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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - EMG results (https://www.neurotalk.org/myasthenia-gravis/148934-emg-results.html)

They did the RNS and the EMG on my face and on my arm. Both negative. Back to square one. He says I do not have MG - but the symptoms are still there. I am guarded with this diagnosis of not having MG. If I do have it, then time will tell, then we can go from there I guess. The tests were tolerable, but not something I would want to do again.

Quote:

Originally Posted by teelae (Post 764414)

The practical question is- what are your symptoms, and what does he think explains them? And also what does he suggest to do with them treatment wise.

Quote:

Originally Posted by teelae (Post 764414)

I'm sorry you didn't get answers. I know how painful that can be. I think you're exactly right to be guarded about this--to accept it for now but to keep the possibiliyt of MG in mind down the road if things change. For me, everything was unclear for the first year--my symptoms didn't seem typical (I had mostly balance troubles, due to weakness in my side muscles, but I didn't realize it was the side muscles that were making me tilty). As time went on, my symptoms did get more typical.

Also, my neurologist was content to leave me with no diagnosis as long as I seemed able to live with the symptoms--but at some point I came to him and said, "Look, this is really interfering with my life. I am getting worse. We need to do something." Then he escalated the investigation, sent me out of state to a different expert, talked about doing a course of IVIG diagnostically.

What I'm trying to say is that there was a time when I felt like I'd come to the end of the road, and no one was willing to go further with me. But it turned out there was a whole other level of care that was available to me when I made it clear that I needed it.

Abby

Hang in there Teelae:hug:
I know it's frustrating but don't give up. I was hoping the EMG would give the results you are searching for. Keep working with your Neurologist and other physicians to get some type of diagnosis. Many on here understand and also know that sometimes it takes longer to find out what's going on in order to come up with the correct treatment plan for whatever condition you have.

Loving Hugs,
Shari

Quote:

Originally Posted by alice md (Post 764451)

The practical question is- what are your symptoms, and what does he think explains them? And also what does he suggest to do with them treatment wise.

He says my symptoms should be more pronounced - even if in the beginning of MG and even if my MG is mild. So, because they are NOT more than what they are at present, and because my Ach test was negative the second time (he says the first positive was probably an error), and because the muscle tests were negative, he is content to say I do not have MG. He is also an MG specialist. I told him I am having esophagus troubles now, but because it is not following the mainstream, he says it is not MG. He says I should see and ENT. I told him, I have had the barium swallow, plus the endoscope and all was normal - yet the symptoms exist, especially about it feels like it is kind of "laying" on itself in spots when I lie on my side and liquids (cold) do not go down smoothly all the time now. I also had a few episodes around Christmastime when my food took about 12 hours to get down the esophagus. It seemed like it was stuck at the level of the sternum for hours, then SLOWLY, it started to resolve, it took about 12 hours to get that broccoli down. It just felt stuck. He says even in the beginning stages, I would be showing more symptoms than I am, and I do not have ptosis, yet my eyes will blurr going from one eye to the other for no reason, and then suddenly clear. I have had a couple episodes of vertical double vision (kind of like seeing half of the letter B on top of another letter B - so not two complete sets), that was back in September, and nothing since. Yesterday, I noticed my left eyelid drooping ever so slightly, but definately noticeable to me (I was tired) I took a picture of myself, so I have that, and it does show. In the beginning, back in October, I woke one morning, and I could not close my left eyelid just briefly, that started the eye appt, and then to the neurologist and then on and on to MG. This current neuro told me that MG is all about not being able to keep the eyelid OPEN - not being unable to close the eyelid briefly, which is another reason the MG is being dismissed. I have other symptoms of thigh and arm fatigue, but because it is intermittent and I am still able to function, it is not MG according to him. Also, I have noticed that I am almost totally not able to function in the heat. I simply can not hardly keep moving. I DO keep moving, but it just zaps me. I did not tell him this. Even in the bathtub, now my baths are warm and short. I don't know, maybe he is right. Help.

alicemd, steelatum and sheri

Quote:

Originally Posted by alice md (Post 764451)

The practical question is- what are your symptoms, and what does he think explains them? And also what does he suggest to do with them treatment wise.

aliceMD, steelatum and sheri, please see my reply - thank you very much for your input.

Teelae, MG affects all of the skeletal muscles. There are 640 of them. Which ones it decides to attack first is up to MG. ;)

The best way to deal with anything medical, including doctors, is by HOW YOU THINK. Dissect the problem, like you would any other problem.

First you have to understand muscles, specifically the eye muscles:

http://www.anatomy.tv/StudyGuides/St...ustomer=primal

The Orbicularis Oculi muscle closes the eye. If it is too weak, the eye won't close. Duh.

The Levator Palpebrae Superioris muscle opens the eye. Again, if it is too weak, the eye will not open.

So what your doctor said was not only not true but not logical. And his statement about things being more pronounced . . . well, that is why there is the Osserman Criteria/Scale. MG can be anywhere from mild to severe. It can be that way in ONE PATIENT. You can be mild in the morning and severe by evening. Or you can be fine on Monday and be unable to walk up stairs on Wednesday. Good grief. There is no exacting algorithm for MG!

Go to Google and enter "Kermit Osserman Ocular MG" and go down to the PDF of Ocular Myasthenia Gravis. It's too big a file to put up here. If anyone is an expert on MG, it was Dr. Osserman.

When some people sleep, they can squish their faces into their pillows, making those muscles heat up and get weak. Or you could have particularly dramatic rapid eye movement during sleep which could make your muscles weak.

Not all of the eye muscles need to get weak at the same time! Oy.

The one thing about MG is that it is unpredictable. It is fatigable. Muscle weakness that fluctuates is never normal.

My suggestions? Go see a neuro-ophthalmologist. If you have shortness of breath, get breathing tests by a pulmonologist, including MIP and MEP. Explain that, will you guys? Get a 3rd antibody test in a month or when you are doing badly. An internist can run one. Where was the first test done? The second? Do you have copies of both? Did they do the binding and the modulating antibodies? Which was positive. You have to ask LOTS of questions while doctoring.

In the meantime, ask your internist to run a thyroid panel, including the thyroid antibodies. Graves can cause the inability to close eyes too.

Those are my thoughts. I hope you can get someone to help you figure out what this is. It's not always easy to figure MG out, especially in the early stages. Oh, and I've had both positive and negative antibody tests. The negative does not negate the positive. MG fluctuates, like any autoimmune disease. Sometimes the antibodies circulate in the blood, coming out to play for those tests and sometimes they're too damn busy attacking the neuromuscular junction!

Annie

AnnieB3, you may very well be my favorite person in this world. :hug: Thank you for such a precise and understandable explanation. I think I will print it out for all those times I start to think I've lost my mind. :winky:

[QUOTE=AnnieB3;764970]Teelae, MG affects all of the skeletal muscles. There are 640 of them. Which ones it decides to attack first is up to MG. ;)

The best way to deal with anything medical, including doctors, is by HOW YOU THINK. Dissect the problem, like you would any other problem.

First you have to understand muscles, specifically the eye muscles:

http://www.anatomy.tv/StudyGuides/St...ustomer=primal

The Orbicularis Oculi muscle closes the eye. If it is too weak, the eye won't close. Duh.

The Levator Palpebrae Superioris muscle opens the eye. Again, if it is too weak, the eye will not open.

So what your doctor said was not only not true but not logical. And his statement about things being more pronounced . . . well, that is why there is the Osserman Criteria/Scale. MG can be anywhere from mild to severe. It can be that way in ONE PATIENT. You can be mild in the morning and severe by evening. Or you can be fine on Monday and be unable to walk up stairs on Wednesday. Good grief. There is no exacting algorithm for MG!

Go to Google and enter "Kermit Osserman Ocular MG" and go down to the PDF of Ocular Myasthenia Gravis. It's too big a file to put up here. If anyone is an expert on MG, it was Dr. Osserman.

When some people sleep, they can squish their faces into their pillows, making those muscles heat up and get weak. Or you could have particularly dramatic rapid eye movement during sleep which could make your muscles weak.

Not all of the eye muscles need to get weak at the same time! Oy.

The one thing about MG is that it is unpredictable. It is fatigable. Muscle weakness that fluctuates is never normal.

My suggestions? Go see a neuro-ophthalmologist. If you have shortness of breath, get breathing tests by a pulmonologist, including MIP and MEP. Explain that, will you guys? Get a 3rd antibody test in a month or when you are doing badly. An internist can run one. Where was the first test done? The second? Do you have copies of both? Did they do the binding and the modulating antibodies? Which was positive. You have to ask LOTS of questions while doctoring.

In the meantime, ask your internist to run a thyroid panel, including the thyroid antibodies. Graves can cause the inability to close eyes too.

Those are my thoughts. I hope you can get someone to help you figure out what this is. It's not always easy to figure MG out, especially in the early stages. Oh, and I've had both positive and negative antibody tests. The negative does not negate the positive. MG fluctuates, like any autoimmune disease. Sometimes the antibodies circulate in the blood, coming out to play for those tests and sometimes they're too damn busy attacking the neuromuscular junction!

AnnieB3
I will look all that stuff up and I will get an appt with an opthamologist-neuro and I will get repeat blood tests. I cannot begin to tell you how grateful I am for your input. Teelae

Hi,

I apologize for the time it took me to answer. I fully agree with everything that Annie said.

Quote:

He says my symptoms should be more pronounced - even if in the beginning of MG and even if my MG is mild.

There is no should in medicine. Not even in my field of practice (hematology) which is much more accurate. There is what there is. Physicians have to figure out what patients have, and not patients have to fit into what physicians think. very few patients actually "read the book" before they become ill.
More then that, there is no objective test to assess how pronounced MG symptoms are. the severity of MG is assessed by very subjective physician and patient parameters. lack of proper communication (which is quite common in MG, as it is very hard to explain those bizarre symptoms) can easily lead to underestimation or over-estimation of severity. Even more so in the early days of this illness, when you have no clue what the heck is going on.

Quote:

Ach test was negative the second time (he says the first positive was probably an error), and because the muscle tests were negative, he is content to say I do not have MG.

Even if it so (and your AchR ab. test was negative as was your EMG) this does not rule out MG. It is possible to have MG with completely normal tests. In fact, statistically it is probably so in about 5% of MG patients.

Quote:

He is also an MG specialist

Forgive me for my sarcasm, but I am not sure what that means. My current neurologist is not a "formal" MG specialist. He is just an excellent, caring and dedicated physician. And for the first time in 6 years (after being under the care of the best MG experts in the world) I feel that someone really understands me and my illness.

Quote:

I told him I am having esophagus troubles now...

From my experience, having new symptoms or worsening of your existing symptoms just convinces those MG experts more that your illness is not real. why is that? I don't know, but I am guessing that it makes them think that you are trying to convince them that you are really ill, and that in itself is proof that you are not (sort of a catch 22 situation). But, when you realize that this is what is happening it is a good time to find someone else, as I can reassure you that even if you collapse in front of their eyes, hardly able to breath, it will be further proof for their assumptions.

Quote:

I do not have ptosis, yet my eyes will blurr going from one eye to the other for no reason, and then suddenly clear...

Many neurologist don't know that there are less common ocular symptoms of MG. They also think that it should not affect the muscles of the pupils or accommodation. Many of them don't let the facts (that it does) confuse them. Many of them look for ptosis only using a single test (which is telling you to look up at their finger). when there are numerous other tests that can and should be done.

Quote:

This current neuro told me that MG is all about not being able to keep the eyelid OPEN - not being unable to close the eyelid briefly, which is another reason the MG is being dismissed.

To the best of my knowledge, the SFEMG test (they are so fond of) is based on checking the muscles that keep the eyes closed! So, how exactly can he say that those muscles are not involved in MG?

Quote:

I have other symptoms of thigh and arm fatigue, but because it is intermittent and I am still able to function, it is not MG according to him.

This is exactly what MG is-intermittent!!!

Quote:

Also, I have noticed that I am almost totally not able to function in the heat. I simply can not hardly keep moving. I DO keep moving, but it just zaps me. I did not tell him this. Even in the bathtub, now my baths are warm and short.

This is very typical of MG.

Quote:

I don't know, maybe he is right.

I don't think he is. It would be fine if he had a reasonable alternative diagnosis to explain your (what sounds like very typical MG) symptoms. But, it doesn't seem that he does.

Quote:

Help

From my experience, the only good advice I can give you, is find someone else. I may be wrong, but from the way you describe it, this doesn't sound like he is puzzled by your symptoms, trying to find a reasonable explanation, helps you deal with this frustrating situation, suggests at least symptomatic treatment. For him it is either you fit his book or you don't.

You need someone to be your partner in this, not someone that will make you doubt yourself and what you are experiencing. This in itself can be extremely damaging.

Hi!
As Alice has pointed out, a negative SFEMG and negative antibody test does not necessarily rule out MG. I wish I had had this knowledge when my symptoms presented eight years ago. Prior to my testing, my neuroophthalmologist was "positive" I had MG. When tests came back negative, the possiblity of MG was dropped. He said that the SFEMG was the "gold standard" for diagnosing this disease.

My symptoms continued for years, intermittently, though MG was never reconsidered with this MD. I eventually sought out other neurologists, but it took me until last year to get a diagnosis of MG (with a positive tensilon test)and start treatment. Again, my SFEMG was negative. I've also had a positive response (though certainly not optimal) to mestinon, prednisone, and IVIG. I've recently started azathioprine, but my neurologist has told me that my response may be limited, possibly due to the 8 year delay in treatment.

Quote:

You need someone to be your partner in this, not someone that will make you doubt yourself and what you are experiencing. This in itself can be extremely damaging.

Alice's advice is right on. Don't doubt yourself and your symptoms. Find a neurologist that will work with you, help you find answers, and provide treatment.

Cate

Quote:

Originally Posted by alice md (Post 765218)

Hi,

I apologize for the time it took me to answer. I fully agree with everything that Annie said.

There is no should in medicine. Not even in my field of practice (hematology) which is much more accurate. There is what there is. Physicians have to figure out what patients have, and not patients have to fit into what physicians think. very few patients actually "read the book" before they become ill.
More then that, there is no objective test to assess how pronounced MG symptoms are. the severity of MG is assessed by very subjective physician and patient parameters. lack of proper communication (which is quite common in MG, as it is very hard to explain those bizarre symptoms) can easily lead to underestimation or over-estimation of severity. Even more so in the early days of this illness, when you have no clue what the heck is going on.

Even if it so (and your AchR ab. test was negative as was your EMG) this does not rule out MG. It is possible to have MG with completely normal tests. In fact, statistically it is probably so in about 5% of MG patients.

Forgive me for my sarcasm, but I am not sure what that means. My current neurologist is not a "formal" MG specialist. He is just an excellent, caring and dedicated physician. And for the first time in 6 years (after being under the care of the best MG experts in the world) I feel that someone really understands me and my illness.

From my experience, having new symptoms or worsening of your existing symptoms just convinces those MG experts more that your illness is not real. why is that? I don't know, but I am guessing that it makes them think that you are trying to convince them that you are really ill, and that in itself is proof that you are not (sort of a catch 22 situation). But, when you realize that this is what is happening it is a good time to find someone else, as I can reassure you that even if you collapse in front of their eyes, hardly able to breath, it will be further proof for their assumptions.

Many neurologist don't know that there are less common ocular symptoms of MG. They also think that it should not affect the muscles of the pupils or accommodation. Many of them don't let the facts (that it does) confuse them. Many of them look for ptosis only using a single test (which is telling you to look up at their finger). when there are numerous other tests that can and should be done.

To the best of my knowledge, the SFEMG test (they are so fond of) is based on checking the muscles that keep the eyes closed! So, how exactly can he say that those muscles are not involved in MG?

This is exactly what MG is-intermittent!!!

This is very typical of MG.

I don't think he is. It would be fine if he had a reasonable alternative diagnosis to explain your (what sounds like very typical MG) symptoms. But, it doesn't seem that he does.

From my experience, the only good advice I can give you, is find someone else. I may be wrong, but from the way you describe it, this doesn't sound like he is puzzled by your symptoms, trying to find a reasonable explanation, helps you deal with this frustrating situation, suggests at least symptomatic treatment. For him it is either you fit his book or you don't.

You need someone to be your partner in this, not someone that will make you doubt yourself and what you are experiencing. This in itself can be extremely damaging.

Thank you with all my heart for the thorough and thoughtful way you addressed my concerns I wrote about. I agree with you, I am beginning to see that just because he is the MG specialist, does not mean that I am not being dismissed because I am not "typical". I do believe that is just what happened too. I have every intention of seeking out another neurologist. This is becoming all to clear to me. What a nightmare, but I am learning. Teelae