A very big thank you to everyone who responded to my article in the Summer 2006 edition of MGA News, I seem to have ĎStruck a Chordí. Here are extracts from 5 of them, with personal details removed to protect the innocent; I have also had to edit them to fit the space available for the MGA News.
1. Hello I am aged 57 and have had M.G. for 9 years. After reading Life with Gravis, bingo I have the same problem as you!! I am always telling my hubby not to shout, I can hear next doorís T.V. and I canít stand a clock that ticks, I have a constant whistling and hissing in my ears, so now I assume I suffer with this Hyperacusis, so what can be done to help us ?? Anything or do we just have to live with this, or is it a spin-off from our M.G. or a silent symptom, which we could forget to mention.
2. After reading the MGA magazine today, my husband wants to say that he has had the same symptoms as you describe. While working in a factory he was in a crowd but unable to understand what people were saying to him although he is not deaf. This was before he was diagnosed with MG. During this time he also had tinnitus. We thought this had come after flying on a plane with a cold. My husband had a very quick onset with MG. He finished working one Friday night with a cold and on Sunday had double vision. By mid-week he had seen an eye doctor in the casualty department at a local hospital who mentioned MG. But by Sunday (one week) he could not speak or eat. On the Monday he was admitted to hospital awaiting a neurologist to confirm. This was done mid-week. From then on he was on medication. Within 10 weeks he had a thymectomy which was malignant, so after radiotherapy things have improved a lot.
3. The reason for my e-mail is firstly to say that I also have hyperacusis (why are so many medical conditions given tongue twisting names?) and to a lesser extent tinnitus. I showed your article to my wife but she still believes that my difficulty in hearing her is just an act of defiance. I am partially deaf having worked for many years in the compressed air industry. I first contracted MG in 1997 (diagnosed in 1999). I then spent some 3 months in hospital. For some 4 years I was on high doses of medication and have had IVIG. For the past three years I have increasingly been troubled by hyperacusis. At first it was only really a problem for a few hours on my down days; but for the past year I seem to have a problem most of the time, even though my MG is generally less severe. I am going to have hearing aids fitted. Hopefully these will enhance the hearing in the ranges that are most affected.
4. Hello Mr ĎMissing Grabitsí. I was interested in your latest piece in MGA News. I am a 55-year-old overweight female who has had MG since early childhood. About 4 years ago we discovered my younger sister also has the condition, so it is now considered (after investigation by Professor Newsom-Davisí team) we have the congenital form of the disorder. My symptoms affect most of my voluntary muscles except the biceps and, surprisingly, the eyes. Iím a fairly jolly sort who likes to laugh in the face of adversity - sometimes rather desperately! However - I now recognise the symptoms of hyperacusis which you so helpfully describe in your article. Although I can Ďhear a pin drop 200 metres away through triple-glazing,í I have always had trouble discerning speech where there is background noise. I can never make out what people are saying to me at a party, what people are singing (e.g., in a concert), or chanting (at a football match), or if they do not move their lips much when speaking. Also, especially in my younger days, I seem to be overly sensitive to loud noises - gunfire, screeching tyres or shouting presenters on TV, etc, despite having an overly loud voice myself! Noises from outside the home seem especially intrusive, although the irritation has diminished over the years, and thankfully the sound of children shouting has never bothered me. Strangely, my husbandís stentorian snoring has never been a problem either - I tell myself Iím just glad heís there. Until reading your article, I assumed I was a rather neurotic bod, and put it down to general lack of tolerance on my part; I never considered that it was part of the MG package, and havenít let it spoil my life - I just tend to listen to Radio 4 rather than watch noisy TV. Thanks ever so for raising awareness of this aspect - I feel a bit less of a crank now.
5. I was discussing this condition with my neurologist a few months ago and was delighted to see your reference to it. I, for my sins, am the coordinator of the local MG support group and on making a few enquiries I found at least 3 of us with this problem! My husband is hard of hearing so there is often a difference of opinion over the TV control!.
Now Gravisí two penníorth and an answer to some of the general points. First of all, please remember that although I run my pieces by the experts, I am not a doctor. My understanding is that if your MG is under good control, as with all myasthenic symptoms, hyperacusis should not be a problem. One of my pet boffins agrees that good control of the MG ought to help, and suspects that Neurologists arenít much aware of the problem either Ė they may not go looking for trouble.
You will be more aware of it when you are tired or your MG is worse. MG is not the only cause of hyperacusis. As with all medical problems, if it is bothering you, talk to your GP or Consultant. The responses I have had would indicate that patients rarely connect their hearing problems with MG and so donít mention it to their doctor. Perhaps more of us should do so, but please donít quote me as an authority or Mrs Gravis will have my guts for garters.
I would still like to hear from anyone else with the problem. Please write to me at MGA HQ, or e-mail me at firstname.lastname@example.org.
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