been here. But a significant number of us (including me) have never tested positive with antibody tests. Of us sero-negative people who are diagnosed, most of us were diagnosed on the basis of a SFEMG. I'm not sure if we have anyone here with negative blood tests and a "normal" SFEMG who is diagnosed based just on symptoms, but we might. It isn't unheard of.

I've noticed that quite a few of us who were having trouble getting a diagnosis finally got one from a neurophthalmologist, even if, as in my case, eye symptoms were mild.

I'm pretty sure all of us have tried Mestinon. It's considered a safe drug, so many neuros are willing to prescribe it if they suspect MG, even before they do any testing. Mestinon helps the majority of us, but not all of us (including me). A few people can't tolerate the side effects (mostly GI), but most people don't have trouble with that.

IVIG seems to help the majority (are you noticing a pattern here?) of the people who try it, though some of us find it didn't help much the first time or two. IVIG is very expensive and cumbersome, so it's used in emergencies (when someone's having trouble breathing or swallowing) or for people with severe symptoms that can't be managed in other ways. A good number of people here have IVIG regularly, usually every six weeks. There are a few people here who need IVIG but who can't have it because they don't have insurance, which is heart-breaking.

An alternative to IVIG is plasmapheresis.

Most people here are on some combination of Mestinon, steroids (Prednisone), immunosuppressants (Imuran, Cellcept) and IVIG. We have one member who had a very radical treatment (someone tell me if I get this wrong): chemotherapy to completely destroy her immune system and then drugs to stimulate it. The idea is to "reboot" the immune system in the hopes that when it starts up again, it will forget it was attacking the neuromuscular junctions. This is, of course, a dangerous and traumatic treatment, but for her it was very successful. I think it wouldn't be attempted unless the disease were severe and refractory (resistant to all other treatments).

I hope you get some answers soon. If you're like me, you'll find the actual disease easier to handle when you're not dealing with all the not-knowing at the same time.

Abby

I had all the tests...NCV, EMG, SFEMG, (all nerve tests) AChR and MUSK antibodies, VCC, complete thryroid panel, etc. (bloodwork). Then there was a CT scan (abdomen and thoracic cavity), MRI of brain and upper spinal column, and an EEG (the last one I never understood), and a pulmonary function test.

I have to say I was getting really worried there for a while! All that and everything came back fine except for EMG/SFEMG that were abnormal but not in the 'fail' range.

So my neuro tried an in office dose of Mestinon...to which I responded beautifully...and voila!! You have MG.

Stellatum - wow thanks that was a GREAT explanation!!! and suev, I really appreciate both of yalls replies!!! Only one more day until my appointment on wednesday and I'm NERVOUS...

I have one seriously bad fear, though my story and age dont' fit well with it - i have fasiculations, muscle wasting diffusely and mouth tongue involvement , and thats ALS.. i'm absolutely terrified.. but from what I can find online (aka dr google, which I know isn't a good idea for me to be searching online, but i'm a medical mystery to the dr's and the first doc mentioned it as a possibility , others have said they don't think it's likely, two clean emgs, which is strange)

But then I also have the double vision at night when tired, eyelid thing and just diffuse muscle weakness that started all at once.. they thought maybe cidp.. but 2nd emg discounted that and i have normal reflexes.. I then came across the triple furrowed tongue thing... which is my tongue exactly!! I can't find any other disorder besides MG musk that explains a triple furrowed tongue, I have had the fasiculations for over three years.. so that might not be related at all.. ugh.. I'm beyond nervous, but I can't tell yall how much I appreciate yalls time and replies.. I will be makimg sure they also consider an atypical MG presentation along with everything else too.. ya never know!!

One thing I didn't say before is that it took a GP, a rheumy, a cardiologist, an oncologist, two neuros and about 1.5 years for me to find the right neuro and get my dx. My symptoms were real - but vague - and I have a very thorough GP.

The point is I don't want you to get discouraged if things don't move rapidly. (And my first neuro referred me to an ALS clinic...which scared the xxxxx out of me! I responded by finding a new neuro of my choice!! And lucky for me, I got a really good one on the second go.)

Pls let us know how it goes...will be thinking of you.

sounds familiar. i had the same amount of doctors just took a little longer. one thing about all my doctors is that they werent trying to send me to specialty clinics like that they were saying that my symptoms were things like asthma or allergic reactions to food. i finally got the right guess (because thats what it was) from a ear nose and throat doctor that had never heard about myasthenia until a week before i came into his practice when he was reading a medical magazine. if it werent for that strange coincidence idk if i would still be undiagnosed.