August 21, 2020 at 12:59 pm #189174Reply To: Hi
Hello and welcome to the forum Huw. It will indeed be a worrying time for you. I went through it myself with my number 2 son. In the first instance I would urge you to read this
and then perhaps you may have more specific questions. I hope that you will find in there some reasons that can give you lots of hope for your son. My own, who has FHSD, has gone on to be very successful, and owns his own house and business, whilst still in his thirties.
Please do feel free to come back and ask any question at all, rant, rave, comment. We are here to try and help.
So many love songs, so little love.August 21, 2020 at 3:37 pm #189178Reply To: Hi
Thanks for your reply just all over the place at the minute we saw a doctor yesterday but he had limited knowledge but the doctor who specialised in muscle issues at derby has retired and has not been replaced yet so not sure how long it will be before they get a replacement may try to get to another hospital to ask some questions and get help thanks againAugust 23, 2020 at 11:49 am #189182Reply To: Hi
It is not unusual for GPs to have no knowledge of MD and its variants, as they are all relatively rare. There are other specialist neuro docs about so it might be worth investigating whether or not you can be referred to Nottingham for example. But, as I am sure many have found, the virus is restricting many appointments and tests, so that may well also take some time.
So many love songs, so little love.August 24, 2020 at 7:54 am #189184Reply To: Hi
Good morning, sorry to read about your son Marcus .
I got my diagnosis earlier this year and not had a face to face with my consultant, just several conversations over the telephone- and it’s not the same … i always think of something else I should of ask !!
I’m under the Nottingham neuro team, but also waiting to visit Coventry when things get better with this virus.
All the best Tracy 😊Tracyallcock7ParticipantPosts: 0Joined: 06/01/2020August 25, 2020 at 6:36 am #189189Reply To: Hi
Thank you I am trying to get our gp to refer us to Nottingham , Marcus has an older brother who is 13 has some leg pains but not like the cramps that Marcus has more like knee pains need to get him tested as well but not herd anything but it’s early days I guess will chase gp on that as well wondered what the likelihood is of a sibling having md as well ?August 25, 2020 at 12:47 pm #189200Reply To: Hi
Personally I would try and get the siblings tested as well. It is vital for their future , in my opinion, for them to know what is going on with their body. I have had all of my five children tested, so that now they can go on with their lives knowing that only one has FHSD. he in turn has decided not to have children. I would have wished to have my father tested as he was showing all the signs, and my brother too, who is beginning to show the signs, but both of their GPs told them that they could not possibly have this very rare condition and therefore it would be a waste testing them!
Sadly, tests for children may well be delayed, but keep fighting for them!
So many love songs, so little love.August 25, 2020 at 5:40 pm #189220Reply To: Hi
As Mike says its a good idea to get siblings tested if you can so they can make informed choices later in life.
Inheritance can often depend on type and if carried in male or female line. then there’s carrier status and spontaneous mutations. that means that the condition is a fluke in the affected person. In the 80s my condition was perceived to be just peculiar to me. But now 30 years on a sibling and 2 older relatives are showing very mild issues which would maybe indicate that them themselves are maybe carriers.
"""""""What doesn't kill you makes you stronger""""""CatModeratorPosts: 1,002Joined: 20/09/2010
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