Sunday, November 11, 2012

Myasthenia Gravis: Never heard of it!

The problem with identifying MG is that it has multiple symptoms that may come and go over a long period of time. Each symptom, by itself, is more commonly associated with other ailments other than Myasthenia Gravis. It's simply tough to connect the dots; to associate one complaint with an entirely different one, possibly months later. It's so rare that many doctors may never see a single case of the disease in their entire careers. The following post illustrates the frustrating experience of somebody seeing their friend suffer with Myasthenia Gravis for years before finally being diagnosed.

Posted by Steven Mills: Well, it is not a newly identified disorder but for SOME reason, my friend has been diagnosed and treated as having Parkinson's for almost 20 years and guess what, it was not Parkinson's!

Over the years he has been to doctors here in Tennessee, Florida and New York but only recently has someone tested for this Myasthenia Gravis.
A New York doctor told him it was NOT Parkinson's, but never went further. Instead he told him he would just have to live with it.

During the past year plus he has been hospitalized, treated for asthma and on oxygen 24-7 but no one tested for Myasthenia gravis. Why? We don't know but it is not a new condition.

Maybe since it is normally found in women or men over 60, but when they found out what it was not, someone should have considered searching more since the symptoms described are an exact description of what my friend was experiencing.

Previous treatment did nothing and by going so long without proper treatment, the condition has taken a toll that can not be reversed. It is not curable, but it is controllable to some degree.

He called yesterday and after only 4 days on the new medicine, and dropping all the other stuff thrown at him, I could tell immediately that he was feeling better. While his voice was still weak, it had life back in it and he was talking of the future, not death.

If your doctor can not find the reason for you feeling bad, don't just sit there and take it! Take charge and control of you life and push back. If they say "just live with it" or you are imagining it, it is time to change doctors.

Just my opinion.

Source:  Steven Mills Comment at Shelby Times Gazette 

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