Is it possible to have MG but without droopy eye and no double or blurry vision?

My symptoms are:
Weakness in my legs specifically hips and buttocks
Weakness in my shoulders, hands & fingers
Shortness of breath
Choking on liquids and saliva comes and goes

The weakness comes and goes when I use my muscles alot. Like if I am on my feet for 2 hours or am running around doing errands for several hours. Same with my shoulders, hands & fingers. Like if I am holding a baby for a couple of hours then I am like a rag doll. When I wake up in morning I am completely fine. I don't work as I am a stay at home mom so sometimes I don't do much physical work and I have no symptoms. Just the days that I have a lot going on.

My ACH test was negative. My neuro said only possible thing was MG till test came back negative. Also negative EMG. He ruled out MS & ALS.
What do you all think? Should I pursue further?
Thanks!

Hi, and welcome. I am diagnosed with MG, and I don't have eye symptoms either. The symptoms you describe sound completely consistent with MG to me.

Many of us on this forum are seronegative (which means our AChR antibody tests came back negative, too). There are other antibodies they can test for (LEMS and MuSK). But even if they don't find any of the antibodies, it doesn't mean you don't have MG. Some people test negative at first and positive later, and some people never test positive.

You say you had an EMG. Did you have a single fiber EMG? That's a special kind of EMG with no shocks. The doctor puts a needle into your muscle and leaves it there for a few minutes, while he asks you to clench and hold the muscle.

I ask because a single-fiber EMG is much more accurate for detecting problems in the neuromuscular junction. Not every neurologist knows how to do a SFEMG.

Anyway, as to whether you should pursue this: yes, definitely! The symptoms you describe are classic MG symptoms. If your doctor doesn't want to pursue it, ask him if he can recommend another specialist. I stymied my doctors for 15 months until I was sent to a different city to see a doctor who specializes in MG.

Please know that if your symptoms suddenly get worse, or you're having real trouble breathing or swallowing, that this is a medical emergency. Go to the ER or call an ambulance. There are treatments for myasthenia gravis that they can do in emergencies (plasmapheresis or IVIg) that work really well.

Please don't hesitate to ask questions here.

Abby

Hi and Welcome!

I agree with everything Abby said.

I too had general symptoms with no eye symptoms (or so I thought). In my clinical exam, my neuro pointed out to me that my eyelids 'hung over the top part of my pupils'....well, they've been like that for a long time! lol. After taking Mestinon, eyelids don't hang...and the corners of my mouth don't hang down either.

My only point is I thought my initial symptoms were arms mostly. After my neuro exam (clinical), I found out eyes, mouth, eyelids, weak hips, legs were all involved. Ain't coping mechanisms a kick!

To this day, I have never tested positive for antibodies or outright failed a SFEMG. But I depend on Mestinon everyday...and very lucky for me, it's all I need - so far anyway!!

If you can find one, I highly recommend an ophthalneurologist! That's who diagnosed me. Yup, even though I don't have eye symptoms. First, he saw eye symptoms I didn't notice, and second the single-fiber EMG (SFEMG) he did on the muscles of my face was very clear to him (even though I haven't noticed any weakness in those muscles). I'm not the only one on this forum who was diagnosed by an ophthalneurologist after regular neuros couldn't figure it out.

Many neurologists are willing to let patients with suspected but unproven MG try Mestinon. It is fast acting (I mean that it kicks in in about half an hour, and leaves your system in about six hours) and pretty harmless. Some people get diarrhea, but most tolerate it well. It inhibits the enzyme that breaks down acetylcholine, which is the chemical your nerves release to communicate with your muscles.

Anyway, if Mestinon does wonders for you, that's one more reason to believe you have MG.

Abby

Abby,

I wouldn't have mentioned this, but as you keep on questioning your diagnosis (which is overall reasonable, as you obviously have some type of myasthenic syndrome, but this doesn't have to be autoimmune MG or MG at all), I will.

The SFEMG has a lot of false positives. (in fact this is agreed by all neurologists, as opposed to the opposite).

After I had numerous negative SFEMGs done by one of the best neurophysiologists, I was seen for consultation by another neurologist who did on the spot a SFEMG of a few muscle and all showed clear cut and unquestionable jitter. I noticed right away that she used a very different technique and questioned those results myself. It didn't make sense that I would suddenly have jitter in every possible muscle after 3 years in which it was constantly negative. And like you, I didn't want to be diagnosed with something I don't have.

I ended up consulting another neurologist, who sent me to one of the best neurophysiologists. Needless to say that my SFEMG was completely negative, and when I showed him the results of my positive test he shrugged his shoulders.

My neurologist recently told me about a patient he saw in his clinic who complained of generalized fatigue, but had no symptoms or signs of MG. She came with an unquestionable diagnostic EMG. As my neuorlogist is an excellent clinician and doesn't diagnose (or rule out a diagnosis) by test results, he sent her for a repeat test to a more experienced neurophysiologist and this test came back completely normal. He said to me-The SFEMG is a very hard test to perform, and it is OK not to know how to do it. Unfortunately, not everyone that thinks he knows how to do it, really does.

This test, in my opinion is very unreliable (both ways) and if your diagnosis is merely based on that, I think you are completely right in questioning it.

Alice,

Thank you. Something in me already knew that, and it looks like it's time to dig it out and address it. I did think it was weird that two different doctors could get such different results on the same test. I think I've been thinking all this time that if one of those two doctors is right, it's more likely to be the one who diagnosed me, because he's a renowned expert with the most experience with MG. He says he's seen 300 MG patients in his career. I traveled from RI to Boston to see him.

My first two SFEMGs were performed by the same doctor. The first one came back "borderline" and the second came back "mildly abnormal." Then I was sent to the neuro with a special interest in MG, especially the ocular kind. He practices neurology, but also ophthalneurology. He did the SFEMG on my face, which was weird since I don't have any noticeable face/eye symptoms. He did a stimulated SFEMG (my first two were the normal kind). To him, the results were very clearly abnormal. He didn't even tabulate the information before declaring that.

But he also said one of the decisive factors in deciding that I should be treated for MG was that I have Graves' disease. In fact, my Graves' had been in remission for years, but I had a big relapse just a few of months before my first noticeable MG symptoms appeared.

My current neurologist has never wanted to do a muscle biopsy, even when I had no diagnosis. He said they yield false positives for all sorts of things.

My current neuro accepted the other neuro's diagnosis and has never questioned it. I think that's the right way to go. The evidence that I have an autoimmune myasthenic syndrome isn't 100%, but it's enough to proceed with treatment--and once that decision is made, there's no sense constantly questioning it...until the treatment has been given enough time to work and it's not working. Then is the time to bring up other possibilities. That time is approaching, but hasn't arrived yet.

I'm sort of thinking out loud here, but tell me if all this makes sense to you. The other element is the IVIg. My first course made a difference, but not enough of one that I was positive it wasn't the normal ups and downs of the disease. My second course made a dramatic difference. I had six weeks without noticeable symptoms (without IVIg, I haven't had a single day like that). That goes a long way in assuring me that suppressing my immune system is a reasonable thing to try, a reasonable risk to take.

There's one more factor here (sorry this is getting so long...). I had the first SFEMG early on. For the second one, I was on Mestinon. I stopped it 24 hours before the test, but I really believe that that isn't enough, and here's why: Mestinon gives me muscle twitches. When I stop taking it, it takes those twitches a week or more to go away--they subside slowly. So, for the third SFEMG I went off the Mestinon for ten days before the test. There's at least one study out there showing that Mestinon can mess with SFEMG results as long as a week after taking it.

Thanks so much for helping me think through this. I am not expecting myself to make an omniscient decision here. I just want to make the most reasonable ones I can given the information I have.

Thanks again.

Abby

I only had the regular EMG not Single Fiber EMG.

Forgot to mention I have daily fatigue where I have to take a nap. It's so strong I can't stay awake. I also forgot to mention I have slurred speech when I am tired. Can be in morning since I wake up tired or at night. My husband doesnt notice it but I do. And I just started having weakness in my fingers/hands first thing some mornings before I get out of bed. The problem with my eyes causes dry eyes so I have the lubricant drops near my bed so I roll over and have to use them immediately or I will get cornia detachment from my eye cells sticking together. I haven't been able to open the tiny bottle or squeeze it. I wake up tired. I was told about 20 years ago I had Fibromyalgia but it went away after a little while and never had a problem but I do have muscle pain as well that I take an anti-imflammatory for.
Thanks Everyone ! I appreciate it!

Dear Abby,

Everything you say makes perfect sense.

Even with a clear-cut diagnosis you can't know for sure if treatment will or will not work. There are really so many variables that we unfortunately do not yet know how to assess or control.

your neurologist's approach sounds very reasonable. You sometimes have to make decisions in uncertain grounds, and you can't change it back and forth.

One of my neurologists really "drove me crazy" when he would say one day that there is no doubt in his mind that nothing else but MG can explain my symptoms, and then the next day that after thinking about it, he reached the conclusion that it's not MG. He did numerous SFEMGs (he was even ready to come in the evening to do one, so that I would be more weak) to try and find proof for what he clinically thought. He stopped all my medications (including mestinon) for a few weeks (after I had some improvement), and got me into another crisis. At some point I joked that it is a blessing he is not a gynecologist, because by the time he would decide if the woman is pregnant or not, the baby would finish college.

Medicine is not an exact science and neurology is one of the least exact fields. This neurologist clearly meant well, but his unreasonable need for exact scientific proofs led to serious management errors eventually, as he managed to confuse both me and himself. The muscle biopsy, he insisted on, led nowhere, other than to push me over the edge and require respiratory support.

It sounds like your neurologist is a sensible and caring physician.

Glad if I could have been of any help. It's so hard to know sometimes, if what you say on cyberspace (without seeing the person) is going to be helpful or the opposite.

Welcome, Mommyloves3.

MG is all about muscle weakness that gets worse with activity and better (relatively) with rest. It's pretty unique due to that. Other diseases don't fluctuate so much.

Since you have pain too, did they check your creatinine phosphokinase (CPK)? It's one of the test they do for polymyositis, another NM disease.

The tilt test is not an MG test but an autonomic system test.

They should check the MuSK antibody test as well. And the ACh antibody test can fluctuate. Do you have the copy of the results? If not, get them. Some doctors "pooh-pooh" a lower modulating antibody (even if it's above normal) and take a wait and see approach.

Have you had thyroid tests done? A cortisol level? B12? Though MG does make someone tired as well as weak, you should rule out other causes for it. If you are tired ALL day, chances are it's something like a B12 deficiency. When I had mine, I could hardly stay awake.

Also, a vitamin D deficiency is very common and can cause muscle pain.

The way you describe your symptoms, that you do something and then get worse, sounds like MG. As far as not having droopy eyelids, have you taken photos of yourself in the morning after being well rested and then later in the day? You may not even notice a difference if you think droopy is your "normal." And I had blurry vision that I thought was only my astigmatism but, in fact, it was double vision. A neuro-ophthlamologist pointed that out to me and did the testing that proved that.

If you do have MG, you'll have to be careful. If you get to the point of not being able to move, not breathe in AND/OR out well or cannot swallow, that's the time to go to the ER. We can have what's called a "myasthenic crisis" where our muscles get so weak that we need more care. If you're that bad, don't drive yourself in! MG can get rapidly worse and there's no way to tell when that will happen. Things like stress, overdoing it, infections, getting too hot or cold, not enough sleep and some drugs can make MG worse.

If you want to learn some more, go to www.myasthenia.org

The stickiness of your eyes sounds like Sjogrens. Did your eye doctor do the test where they put the little measuring "sticks" in your eyes to see how dry or not they are? Without enough acetylcholine, eyes can get dry too though.

Since you have shortness of breath, it would help greatly to see a pulmonologist. They can assess your breathing and tell you how bad it is. They can also do more MG specific tests like the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) that shows how you are doing at breathing in and out. If you have MG, you really need both a neurologist and pulmonologist. Seeing a pulmonologist would be help to further figure this puzzle out. If you have a breathing pattern that is clearly fatigable, it only adds to the clinical picture. And if you are really bad, they can do an arterial blood gas on you to see how that's affecting your overall body. You don't have to wait until you have a diganosis to see a pulmy!!

It might be useful to see your primary doctor for those basic tests for fatigue and maybe the CPK test I mentioned earlier. You might have MG but you might have something else going on too.

I hope you get answers soon. Are you on any drugs right now that might interfere with a Single Fiber EMG? Steroids, inhaled or tablet? You really should have that test done. In the meantime, take it easy. MG, if you have it, is nothing to mess with or "push."

Annie

Yes I had B12 & D tested as well as thyroid. And all is normal. Rheumy I went to said Myofascial pain syndrome but could not explain my other symptoms. He ran a muscle blood test and I was told negative. Will have to call to find out which one. I've had tons of blood work done for testing on a lot of things by several doctors.

I've seen 2 pulmonologists in the past and they tell me no asthma or breathing problems. 1 even said I may need a psychiatrist as it could be a mental thing. He said he had 1 patient who had breathing problems and tested fine and turned out to be psychological. That's when I quit going to pulmonologists. This was a couple years ago. At that time I didn't have much weakness just a little in my legs during my menstrual cycle. It wasnt until this past December did I get severe weakness all over.

Thank you so much!