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Old 07-27-2010, 09:26 AM   #1
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jsciusco HB User
superior oblique myokymia-- can *anyone* relate??

My husband has sufffered with the symptoms for over two years without getting any diagnosis -finally a neuro ophthalmologist has diagnosed him this . it seems to be very rare- I can't find much on it but woudl be so happy to speak with someone else who has had to deal wit it in their family.

Joyce

 
Old 07-19-2011, 08:48 AM   #2
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sjoakes HB User
Re: superior oblique myokymia-- can *anyone* relate??

Hi Joyce,

Ive been diagnosed with SOM after 7 years of symptoms, being fobbed off by Drs who hadnt got a clue, made me feel like i was making the whole thing up, then finally at the end of last year I saw a young GP who was interested and ordered all blood tests to rule other problems out, referred me to the local eye infirmary, who in turn sent me to a neurologist, and finally got a diagnosis!

It is a very rare condition and ive struggled to find any fellow sufferers in the UK although I have found a US based forum site, which is good but doesnt really help with any UK based queries such as the DVLA.

Ive been offered epilepsy drugs but feel my symptoms are 'bad enough' to warrant the side effects they can cause, I have disclosed the condition to the DVLA and have filled out and sent back their medical questionnaires so I just waiting to hear now whether they will allow me to continue to drive or whether they will place any restrictions.

So your husband is not alone..............If i can be of any help let me know

Sam

 
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diplopia, double vision, eye, neurological



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