I am really struggling here - my neuro has decided my one sided facial droop and ptosis is not muscle weakness and just "me". He says he has seen Myasthenia and I don't fit despite my sending him hourly photos to show how both symptoms fluctuate throughout the day with activity/rest and also a very dramatic improvement after a 2-3min ice pack test. The only test for Myasthenia I have had us the AChR antibody test which was negative. I experience intermittent problems with chest pressure/breathing and legs feeling weak/like I've run a marathon and my knee giving out causing the "duck limp walk"! And occasionally my upper arms. Admittedly, I have always been (typically!) good when I've seen him and have done well on those resistance tests but at home my thighs will tremble if I lift them when they are bad and generally not want to work!

He now wants to see me on Tuesday, late at 6.45 and said to arrive early and do whatever I can to aggravate my symptoms so he can see for himself - I feel like I'm on trial to prove myself

So my questions are:
How good are those resistance test in indicating MG?

What would be a good 15min exercise? I'll try to be as active as possible before but I'm not looking forward to making myself feel rubbish

My neuro is easily 60 and very respected, he says he has seen Myasthenia so maybe I am wrong and this isn't my answer? Or maybe he is old-school and wants a positive test/or to see things a certain way? He has refused to do an EMG/SFEMG until he sees what he feels is weakness?

Thanks again for all of your help - any advice would be greatly appreciated

Hello Unsure I know it's not particularly helpful but I can think of a whole bunch of people who could have written your post. I'm hopeful that they can offer how they handled your similar experience.

Before I comment, I would like to know if anyone accompanied you to this appointment. I know it can be difficult to find a person who is available.

I am so sorry you are having such a struggle. I have seen so many posts by MGers or possible MGers in the same situation. Please don't be annoyed that I have cut and pasted some of this from previous similar post. But here goes:

I am seronegative too. I was diagnosed by a single fiber EMG. I have a couple recommendations for you:
1. Go see a neuromuscular specialist at a large teaching hospital that specializes in MG or diseases of the neuromuscular junction. I go the the neuroscience center at Jefferson University hospital. MG is very rare and most neuros have never seen it. And MG is called the snowflake disease because it presents differently in every patient. So maybe your neuro has seen it a couple of times before, but maybe he is judging you based on just those couple of patients. Going to a teaching hospital where they see it all the time is very important especially if you are not the typical presentation like me in being sero-negative.
2. Statistics show that only 85% of MGer EVER show positive antibodies. And new MG patients may be seronegative at first and then turn positive later. You don't want to have to wait months or years for treatment waiting for the antibodies to be positive.
3. There are several different antibodies to the neuromuscular junction. ACH antibodies is the most prevalant-the commercial blood test done. Musk is probably the next highest. But there are others that have been identified in research that they do not even have commercial tests for. Teaching hospitals are more up in the current research and are more aware of these cases.
4. The single fiber EMG is the definitvie diagnostic test for MG no matter which antibody you have. This test can only be performed and interpreted by very experienced neurologist that you will find at a large teaching hospital.

You as the patient should not have to "prove" anything, although MGers are often put in this situation. I am hesitant to say exaccerbate your symptoms so the doctor can see them. You can put yourself in a dangerous situation if your breathing muscles are affected. I know for myself that after more than normal physical activity, I can usually get through the day but actual show the worse exaccerbation 24-48 after the activity. The resistance test are only a subjective measure, unless they have a baseline of where you were before MG, I not sure how well they can be interpreted.

My first neuro simply said the antibodies are negative, it is not MG. The neuromuscular specialist at a large teaching hospital did an SFEMG and had no doubt it was MG. The key to the testing is repetitive testing to see the declined response as the muscle repeat the test. I do not think a lot of patients who go to doctors that are not MG specialist get adequate repetitive testing to see that.

I have to travel more than a 3 hr round trip to see the neuromuscular specialist. But it is well worth it. Once you get the definitive diagnosis, your local doctors will me much more accepting of a definitive diagnosis from a highly acclaimed specialist in the field that you will no longer get the scruitiny. The local doctors can manage you based on the neuromuscular specialist recommendations.

Good luck and let us know how you do,
kathie

I'm one of those who could have written your post. I was negative on all tests but my neuro told me that around 10 percent of people with MG are negative on all tests. The "proof" for me was a trial of Mestinon. It produced immediate improvements. I would suggest that you ask your neuro about trying it. If you have MG it will produce results no matter what the tests say.

Sounds like the 2 Neurologists I was seeing. They even wanted me to see a Psychiatrist. They acted like I just wanted to get out of work. Yeah, I want to jeopardize losing my job & health benefits! I did see a Rheumatologist who believes me and told me my weakness & symptoms couldn't be caused by Depression. Also have been having tremors in my right hand, loss my sense of taste & smell, and shuffling gait, along with my other symptoms, which looks like it maybe Parkinson's instead of Myasthenia which explains why my MRI, EMG, and antibodies were negative. Just hang in there in the meantime. I go back to my Rheumatologist June 3rd so maybe we can figure what to do next.

My suggestion would be to start over with a new neurologist. You don't need that kind of treatment!

Good luck!

My sister saw one of the most respected MG Drs at Duke and he saw her sagging face and said it wasn't MG related. He gave her EMG and it came back borderline so he told her she didn't have MG. Hogwash even in his book he wrote that a negative EMG did not mean a person did not have MG. She is now on Mestinon and does great on it.
Keep plugging away you will get results.
Mike

I think all of us need to step back and try to understand the expertise of a neurologist who has gone to school for many years and treated very many patients (no doubt saving many a life and leaving no patient to die prematurely of a respiratory crisis!).

Now, let's start with this:

The following link contains a very famous picture from Posey & Spiller which is known as the "face of myasthenia":


http://www.myasthenia.org.au/html/symptoms.htm


But is this really the face of myasthenia because of the ptosis?

We can determine that it is not. "Unsure81" has "just me" ptosis. Pingpongman's sister had "non-MG-related" sagging face disease, (a condition which is, like Myasthenia, successfully treatable with Mestinon!)

Undoubtedly, there are many different kinds of ptosis and droopiness and also other clues in every patient's face which every competent neurologist can analyze on the spot -- leading to the most amazing conclusions!

There is always more to every simple picture than what meets the eye, to wit:

http://www.moillusions.com/2013/05/p...-illusion.html

At first you see only a fox, but if you look closer, you can see human heads and a variety of animals.

A neurologist's evaluation follows similar principles with the following caveat: when a neurologist looks at your face, he can see things nobody else could even dream existed there -- and not see things everyone else sees!

So, Unsure81, if you should want a really exhausting "exercise", try figuring out the difference between the Posey & Spiller "face of myasthenia" and "just me" ptosis.

Nobody on here can know certainly what you have but it's a good idea to know how the most competent and experienced neurologist must practice his craft.

This is tongue in cheek. Sorry, I'm just in that kind of mood today. But the upshot is just that it can be tough to have a serious conversation with a neurologist

The first neruro I saw did not think I had MG. I had started seeing him for new onset migraine headaches and the beta blocker he put me on for headache prevention brought on the ocular symptoms. When I complained about the ptosis and double vision he did send me to an opthalmologist for consult.

The opthalmologist strongly felt I did have MG and wanted me to have a Tensilon test to confirm. Plans were made to send me to Mayo Clinic. While arrangements where being made for this appointment, my symptoms were progressing quickly. I started having slurred speech, facial drooping and chest heaviness at night. My neuro's office told me to go to the ER for breathing problems.

I did some research and found some neuromuscular experts about 90 min away. I would not have to get an insurance approval if I saw them in the ER. So, my husband drove me there and one of the MG experts was on call that day. I had a positive Tensilon test in the ER and he admitted me for 2 days to do bloodwork and a repetitive nerve conduction study. I was started on mestinon and prednisone.

I am seronegative so far.

Sometimes you have to take matters into your own hands
BTW: My first neuro was very apologetic.