I have been a long-time lurker and finally joined to ask my question! You guys and gals seem to know more than the doctor's about this disease
Wanted to see if this sounds like anyone else's presentation.
My biggest complaint is with an overwhelming fatigued feeling in my arms and sometimes legs. It comes and goes. The best way I can explain it is it feels like I did 100 arm curls and now my forearms just want to rest in my lap. Or sometimes if I'm driving with one hand up on the wheel it will get tired feeling so I'll switch arms. My arms don't just quit working it's more of the feeling of tired muscles. The other day it was in my thighs too....I could still walk around and do things but they felt really worn out. Only for an hour or so and then it let up. I had this happen several years ago too and a neuro found some myopathic units in my shoulder blade and thought it was possibly a mild dystrophy of some type. Then I proceeded to have 2 more kids and was either pregnant or nursing for several years with no symptoms. My little guy is almost 2 and my symptoms are back again. CK is normal. Basic labs are all normal. New EMG is normal (even in shoulder)...some slight myopathy showed in my leg but I had had a previous compartment syndrome and surgery so they attributed it to that. One nerve was tested with a rep nerve stimulation and it was normal. All labs have come back ok....my ACh blocking was 23 with 0-25 being normal. I don't know if being a "high normal" means anything at all?! Musk bloodwork was not sent out correctly so it is being reordered. The only eye involvement would be I've been told many times that my eyes "look tired". I'm wondering if you can have a slight ptosis and not even really notice? If anyone has read this far, Thank you so much! Limbo land is very frustrating and when I have good days, I start to think I'm crazy until the symptoms come back!

Can we call you Kelly?

What you describe sounds exactly like fatigable muscle weakness, the hallmark of MG.

Do you know where they sent your AChR antibody labs? There is a difference in labs. Most doctors send it off to Mayo, who invented the test.

Antibody tests can fluctuate greatly. And severity of the disease is not necessarily reflected by what those numbers are.

What did the neuro say about your clinical exam? Were they able to fatigue your muscles?

Can you have slight ptosis and not really notice? Uh, yeah. I had MG my entire life (misdiagnosed with lazy eye when I was 10). I didn't even notice I had ptosis until 2000.

Try to take photographs of your face (same lighting, head tilt, location) in the morning when you're better and then later in the day. The pics I took before my MG crisis of my face and the ones I took after having steroids made it look as though I'd had a face lift!

Okay, enough with the "I think I'm crazy" nonsense! We all know when there are abnormal changes in our body!! And the fluctuation in your hormones from having kids can both make MG worse and better, so that makes sense that it would change like that.

Have they mentioned doing a SFEMG? Just make sure you have a diagnosis before they throw immune suppressing drugs at you. Why? Because those drugs make the signs of the disease go away and, therefore, a diagnosis becomes impossible to do.

I'd ask them to redo the AChR antibody test and send it off to Mayo.

Get a copy of your medical records, if you haven't already.

Start writing down your symptoms and when they occur.

Are you short of breath? You can see a pulmonologist to evaluate your breathing. Ask them to do MIP and MEP to see how well you are breathing in and out, for those are tests specific to neuromuscular diseases.

You can go see a neuro-ophthalmologist to see if they can fatigue your eyelids and to check for double vision. Can you tell if you have double vision? Take your pointer finger and put it about 15 inches away from your face. Slowly move it back and forth in front of your field of vision, keeping your head still. Does the one finger ever turn into two? If you close one eye, does it go away?

MG double vision is called "binocular," and closing one eye will make it go away. Why? Because when eyelid muscles are weak, they focus vision differently.

There are a lot of different ways to assess MG. They need to be thorough! If you have MG, it can be life-threatening, especially when you aren't on drugs yet. So, please, don't push yourself. I know, not easy when you have kids.

If you get worse, you really need to go to the hospital—diagnosis or not.

What else can we help with?

MG can be rough, but it's treatable and you can live a good life with it. Try not to get stressed out. It sounds as though your docs are doing a good job, so work with them on getting an answer (which it sounds like you are already).

I hope you get diagnosed soon!

Annie

Wow, Annie! Thanks for the thorough reply. All I know is my labs were drawn through Labcorp. Not sure where they send it though.
How would a neuro test for fatigable muscles? I can't remember them doing that? During my emg, they taped my fingers together and had me try to separate them as much as I could for a minute and then they did the test...I can't even remember now if it was the needle part or nerve part they did after that. I guess it was normal?
I think my neuro is looking for someone locally to do the single fiber EMG. He doesn't do them. I'm close to Kansas City so hopefully something will be available.
Is muscle burning ever a symptom? My neuro seems to think it's not, and I don't usually have it, but sometimes if my hands are above my head too long I get the tired feeling AND my shoulders will burn. He says he usually has people say their muscles just give out on them....like they quit working. I don't have that. I suppose I have a mild case of whatever I have.
Also because I don't have any swallowing/speaking issues or no/very minimal eye involvement, he doesn't really think it's MG. The only reason I'm posting on this board is that all the research I do, I keep landing back here simply based on the nature of my muscle feelings/symptoms. I feel like I don't really fit anything I've read about and I've done a LOT of reading!
Thanks to anyone for any insight you can provide!
Kelly

There is a lot of disinfo and even more misunderstandings about MG.

You know how athletes push their muscles to the limit, like runners do? Their muscles get weak at some point, cramp, spasm, and burn. The muscles of MGers just do that much more quickly.

Yes, muscles can "give out," but the spectrum of weakness is not that simplistic. Muscles can get so weak that they can be paralyzed. That's the extreme. And not all muscles are affected the same way at the same time.

Your writing/doing arm can be weaker than your other one. It all depends upon which of the 640 skeletal muscles are being used and how weak they get. There's no predictable algorithm for this disease, which can be a frustrating thing for left-brained people who need everything to be all neat and tidy (like doctors).

You might not have MG, but negative tests don't rule it out. As I said, ask them to send your blood to Mayo and redo the antibody tests.

There is no such thing as "mild" MG. That's mildly amusing. A MGer can go from having mild symptoms in the morning to severe at night. Or from day to day. It depends upon what drugs we're on, how much we do, how little we rest, the stability of the disease, etc. It can fluctuate greatly.

If an MGer gets overheated, for example, muscles can get rapidly weaker. (Heat increases acetylcholinesterase, which decreases acetylcholine.)

They taped your fingers together? Sort of a cheap version of the SFEMG, where you need to flex or raise muscles during the test. A person can have a negative RNS and a positive SFEMG.

Are you on any drugs? I'm asking because some drugs can make MG worse and some can interfere with test results.

See a neuro-ophthalmologist. A neuro is not qualified to do the testing that they do, which is very specific.

Getting diagnosed with MG is not as simple as 1-2-3. Give it some time!

Annie

Did they happen to check an aldolase level, vit D, vit B12?
Good luck!!

I'm not familiar with the aldolase test...I'll have to check. Probably not. I've had D checked in the past and although I've always run low, I do take 1,000-2,000 units daily of D3. I don't think we've done B-12 either. I am vegetarian, but not vegan. I do eat eggs and dairy. Thanks for the help.

aldolase can be abnormal in myopathies even when CK is normal, since you had myopathic changes with your EMG, albeit in different places at different times, plus proximal weakness, it's worth a inquiry!