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Originally a Mancunian, but now living in the Forest of Dean with my Husband and Daughter. I'm 41 years. My right eye started to close involuntarily in January this year (2009). The weakness progressed down my face and started to affect my mouth by February, I also noticed weakness in my left hand. My GP suspected MG and referred me to neurology. Attended Neurology in March, examined by 2 Neurologists and told they suspected MG. I was told tests aren't always positive so started on mestinon 60mg x 3 daily. Swallowing also started to become more of an issue in March and noticed a more generalised weakness. In May I returned to Neurology, but saw a different consultant AcHR test <0.2, thymus scan results not clear!! Then told Hemifacial spasm suspected (bear in mind this is while on mestinon, so symptoms much less than normal), I was advised to stop Mestinon, Brain MRI & ECG ordered. I stopped Mestinon but after 4 days my symptoms were unbearable (eyes & mouth severe, swallowing, general & speech suddenly became a problem - lisping & like I'd just been to the dentist!) so I went to A&E. The Doctor there was excellent and spoke to my GP. I was advised to start Mestinon again, GP wrote to Hospital (& so did I) & also still believes I have MG. I now have quite bad voice & swallowing sympoms in addition to a generalised weakness, either if I do too much, or once mestinon is wearing off/before taking. I'm now going back to see the Neuro as a result of my letter (& before the new tests are carried out). If this is MG then I feel it has probably been aggrevated by 2 major operations I had last year, a total hip replacement and osteotomy of the femur. The leg was deformed and arthritic due to a childhood disorder. My reaction to anaesthetic & morphine was really bad, also my right eyelid first drooped around 5 years ago - but nothing more than that and the odd bad day of general weakness ever happened, so I was never prompted to look into things further. Update 4/10/09
I saw a Myasthenia Consultant at Oxford, a very nice man. He doesn't think I have MG based upon the EMG results, I'm not sure yet whether that's good or bad news. He recognises there is something going on that is neuromuscular and that there is a problem with the facial muscles (obviously evident by examination). He did say that from onset my symptoms do tie in with hemifacial spasm, but recognises this doesn't fit with other things happening, ie voice change, trouble swallowing, vision problems etc.. He did say these could be caused by taking mestinon, I have stopped mestinon now and will see if there is any improvement, none yet, although no great worsening either(which I suppose is good) ............. The normal course for me is that my symptoms seem to fluctuate on a day to day basis, so I think a few weeks will give me a good idea of how things are going. He is sending for test results and notes from my previous neurologist to make sure nothing has been missed. He is copying me in to any correspondence and then (I'm hoping), doing some further tests. Update Nov 09 Oxford wrote to my previous neuro asking for scan etc and recommending a scan of the head with definition. Oxford will see me again depending on progress. My previous Neuro says I have to go back to gp for re-referral despite letter from Oxford!! Whatever happened to the duty of care? Past 5 weeks - no change in facial, swallowing or vision symptoms, now getting tingling & numbness feelings in feet, face, hands & legs. Some twitching in legs too, although this has settled somewhat.
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