[limpbiscuit]

Hi All,

New to the forum and glad I found it. Thought I would introduce myself. I've already found some very useful and encouraging information. Been recently told by two doctors that I most likely have MG, now the wait until I meet with a specialist for diagnostic testing. One trip to the ER and a lengthy stay in the hospital was enough for me.

I think the thing that has surprised me the most is how variable the symptoms can be. One day I can barely get out of a chair and find breathing a challenge; a week later I am moving around fairly well and mostly functional.

Best wishes to everyone else who is in the early stages of trying to find out what is going on, and a hearty thanks to the veterans who are helping us sort out the path.

-Willie

[joefnh]

Hi Willie and welcome to the group. I'm sorry you may be diagnosed with MG, but now you can know what your dealing with and get the proper treatment. I am recently diagnosed as well and just coming to grips with what MG means and how to deal with it day to day.

What were you hospitalized for?

Joe

[limpbiscuit]

Joe,

Thanks for the welcome and the encouragement.

I was hospitalized after I passed out and then in the hospital I developed hemiparesis on my left side. Took many days for that to resolve. Doctors of course were concerned that it might be a stroke and ran all the relevant scans. Fortunately scans came back clean.

Young neurologist decided I must have conversion syndrome (i.e. the brain converting psychological stress into physical manifestations) and asked if I would do a psych consult. I was happy to and after a nice chat with the psychiatrist he wrote in the chart that there was no way it was conversion. So what did the neurologist do, well of course he diagnosed me with conversion. Oh well. Fortunately after the hospitalization I followed up with more experienced physicians who have gotten past new doctor syndrome (i.e. I attended med school and now I know everything) and they are getting me on the right path to health.

I guess hemiparesis is a very rare symptom for MG, but there are some documented cases in which the disease first presented this way. Usually ocular aspects show up in connection with this, which is exactly what has happened to me. Then it progresses to more generalized MG symptoms, which is also happening to me.

-Willie

[joefnh]

Willie that's awful....I love the 'syndrome' with doctors, that when they don't know what it is, it must be the patients 'fault'.....meaning psychological in nature. I have run across countless stories on the web from people suffering from MG and could not get a diagnosis until they got past the 'it must be psychogenic' in nature.

If you read a couple of these short stories in this page you will see how bad if can get with doctors at times. Glenda's story is a real eye opener (top of page)

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

For me a little over a year ago I had some mild weakness in my legs and then last December I started having voice and swallowing problems and just after that I noticed the double vision. In late April the generalized symptoms came on hard and fast, I was very weak and started having breathing problems. I was diagnosed in a couple of weeks.

Since then, the Mestinon works well and I had my first 5 day treatment with IVIG in early June. It worked well, but I had a bad reaction and ended up having blood transfusions. I'm still feeling the positive effects of the IVIG, but I do notice them slowly wearing off. I'm going to talk to my neurologist during my next appt in August about a thymectomy.

I hope you can now get the treatments you need Willie

Take care

Joe

[cait24]

Welcome to the group. My MG is much more severe on the right side. MGers dominant side tend to be more severely affected.

Have you had any antibody test yet or a single fiber EMG? Have you tried Mestinon yet? Be very careful with the summer heat. Most MGers are severely affected by the heat. MG is very unpredictable even when you do all the right things. Are you going to the Cleveland Clinic?

Good luck,
kathie

[Mastas]

I was diagnosed in Jan and have good and bad days like you are saying. My advice.... GET THE BEST DOCTOR you can find! Research them and drive to a good one if you have to. I live in a big city, but still elect to drive 2 1/2 hours to one that is well versed in MG...

[Fortunatos]

Originally Posted by limpbiscuit

Joe,
I was happy to and after a nice chat with the psychiatrist he wrote in the chart that there was no way it was conversion.
-Willie

Willie, Hello and welcome...and three cheers for you! I've mentioned a number of times how important it can be to see a psychiatrist (doctor of medicine) when a physician suggests it. In your case, at the very least, you know you have mental health on your side, and this is one major step towards a diagnosis. Good on ya, as they say way-y-y-y in Eastern Canada!

[limpbiscuit]

Originally Posted by cait24

Welcome to the group. My MG is much more severe on the right side. MGers dominant side tend to be more severely affected.

Have you had any antibody test yet or a single fiber EMG? Have you tried Mestinon yet? Be very careful with the summer heat. Most MGers are severely affected by the heat. MG is very unpredictable even when you do all the right things. Are you going to the Cleveland Clinic?

Good luck,
kathie

I haven't tried mestinon yet, waiting for a neuro-optho appointment in August to get the ball rolling on proper testing. Turns out Ohio State University has a MG specialty group, they are running several clinical trials, so I figure that is the place to start.

I've been surprised at how differently heat is affecting me this summer. Usually it doesn't bother me, but I notice a huge change between last week when it was hot and this week when it is much cooler.