MGA News April 1999

Until I married my wife 13 months ago I knew absolutely nothing about Myasthenia Gravis. My wife and her family had explained to me when I met her that some 20 years ago she had suffered an illness called Myasthenia Gravis but after undergoing Plasmapheresis treatment and a Thymectomy, the condition had gone into remission and since the age of 16 she had not suffered any symptoms.

About 8 months ago my wife started to complain of weakness in her arms, legs and facial muscles and that she thought the Myasthenia Gravis was coming back. We immediately made an appointment with our GP who openly admitted he knew nothing about this disease but wrote and made an urgent appointment for her to see a Neurological Consultant at our local hospital.

When we saw the Consultant, who I must state at this point was a young Consultant, he told us that as my wife had had a Thymectomy then it was, in his opinion, not possible for the disease to come out of remission and that these symptoms must be something else. He told us that he would carry out routine blood tests and would book a routine Electromyographic Test of nerve to muscle transmission just to put our minds at rest. Once the letter arrived back at the GPs surgery, the diagnosis from the Consultant was an under active thyroid gland and my wife was immediately placed on a course of Thyroxine.

We were still not happy with this diagnosis as even having taken the Thyroxine as prescribed, the symptoms were still persistent and starting to get progressively worse, so back to the GP we went and this time after a lot of discussion with the MGA we insisted on an Acetylcholine Receptor Anti Body Blood Test being carried out.

The results of these tests came back positive, stating that this blood test confirmed the previous diagnosis of Myasthenia Gravis. At this point we found out that the Consultant had previously carried out this test with the same results but had obviously chosen to follow his opinion that this disease cannot come out of remission and that the Thymectomy was in fact a cure for Myasthenia Gravis.

The reason that I write this letter is hopefully to provide comfort for any sufferers undergoing the same problem with being re diagnosed after remission. Be persistent and there is light at the end of the tunnel along with a friendly voice at the end of the phone with the MGA helpline to whom we will always be eternally grateful.

MGA NEWS April 1999

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