I have been to a neurologist and had a positive EMG and single fiber test. He suspects MG based on physical exam and nerve tests. The office called yesterday and told me my bloodwork was normal, so I am assuming that means negative. I am not taking any MG meds currently, but have developed new symptoms over the past few days. Just wanted to check and see if these sounded MG-like or if I needed to look elsewhere.
I woke up feeling ok, potted a few flowers outside and did a few mundane things around the house. Even before I suspected MG I had learned to pace myself and do a little, rest a little.
By afternoon, I was feeling incredibly weak. My hands had a slight tremor in them. As the weakness progressed, I found myself wondering how I was going to get from point A to point B. Then my lower lip seemed to be sagging a little so that my mouth was slightly agape. At the same time, there were little twitches in my lower face around my mouth and chin area. My face felt very weak and the twitches were similar to when you are upset and about to cry and your chin twitches when you are trying to hold it back. My neck was also very weak and I wanted to lay my head over on something to help hold it up.
I felt all weak and twitchy inside my upper body as well. I have had two major episodes like this, but I don't know if these symptoms are MG related or not. I drank a large cup of coffee, after which I began to feel somewhat better, but as evening came on I started feeling weaker again.
This morning I was fine again.

As a trial, today I did not take my thyroid meds. I have had some mild weakness and mild twitching, but nothing nearly as alarming as yesterday.
I have had two cups of coffee so far today. Afraid too stray to far from the coffee pot so I do not have a repeat of yesterday. I have a twitch in my left hand when I try to do things with it, such as scratch my face, etc.

The other possibility is that my thyroid med dose is too high. I had it checked a couple of weeks ago because I was having a pounding heart along with palpitations, but the test came back within normal limits. Maybe the test was skewed and this is just hyperthyroidism from too much thyroid.

I go back to see the neurologist next Thursday. Just hoping I don't get too bad over the long weekend.
What does everyone think? Is twitching a symptom of MG? I have not had this twitching before.

Hi. I think it's worth having your thyroid checked again. Do you know what tests they ran last time? I ask because there's a lag in the TSH. A TSH test will tell you what your thyroid was like a couple of weeks ago, not what it's doing the day you have the test. If the ran a T4 and a T3, or best of all a free T4, then those tell you what your thyroid's doing now.

Try this: go to the mirror and stick out your tongue (that should get your day off to a good start, too). Do you see a tremor? A hyperthyroid tremor can be subtle, but you can always see it in the tongue. When I'm hyperthyroid (I have Graves, in and out of remission) I twitch like you're describing (like the about-to-cry thing). Also, check your fingernails: is there dirt trapped in them that's hard to wash out? Hyperthyroidism makes the nails grow fast and they separate early from the nailbed. But I've only noticed that in myself when I was pretty severely hyper for a long time.

Hyperthyroidism can cause muscle weakness, especially if you've had it long enough to actually lose muscle mass. But the weakness you describe sure sounds like MG to me, for whatever that's worth, especially the neck weakness and the sagging face. It's common enough to have negative blood tests for MG--plenty of us here tested negative (and some tested positive later). If you were diagnosed by nerve tests, I wouldn't doubt that.

There is a condition called thyrotoxic periodic paralysis (most common in Asian men) which causes episodes of weakness in people whose levels of thyroid hormone are too high. If you find out you are indeed hyperthyroid, and if you get the numbers under control and then all the symptoms disappear, that would be worth considering in retrospect. It's really rare.

I find that coffee helps my MG symptoms a lot. I hope they will try you on Mestinon, which is a drug that helps symptoms. It's very short-acting (it works for about four hours at a time). It's considered very safe, and many neuros will give it to a patient even if it's not established that the patient has MG, just to see if it helps.

I hope you and your doctors figure all of this out soon!

Abby

It is possible to have a positive EMG and negative bloodwork with MG. There are also multiple types of bloodwork that should be completed. My bloodwork has come back negative thus far (still waiting for the results of one test) and I ABSOLUTELY have MG. I occasionally I do get tremors in my hand and face from the muscle weakness. I am unfamiliar with thyroid concerns, but would absolutely talk to your doctor.

Best wishes,

Nicole

Thanks for answering me, Abby.
I think it may be a combo of the MG symptoms and elevated thyroid levels. I did have more tests than TSH, but they only gave me the TSH results and I don't remember what they were, but sounded OK to me. I was surprised because I was feeling so hyper thyroid and just knew that was what the problem was.
Again, I don't know if it is just a fluke, as I am pretty flukey, but I did not take my thyroid meds yesterday or today, and I felt improved yesterday, and just a little twitchy, and today so far have had no twitches or weakness at all. In fact I have been outside doing things I have been unable to do for a while now. I am coming back in to rest and stay hydrated.
I am actually trying to provoke a little weakness so I can see if it is the meds making me twitch.
I could just be experiencing a good MG day. It is so hard to figure out when you have overlapping conditions.
I appreciate your input and will post later how this experiment comes out.

I am hoping, too, that they at least let me try the mestinon to see if it makes a difference.
I looked at my tongue just now and it does twitch a little when I try to hold it still. Don't know if that is how it always does or not, since I have never checked it for twitches before.
Thanks,
Linda

My doctor tells me that being hyperthyroid can make MG much worse, though I haven't noticed that in myself.

Abby

Linda, Please quit guessing and playing with meds and go in! What if it wasn't the thyroid med? Going off of it can actually make MG worse!!!

The symptoms you describe are disturbingly similar to an MG crisis. If it had been me, I would've gone to the ER. Why? If the probability is high that you have MG, you aren't on meds and are getting worse, you can quickly go into an MG crisis.

An MG crisis is hard to predict. Yeah, a thyroid problem can cause MG to be worse but more than likely the lack of any meds is too!

You can have MG and not have positive antibodies. Did they do the MuSK antibody test? And please get your records!

Those sudden episodes of weakness are what precipitated my MG crisis. You may get better after you rest but that is deceptive!!! I had gotten so weak so slowly that I didn't even know I couldn't squeeze the fingers of the Urgent Care doctor. Within a matter of two hours, I crashed.

It doesn't matter if it's a holiday weekend. If you get worse, either dial 911 or have someone drive you (911 is better). Any MG expert will tell you that it's better to feel stupid with MG than to be on a vent!

Twitching muscles can be a sign of MG getting worse. It can be an electrolyte imbalance too.

And please stay out of the heat. If you are doing poorly, even a minute in hot weather can make you much worse.

I hope you will call your neuro and seek out help. MG is nothing to mess with.

Annie

Annie,
Thanks so much for your concern. Believe me, the ER crossed my mind more than once.
I felt fine all day yesterday, in fact almost normal. I took some thyroid meds this morning since I had been off it for two days. I have had some weakness, but not profound like before, and no major twitching. But I definitely feel that the thyroid meds are making me worse.
If I start to get back like I was before, I will definitely get attention.
I live in a very rural area, though, and if I call 911 they will come and take me to "Hooterville Hospital", which would probably worse than no care at all. If I go to the hospital of my choice, where I would get better care, I would have to drive myself because I am here alone due to the holiday weekend and everyone off on their own adventures. Don't worry, though. If I get feeling awful like I did the other day, I will definitely call someone to come get me.

Since I was feeling so good yesterday, I had big plans of doing all sorts of things today. I went to Walmart to get a few things I needed for my big plans. It was hot in the garden area and that made me feel weaker, so I got out of there and back into A/C which helped. I got myself home and in the house and my things are still in the car. But that has been my life for a while now. Even before I had even heard of MG or its symptoms, I have had to adapt to my fluctuating weakness and intolerance of heat.
I promise to be very careful till I go back to the doctor this week. Again, thank you for your concern.

Linda, I do understand the adapting thing, since I did it for years too. The problem is, however, that you've obviously gotten worse. And you aren't on any treatments. The one mistake you can make with MG is thinking you can control it.

I am concerned that you will go into a crisis soon. They are hard to predict and you can think you're okay when you're NOT. The only way I knew I was much worse right before my crisis were my oximeter readings. I have my own at home and they were not "leveling off" to a higher reading.

You can "teach" the hospital nearest to you at some point about how to manage MG. They can learn, they DID get medical degrees. If you do go into a crisis, you do want to have the closest hospital AND an ambulance take care of you. At the very least, the EMT's can give you oxygen. When you're in a crisis or close to one, oxygen feels like running through a cold sprinkler on a hot day.

Please don't fool yourself into thinking that - at least at this point in time - you can push yourself and you'll be "ok" after getting cooled off. MG doesn't work that way.



Annie