[sfordham]

Hi all,
I was told last week that I likely have ocular MG - I declined the medication 'Pyridostigmine' until the blood work results are in 'Acetylcholine Receptor Antibody & MuSK Antibody'. Maybe I'm just in a state of denial - I have double vision at reading distance only for ~4 months and no other weakness that has been found to date. Can the blood test be relied on? Thanks to anyone who can provide info.

[pingpongman]

A lot of peoples first results are negative. Mine first was negative and I had double vision. Shortly after I was full blown generalized and am now positive for 4 anti-bodies. The mestinon won't hurt you. If you don't have MG it will make you a little sick. They gave this to most of our troops in Iraq.
Praying you have a smooth journey.
Mike
PS: You came to the right place

[AnnieB3]

Hi, sfordham. Who diagnosed you with ocular MG? A neurologist? A MG expert?

I hope you don't mind, Mike, but I'd like to clarify what you said about Mestinon.

Our troops got 30 mg. of Mestinon. It DID make them sick. And, in combination with a few other things they were given, some of them became very ill.

Mestinon won't hurt you if you have MG. However, a person with MG can still overdose on it! Finding the right dose can be tricky. Too much can make you worse and too little can, too! Some neuros start off with a lower dose and then increase it, to see how you react to the drug.

Most people do fine on Mestinon. I have no side effects or adverse reactions from it.

If you don't have MG, taking Mestinon can cause symptoms of an overdose of acetylcholine (the neurotransmitter that makes muscles strong). That would include increased muscle weakness, increased salivation, increased GI motility and, therefore, diarrhea, nausea, vomiting, abdominal cramps, sweating, etc. It can also cause increased bronchial secretions or make asthma worse.

In some people, Mestinon can cause asthma, though that's rare.

I completely understand the desire to have "proof" before starting a medication. I needed that, too.

Mestinon kicks in about a half an hour after you take it. Then two hours after that 30 minute point, it wears off. So if you do take it, at least you'll know that it wears off quickly! And you could always start with 15 mg. at first to see how you do.

Mestinon isn't great at helping with more than mild double vision or ptosis (drooping eyelids). It does help a lot with most muscle weakness, but MG is unpredictable and weakness fluctuates.

Is there anything else you'd like to know? People here are great at support and have a LOT to share!!!

BTW, that "denial" thing is normal. Who wants a disease? MG is manageable, but there's much to learn about it.

www.myasthenia.org
www.mdausa.org

There are some drugs that make MG worse. A lack of sleep, hot and cold weather, and a lot of other things can make it worse, such as infections, surgery, and stress.

Annie

[sfordham]

A neurologist at EMG clinic gave this diagnosis after testing me. I have not seen the detailed test report myself - but have 'Normal' on result of SFEMG; have 'no decrement' on result of repetitive nerve stimulation. I was hoping that the blood test would be definitive but read that is not the case. I have appointment in a few days with an Orthoptic Clinic. I guess I'm just wanting some other outcome. Female and 62.
Thanks

[sfordham]

Well the blood tests were negative, and the EMG testing was negative, so now the diagnosis of MG has been put aside. I am now on a wait and see (or not see in my case) basis for a few months

[AnnieB3]

Sometimes the blood tests are negative early on! When MG is basically ocular only, they might not show up until later on.

Have they thought of doing a Tensilon test? If you have obvious ptosis, that would be a very good thing to do!

Also, a trial of Mestinon is a good idea. So is seeing a neuro-ophthalmologist (N-O)!

Before you go and have a brain MRI to look for other causes, see a N-O.

Watch for any signs of weakness, and report those to your neuro if they occur.

I wish I could help more.

Annie