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teynhambees
9th March 2012, 16:02
Well its been confirmed today my consultant, a very nice chap, phoned me to tell me that my genetic blood test for Kennedy's disease was confirmed.
At least I know what i'm dealing with and can at least let my brothers and sisters know along with other members of my family know what is wrong with me and to some extent guide them through what is to come for some of them. I am positive that at least one has Kennedy's he's (38) and suspect two (33) also have it. I know that there are others with Kennedy's on here and thankful for their help/support and although my consultant thinks it best I look at the KDA site, nothing against americans I think i'm better of here as the people are really nice and good have a great sense of humor amongst all this so i'm staying :)
Scott

pete
9th March 2012, 16:15
Well its been confirmed today my consultant, a very nice chap, phoned me to tell me that my genetic blood test for Kennedy's disease was confirmed.
At least I know what i'm dealing with and can at least let my brothers and sisters know along with other members of my family know what is wrong with me and to some extent guide them through what is to come for some of them. I am positive that at least one has Kennedy's he's (38) and suspect two (33) also have it. I know that there are others with Kennedy's on here and thankful for their help/support and although my consultant thinks it best I look at the KDA site, nothing against americans I think i'm better of here as the people are really nice and good have a great sense of humor amongst all this so i'm staying :)
Scott

Hi Scott,

Well i hesitate to say great news but in the bigger picture its better than ALS, so I hope it is as they say a long duration but without the terminal aspect , You did suspect this so i am so glad it didnt turn out to be the other for you , And also glad to see your not deserting us ,but i can say The KDA site is very good and a lot of people on there are really nice , I have spent hours chatting to people in the states and despite what the diagnosis is here ,it still makes me wonder how many get the wrong diagnosis and live with that . I reccomend you take a look if you already havn't , but agree these guys on here take some beating .

pete

angnmick
9th March 2012, 17:55
Hi Scott

As Pete says "Great News" in a fashion I suppose. Pity it wasn't something that they could fix,but we are all ever hopeful for the miracle cure just around the corner. I agree with you about this site they are brill on here, and have a great attitude about everything. xx Ang

teynhambees
10th March 2012, 11:19
Pete and Ang,

Thank you both yes it is good news in a lot of ways but still coming to terms with a dx even Kennedy's is still quite a shock even though deep down I knew it would be. I will take a look at the KDA site but I think it'll take some beating with you guys!

Pete - I am thankful for having a dx, my consultant did say that he would have d/x as MND undetermined type, rather helpful! It would seem that so many are un-dx here I cannot imagine waiting for years it was bad enough waiting a couple of months if that. My suspicions were correct when my grandfather was mis-dx as it was probably undiscovered or relatively new to the medical profession, hence the MND dx and his brother. Im sure that you are right Pete how many others even today get the wrong dx. I am starting my rather large family tree, it is large, I am one of seven children, some now have children and some are expecting their first child with numerous cousins and not even going backwards! LOL be interesting to see if others passed away with this.

They say the Brits have the dunkirk fighting spirit and I think it's true! I will help raise as much as I can in the hope that it will go in some small way help even if it doesn't find that "miracle" cure as I hope to be around for many years to come in some way or another, after all I am to be my brothers mirror image.

Scott

pete
10th March 2012, 11:49
Hi Scott,

I am really pleased for you ,this might sound odd but having the choice I so wanted it to KD for me , All my symptoms fitted the norm if thats possible , and so to get the MN diagnosis, shocked more than suprised us , but oh well at least its known now and you just carry on as best as you can ,

As for the family tree , good luck with that even more with you being a big family ,It took ages for me to go back to my Great grandads crew who all came from London area, pretty much dead end after that , Also I have the good fortune to have a really great GP, who over the twenty odd years i have known him , even to the point we sit outside having a smoke of our pipes , he related to the fact , it was not generally given what they knew a long time back ,that people where not told the diagnosis of MN because it was thought to be to detrimental to the health of that person , with the internet now i suppose all who suspect it ,already have a pretty good insight to what is to come , I still am not to sure if it wasnt better not knowing for some , not everyone is capable of dealing with the news without it affecting them and only adding distress knowing what is to come ,So my point is maybe it will not be that easy to see on the certificates that MN was the cause , wish you luck with it anyway , and best wishes to Ged ,

Regards
pete

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