Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 09-18-2014, 01:59 PM #11
AnnieB3 AnnieB3 is offline
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JJ, You can have a Schirmer's test to see if your eyes are dry. It's pretty standard here in the US.

http://www.nlm.nih.gov/medlineplus/e...cle/003501.htm

Eyes can also be dry from not enough acetylcholine, just as too much can cause tearing.

Twitching eyelids can be from MG, a nerve issue, electrolyte imbalance, eyestrain, and a lot of other causes.

Annie
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Old 09-19-2014, 03:46 AM #12
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It is interesting. I had never heard of Blepharospasm before this consultation. Naturally I have researched it since. Normal level of blinking is 10-20 per minute. Mine is up around 60 per minute, so as far as that goes the specialist is correct.

However I can find NO article anywhere that states that blinking can cause diplopia. Indeed all the comments are that the treatments for blepharospasm cause diplopia, ptosis etc. And the only treatment seems to be Botox every 2 months until it stops working, then nothing.

On the other hand I did find several articles about MG mimicking blepharospasm, and since I have symptoms of fatigable muscles, in arms and legs, I am still not convinced.

I think the chances of having 2 "rare" conditions surfacing at the same time, whilst possible, is unlikely. Especially when 1 of those rare conditions can adequately explain all the symptoms.
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Old 09-20-2014, 10:11 AM #13
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DO NOT let your doctor treat you with Botox until Myasthenia has been definitively ruled out!!!!!

Botox is contraindicated for people with MG, and can cause real harm.

If your initial tests come back negative for MG - as is the case for 10-20% of people with MG - ask your doctor to let you do a Mestinon trial.
About the only people who can tolerate even a small amount of Mestinon are people with MG; if you can take it without getting violently ill, chances are that you have MG.

Did your neuro-opthamologist do an ice pack test on your eyes? That seems to be the test that "catches" a majority of MG cases which present with ocular symptoms.
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Old 09-20-2014, 12:50 PM #14
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Totally agree with Teresa - botox and MG = an opportunity visit the ER. If in doubt, read the contraindications on Botox label. It has a warning (I think it might even be a black box warning!)
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Old 09-21-2014, 05:51 AM #15
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Teresa, Suev, thanks to you both. That was my feeling, butI am interested in a couple of things that you said Teresa, not sure if you can elaborate on them.

Quote:
About the only people who can tolerate even a small amount of Mestinon are people with MG; if you can take it without getting violently ill, chances are that you have MG.
Is this true. If so I was not aware of it. My GP has so far refused to do a Mestinon trial, even though I have point blank asked for it.

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Did your neuro-opthamologist do an ice pack test on your eyes? That seems to be the test that "catches" a majority of MG cases which present with ocular symptoms.
No they didn't. It hadn't occurred to me that the ice pack test might be useful. I had assumed that it only worked for Droopy eye. Until this appointment I hadn't realised that I had blinking eyelids, so hadn't expected ice to help diplopia. Now I will try it and see if if slows the blinking rate.
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Old 09-21-2014, 09:56 AM #16
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Julie,

Where are you located? Do you pay for your own insurance?
If you are in the US and you (or your employer) pays for your insurance, you are WELL within your rights to request a Mestinon trial.

If your GP doesn't want to do one, ask him/her to give you detailed reasons for not doing it, and have them put it in writing.

People forget that doctors provide a service - one that is specialized, yes, but there are plenty of doctors out there - and that the patient, as the CUSTOMER, is still free to take their business (and their dollars) elsewhere.

For those of us who tested negative for MG, but who had the symptoms of it, a Mestinon trial was the ONLY way that we got diagnosed. With MG, an early diagnosis is crucial - the earlier the patient can start on medications to (hopefully) slow the effects of the disease, the better chance there is that the disease can be stabilized.

Also, there are several different medications - including many anesthetics - which are absolutely contraindicated for people with MG. If a person knows that they have MG, they can be proactive with their medical care - especially if they need to have surgery (and most doctors will not perform elective surgery on a patient with MG).

If you suspect you have MG, let your doctor know that you want a Mestinon trial, and if he/she doesn't let you do it, tell them in no uncertain terms that they could be held liable if it is later found that you DO have MG and they refused to do everything they could to absolutely rule it out.

Trust me, if you don't have MG, it will only take one or two tablets of Mestinon before YOU decide not to take any more of them - you'll feel pretty awful for a couple of hours!

Be sure if you do a Mestinon trial that you start out with 1/2 a pill (30 mg) for the first "test"; my neuro had me do 30 mg, once a day for three days (and suggested I take it in the evening when my muscles were more fatigued), then if I could tolerate that to bump it up to 60 mg a day for 3 days, then 90 mg a day for 3 days, then 120 mg a day for 3 days.

If at any time during the trial I started feeling ill, I was advised to drop back down to the dosage I could tolerate.

Once a patient figures out what dosage they can tolerate, then they can set about to determine what time interval works best for them. Mestinon is one of those medications where more is definitely NOT better in terms of dosage; rather most MGers find that if they need "more" (and you'll know it when that happens), they can get it by shortening the time between doses.
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Old 09-21-2014, 11:05 PM #17
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I was dx'd by clinical observation and strength testing. MG was suspected.

So they gave me 60mg Mestinon and a PA waited 30 min in the exam room monitoring my eyelids and corners of mouth every 5 min.

Finally neuro came back in - repeated the observations (mostly eyelids and smile), then repeated the strength tests......and voila! I had a dx.

Only then did they order the blood work and the SFEMG - both of which showed nothing!

My neuro also said that someone without MG can not handle Mestinon (unless they have had a recent and serious exposure to insecticide or nerve gas).
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Old 09-21-2014, 11:08 PM #18
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I had eye twitches like that, until I started taking magnesium and b12.
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Old 09-22-2014, 03:48 AM #19
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I believe Magnesium is not good for MG.

Quote:
Although paralysis after magnesium administration has been described in patients with known myasthenia gravis, it has not previously been reported to be the initial or only manifestation of the disease. Patients who are unusually sensitive to the neuromuscular effects of magnesium should be suspected of having an underlying disorder of neuromuscular transmission.
From here.
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