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Question about imbalance..... Urinary retention and bowel retention

Hi Jan

one of my daughters and I have recently been confirmed as having Myotonia Congenita and my daughter also has hyperkalaemic periodic paralysis. since Feb 2013 my daughter has had urinary retention and started having problems with her bowels.. which a few weeks ago have virtually stopped working ( the doctor recently said that sometime in the future she will probably have an operation to remove her bowels - are these known symptoms of Myotonia Congenita or Hyperkalaemic periodic paralysis?? When my daughter was 9years old she also had problems with Chronic Fatigue Syndrome and Arthritis for a number of years and still now she can get excessively tired at times... but she has learnt to manage it ....

Over the past two years one of my sons has had problems with imbalance ((from the minute he stands up he feels like he's falling over, touches walls, furniture (anything) as he walks or he would fall - when standing still he's swaying all the time and can't stand still long or would fall!! ))which results in him having lack of concentration... when he concentrates on e.g. reading, for a few minutes he gets headaches which get worse and cause him to feel ill and sick. his imbalance is currently being helped with taking Cinarazine. for the first year the problems would last between 1 and 3 weeks every couple of months but he has had them continually since October 2013. He had the genetic blood test on Tuesday, to see if he too has MC, and so have to wait 2 months for the results....
Now, I would like to ask, is the imbalance a known symptom of Myotonia Congenita because our consultant said he hasn't seen / heard of any cases that he has dealt with / read about that includes this symptom; although he's not ruling it out because it's an extremely rare condition and he hasn't seen many cases. Having read Rolma's thread where she mention's weariness and imbalance, I thought you may be able to help. since October 2013 my son is also sleeping for 16+ hours a day and this is impacting on his ability to do anything... he is so tired all the time..

PS my daughter and I have appointments in London on Tuesday so may find out a bit more....

I look forward to your response.

Type of Myotonia: Myotonia congenita

Country: UK

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