Hello everyone,

I am a 28 year old woman in Texas still awaiting an official MG diagnosis despite some pretty debilitating symptoms. For the past five months I have been experiencing fatigue and generalized muscle weakness, primarily in my arms and legs with occasional swallowing issues. My PCP thought it sounded like myasthenia gravis or LEMS, and sent me to a neurologist. The neuro said that I clearly had fatigable muscles in my arms and legs during muscle strength tests which pointed to MG. He sent me off to get my antibodies checked, but both AchR and MuSK came back negative.

During the past week my breathing started to feel a little weird and heavy, like it was taking more work for my muscles to operate my lungs. I didn't think much of it (dumb mistake #1) and ignored it as it got progressively worse over the week. On Saturday I woke up feeling great! I cleaned up the house and took the dogs to the park and even ran around with them (dumb mistake #2). By Saturday evening I was in rough shape and couldn't get out more than a couple of words at a time because my breathing had gotten so weak.

I had my husband take me to the ER and I was admitted that night. Luckily I was breathing well enough by then that I didn't need ventilation or bipap. The hospital neurologist agreed that this seemed like a pretty classic case of generalized MG. After a chest CT, brain MRI, and a few rounds of steroids, I was released late Monday. Today was my first full day back at home and breathing is still a bit of a challenge. I'm not sure how much the steroids really helped.

The neurologist I saw at the hospital encouraged me to see my normal neuro ASAP to get started on MG treatment, regardless of the fact that I haven't been officially diagnosed. I know everyone's case is so different, but have people with generalized MG (no/minimal eye involvement) and/or double-seronegative folks had success with Mestinon? Or was another treatment more effective for you? I'd like to go into my next appointment as knowledgeable as possible about treatment options.

I'm also scheduled for an EMG tomorrow-we'll see how that goes! All I really want at this point is an answer. I will update as soon as I know anything new. Thank you for reading and I would appreciate any thoughts or advice anyone may have.

Hi, Psychitect. Welcome to the forum! Should we call you by any other name?

I snatched your post from the other thread because it might get lost in there!

Where were the AChR antibody tests sent? Mayo?

Some MG patients are seronegative, meaning that no antibody is showing up yet OR there is an antibody that hasn't been discovered yet that they can test for. If you have a low IgG level, the antibodies could be falsely negative.

Since your clinical exam was classic MG, you had significant breathing issues, and were admitted to a hospital due to that, you need to see a neuro right away!! Call their office first thing in the morning and then tell them that you were just in the hospital and the ER doctor SAID that you needed to get in right away. They'll fit you into their schedule!

I'm sorry you are doing so poorly. The good news is that there are treatments for MG. Mestinon is usually what they try first. It's a helper drug and does not address the underlying issue of antibodies attacking the neuromuscular junction.

How did you react to the steroids? Are you still on them? If so, what dose? Did you get IV Solu-Medrol in the hospital?

Steroids can make MG worse before it gets better. They are also very difficult to get off of, so, if you're still on them, I hope they gave you a taper schedule.

You need to take it as easy as you possibly can right now or you could end up in a full blown myasthenic crisis. If you can't breathe well, swallow, or are generally weak, you need to dial 911. It's hard to tell how quickly you will go into a crisis or how severe it will get. Not saying that to scare you, but to make you prepared for a "what if."

Since you live in Texas, the heat will be a big problem for you! You need to stay out of it, because heat makes MG exponentially worse. If you get overheated, cool down right away, especially your core/trunk muscles. You might want to take a thermos with you with cold packs in it if you go out. In the past, I have literally put them under my shirt, on my skin, to cool off! It's common to have an MG crisis in the summer (or in the fall in southern states!).

Do you have ptosis (drooping eyelids) or double vision? It doesn't matter if there is "minimal" involvement of ocular muscles, MG is MG. It can affect some muscles more than others and it can vary through the years! It's a very unpredictable disease.

A neuro-ophthalmologist can assess your eyes and determine if you have fatigable ptosis and double vision.

When you are feeling better, you really need full pulmonary function tests, plus MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests done. Those are neuromuscular specific tests that show how you are doing at inhaling and expelling air. Plus, a pulmonologist can do an arterial blood gas if necessary, an overnight oximetry (O2 can drop significantly while sleeping), and any other tests they feel are needed.

It's really essential to have a pulmonologist. When my breathing is worse, I can get breathing tests without having to see my doctor! We set it up that way. It is possible to fend off a crisis that way. A neurologist is not qualified to assess breathing issues, even if they sort of know about it!

I don't think there is any MGer who hasn't made a mistake by underestimating MG! It can be a tricky disease and it might take some time to figure out how far you can push it (without it pushing back!).

www.myasthenia.org
www.mdausa.org

There are some drugs MGers can't take (listed on the first site).

The important thing right now is to get some help. Call the neuro's office and get yourself in to see him. If you can, get someone else to drive you there and back. You aren't doing well right now and need to seriously pamper yourself.

What else can we help with? People here are great and have a lot of info and support to offer.

Annie

Hi Annie,

Sorry for the slow reply--I broke the post by accidentally having two accounts. I'll stick with an anonymous name for now

They didn't tell me where the antibody tests went, though the MuSK test took a week longer than the AChR test. Is the Mayo Clinic the main place that these are sent to?

In the hospital they did give me IV solu-medrol, though it's hard to say whether it was the steroids or being in bed for a few days which helped. They didn't sent me home with any medication because of my upcoming EMG test. Despite that steroid treatment I am still having some breathing issues which currently restrict me from doing much. You're right, I am definitely going to take it easy. It's been tough to swallow my pride and ask my husband for rides to work and help taking a shower, but it's better to be temporarily embarrassed than put back in the hospital!

As far as the eyes are involved, I occasionally feel like my eyes are slow to focus on things toward the end of the day (sometimes there's a bit of a 'jitter' when changing focus). Other than that, no droopiness or double vision.

As I mentioned in my first post, I had my EMG test done a few days ago which came back positive for MG. Interestingly, the (very old) neurologist conducting the test said that in his whole career he had only seen two people with MG that were double-seronegative without ptosis at diagnosis. He also mentioned that he--and most doctors--couldn't do a SFEMG anymore because the needles for it are no longer being made. I hadn't heard about that and thought that was interesting and disappointing.

Is MEP and MEP different from vital capacity? In the hospital I met with a respiratory therapist who said that my inspiratory and expiratory capacities were great--despite the fact that I was feeling like I had a 30 pound weight on my chest.

Right now I have a two-week wait to see my neurologist and discuss medication. My fun conversation with his nurse/assistant:

"He doesn't want to see you until he can review your EMG results."
"But he'll have those tomorrow! Can't he see me in a couple days? I was hospitalized with breathing problems!"
"Sorry, no."
"The neurologist at the hospital said that I should start a trial of Mestinon as soon as possible."
"You can discuss treatment at your appointment."
"My muscle weakness and breathing are really bad still. I'm worried that things will get worse. Can you tell him that?"
"The doctor will call you if he's concerned."
"So there's no way for me to see him sooner, at all?"
"You can go to the ER if things get worse."
*SIGH*

I'm on the cancellation list so hopefully I can get in sooner. I'll probably call again tomorrow to see if he can see me this week. Be the squeaky wheel and all that. From all the stories I've read on the forum, I wish dealing with doctors, insurance, etc wasn't so unbelievably frustrating.

But the good news out of all of this is that I finally have a diagnosis and will hopefully be feeling better soon!

Hi, Psychitect. No worries. We are all busy and do the best we can, right?

Mayo invented the ACh test and some labs (Quest, for example) do not do as accurate of a job analyzing the results! Also, antibodies can be "tissue bound" or they can "circulate." Maybe yours are too busy attacking tissues to come out to play for the antibody tests. Antibody tests fluctuate (which is normal) and they might be positive later on. It might be worth redoing them in 6 months to see if they've changed.

If any of the ocular muscles are weak, there will be focus issues. That ALSO means that you have double vision. You might not even realize it. I had it my entire life and thought it was only blurry vision! It wasn't until I saw a neuro-ophthalmologist that he showed me clearly (via visual tests) that I had double vision.

MG double vision is called "binocular," and when you close one eye, it goes away. In monocular DV, which has other causes, it doesn't.

It's good that you have an answer. A regular EMG is not as specific for MG, but if they are confident you have MG, then that's great! Well, great that you have the diagnosis, not the disease!

I laughed out loud when you said that about the SFEMG needle "shortage." What they really have a shortage of is TIME (time=money). The test itself takes a long time to do (well), plus it takes additional time to evaluate the results. They really should tell doctors that lying isn't an attractive trait to have (no offense meant to your doctor).

Some background info.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108086/

http://neuromuscular.wustl.edu/mtime/mgdx.html

Were you in a "booth" when you had your breathing tests or did you just have a handheld breathing device? If it was handheld, chances are that you had a very rudimentary version of MIP/MEP. Did they do the breathing test at your bedside? That's often called a bedside spirometry and, again, is not as accurate as the standard MIP/MEP.

I HIGHLY recommend getting in to see a pulmonologist right away. Please, don't mess with your breathing!

The fact that they did not continue treatment for you when you are clearly in an MG exacerbation is beyond unethical. And dangerous. Stopping treatment because you're about to have a test is pretty risky. I do understand needing a diagnosis, but now you've had the test and need treatment!

I cannot believe the lack of commitment to a patient's well-being here. Call back and ask to speak to the clinic's administrator (if you want to).

If you are having that much trouble breathing (or swallowing or moving), then you do need to dial 911 and get help from the hospital. MG is nothing to mess with and you need further medication. I'm glad you're taking it easy!

What else can we help you with? There's a lot to learn about MG. And even with meds, you can't "push" this disease, because it will push right back!

I hope you can get someone to help you soon!!!


Annie

I was diagnosed with ELMS within a few minutes on the emg.. they also did send out the bloodwork to the mayo clinic but the emg was definitive.
muscles start out weak you move them a few more times they get stronger.. LEMS..
My symptoms are almost the same as yours and when it all started (3 years ago) it was the same hard to breathe, knees just giving out, started falling, arms would even get sore just drying myself off after a shower.. They checked me first for lyme, then i also forced them to do a western blot, both came back -.

then I was told it was all in my head and i was working and riding my bike to much causing muscle strain and weakness.. I went through a long road of about 3 doctors and 8 months to finally get to someone that diagnosed me..

I was in the hospital many times in the beginning after when it got real hard to breathe and they did nothing.. Just let you sit there because the o2 level was ok..
You are going through what i did at first everyone yanked my chain as to what was wrong until i got really weak..


If you end up with LEMS get somewhere where they can get you 3,4-Diaminopyridine and a mestinon combo this will greatly help you. without to many side effects, I am also on cellcept now after fighting taking it for over a year.. and it is helping somewhat.

MG and LEMS are similar but not the same. I after 3 years of different treatments still can not walk more then 50 yards at a time and still cant even bend down to pick anything up off of the floor because they took so long to diagnose me and i had gotten so dam weak that it will take years for me to ever walk up a set of steps without a banister.. going down steps? forget it.. if there is no banister i have to go down on my a#%.

Good luck Hope they get you officially diagnosed ASAP..