[Denise9293]

Since December 2013, I have had extreme fatigue and muscle weakness in my limbs. Also experience trouble swallowing and shortness of breath. My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal. How can I just accept that diagnosis without proof?

[AnnieB3]

Hi, Denise. Welcome.

Which tests were done?

Since you're short of breath, have you consulted with a pulmonologist to have breathing tests done, especially those specific to MG such as MIP and MEP? If not, I highly recommend that you do that!

Do you have ptosis or double vision? If so, you can see a neuro-ophthalmologist and they can assess if DV the ptosis is fatigable (which is specific to MG/CMS).

How much Mestinon are you taking? Don't make changes without speaking to your neuro, but sometimes it helps to begin with a lower dose initially. The use of Mestinon can be tricky and too much of it will make an MGer worse. The twitchy side effects might wear off after a week or so. How long have you been taking it? The cramping might be from too much of it.

How long have you had symptoms? Sometimes antibodies don't show up until later in some people. Did they do the AChR and MuSK antibodies?

I would have a hard time accepting a diagnosis without some proof, too. But that doesn't mean that proof doesn't exist. There's also the anecdotal proof of taking a photo of your face before Mestinon and then after taking it, to see if any ptosis of eyelids or eyebrows (or nose) improves.

If your symptoms get much worse, such as not being able to breathe in or out well, you need to dial 911. And if you have MG, you shouldn't be out in the hot weather because that makes MG much worse.

Have you had your B12 level or thyroid checked?

Sometimes it really helps to have doctors other than a neurologist assess your symptoms. It reassures you, and gives you more evidence of a disease. Plus, a pulmonologist is vital to have to periodically check on you. They also know that when you're short of breath that you need pulmonary tests right away, and can usually have standing orders for that, whether you have an appt. or not.

Is your neuro an MG expert?

I really hope you can feel better and have more evidence. In the meantime, take it very easy!

Annie

[Denise9293]

Originally Posted by AnnieB3

Hi, Denise. Welcome.

Which tests were done?

Since you're short of breath, have you consulted with a pulmonologist to have breathing tests done, especially those specific to MG such as MIP and MEP? If not, I highly recommend that you do that!

Do you have ptosis or double vision? If so, you can see a neuro-ophthalmologist and they can assess if DV the ptosis is fatigable (which is specific to MG/CMS).

How much Mestinon are you taking? Don't make changes without speaking to your neuro, but sometimes it helps to begin with a lower dose initially. The use of Mestinon can be tricky and too much of it will make an MGer worse. The twitchy side effects might wear off after a week or so. How long have you been taking it? The cramping might be from too much of it.

How long have you had symptoms? Sometimes antibodies don't show up until later in some people. Did they do the AChR and MuSK antibodies?

I would have a hard time accepting a diagnosis without some proof, too. But that doesn't mean that proof doesn't exist. There's also the anecdotal proof of taking a photo of your face before Mestinon and then after taking it, to see if any ptosis of eyelids or eyebrows (or nose) improves.

If your symptoms get much worse, such as not being able to breathe in or out well, you need to dial 911. And if you have MG, you shouldn't be out in the hot weather because that makes MG much worse.

Have you had your B12 level or thyroid checked?

Sometimes it really helps to have doctors other than a neurologist assess your symptoms. It reassures you, and gives you more evidence of a disease. Plus, a pulmonologist is vital to have to periodically check on you. They also know that when you're short of breath that you need pulmonary tests right away, and can usually have standing orders for that, whether you have an appt. or not.

Is your neuro an MG expert?

I really hope you can feel better and have more evidence. In the meantime, take it very easy!

Annie

Thanks, Annie! I am seeing a Neuromuscular specialist tomorrow. You raise some good points as I have not seen a pulmunologist yet. I have had blood tests for every conceivable problem (including MuSK antibodies). But you also raise a good point in that my symptoms started in January and I had most of the tests in February so maybe it was too soon to show up. I will mention that to the doc tomorrow. Thanks for pointing me in a couple of other directions and for the kind words! You take good care of yourself, too.

[pingpongman]

My first blood work was negative but 6 months later it was positive.
Mike

[AnnieB3]

REALLY positive! Can't you share some of your various antibodies with Denise?

[pingpongman]

After my second test being positive, as time passed on I became positive for 4 antibodies stiational, calcium, binding and modulational. I'm pretty much a mystery to my doctors. My mother and 2 of her sisters had MG. My sister now has it. I am lucky to not have a crisis yet. I am currently on cellcept and mestinon. They help me make it through daily life nothing more. I am a shell of my old self.
Mike

[Clareb]

Hi Annie

I was interested to see your comments on PI Max & PE max. I am 47 & have had mild lupus for many years. In 2012, the condition seemed different in many ways but most disablingly weakness in arms, legs, torso. Aspiration at night and then most recently respiratory problems & very slight intermittent ptosis. PI max is 18.4 cms and PE Max 23 cms. 6 months ago they were 32 cms & 51 cms h20. Sniff test indicates that I have a weak diaphragm. I am anti achr negative and my SFEMG was not supportive of MG although the RNS showed 'decrement which seems a bit artefactual' which I think means operator error. I don't feel convinced that I have MG but I'm pretty sure that there is more than normal fatigability in my chest/arm muscles.

I just don't know whether or not to bash my way through the uncertain doctors or sit it out a bit longer to see if things settle or worsen. My resp doc thinks there probably is a neurological cause but doesn't know what so is sitting on the fence. Your thoughts would be really helpful.

Many thanks, Clare

Originally Posted by AnnieB3

Hi, Denise. Welcome.

Which tests were done?

Since you're short of breath, have you consulted with a pulmonologist to have breathing tests done, especially those specific to MG such as MIP and MEP? If not, I highly recommend that you do that!

Do you have ptosis or double vision? If so, you can see a neuro-ophthalmologist and they can assess if DV the ptosis is fatigable (which is specific to MG/CMS).

How much Mestinon are you taking? Don't make changes without speaking to your neuro, but sometimes it helps to begin with a lower dose initially. The use of Mestinon can be tricky and too much of it will make an MGer worse. The twitchy side effects might wear off after a week or so. How long have you been taking it? The cramping might be from too much of it.

How long have you had symptoms? Sometimes antibodies don't show up until later in some people. Did they do the AChR and MuSK antibodies?

I would have a hard time accepting a diagnosis without some proof, too. But that doesn't mean that proof doesn't exist. There's also the anecdotal proof of taking a photo of your face before Mestinon and then after taking it, to see if any ptosis of eyelids or eyebrows (or nose) improves.

If your symptoms get much worse, such as not being able to breathe in or out well, you need to dial 911. And if you have MG, you shouldn't be out in the hot weather because that makes MG much worse.

Have you had your B12 level or thyroid checked?

Sometimes it really helps to have doctors other than a neurologist assess your symptoms. It reassures you, and gives you more evidence of a disease. Plus, a pulmonologist is vital to have to periodically check on you. They also know that when you're short of breath that you need pulmonary tests right away, and can usually have standing orders for that, whether you have an appt. or not.

Is your neuro an MG expert?

I really hope you can feel better and have more evidence. In the meantime, take it very easy!

Annie

[uncledave]

Originally Posted by Denise9293

Since December 2013, I have had extreme fatigue and muscle weakness in my limbs. Also experience trouble swallowing and shortness of breath. My neurologist was at a loss but decided to try Mestinon. Symptoms have improved some but I now have twitchy eyes and muscle cramps from the med. I was told that 5% of MG patients test normal. How can I just accept that diagnosis without proof?

My neuro told me that somewhere around 10 percent of MG sufferers are negative on all tests. They are diagnosed by presenting symptoms and response to mestinon.

[mom2mba]

That is what the specialist in the hospital told me. He diagnosed me with Tensilon but all other tests have been negative. The problem I am having is that no outside neurologist will treat me. Apparently they don't believe in the 10-15% negative MG.

[pingpongman]

Keep hunting, you will find one with a brain. Maybe
Mike