Hi i'm another new member. My first cousin has just been diagnosed with Kennedy's disease. Which obviously in turn means i will have to get tested as my mother may be a carrier. My cousin had a definate diagnosis of Kennedy's so does that mean if it was passed on to me by my mother, it would definately be Kennedy's and not something else worse? When i found out about my cousin it took 3 months from finding out he was ill to the final diagnosis, in which time i suffered extreme anxiety, panic attacks and nearly had a breakdown. I have so many other questions but i'll leave it at this introduction for now. Also this forum has been an enormous help to me.
No worries. Even with Kennedy's, life is still good. Be glad of the concrete positive things in your life, rather than the possible negatives. Say hey to your cousin.
Thanks for the reply. You are right about the positives and i am sure after reading so many posts on here that life can still be very enjoyable with Kennedy's.
I think my worry at the moment is that i have had some symptoms, and if the Kennedy's test comes back negative, it may be something a lot worse. So bizarre as it sounds a positive Kennedy's diagnosis would actually be somewhat of a relief. At least i would know for sure and could just 'get on with it' I'm going to my GP tomorrow to see how i go about getting the test.
Matt, thanks for sharing your thoughts. If KD runs in your mother's family and you are experiencing some symptoms that could be related to KD, it is always good to be tested.
You GP can draw your blood and send it to a DNA lab for testing. It normally takes three weeks or so for the results.
If it is KD, and depending upon your age and severity of the symptoms, there are several options to consider, including:
- Joining the KDA. We are a family. Keep current on research and clinical trials. Join us in the Chat Room. It is an excellent resource to share and learn. And, continue to use this forum to ask questions.
- Joining the MDA. They offer some great programs and support for those of us living with the condition.
- Helping educate your GP and neurologist if they are unfamiliar with KD.
- Reviewing the Social Security - Disability Guide and Financial Planning Guide on the website. Information is knowledge.
- Consider beginning a 'smart' exercise program to keep the motor neurons firing and muscles healthy. Review the guide on the website and then discuss options with your doctors.
And, always remember, we are a family. We are here for each other. We look forward to hearing from you.
Thank you. yes i have noticed it is very tightly knit on the forum, everyone is eager to help as much as they can.
I will keep you updated on the progress.
So i went to see my GP today and she said she had never heard of Kennedy's but she was going to do some research. Regarding the test, there are no facilities on the small island that i live on that can do DNA testing so i'm going to find out from my cousin who lives on mainland U.K. what his specialists details are so my GP can get in touch with him and get the ball rolling.
Matt, you will find some helpful information on our website. Follow the link for the DNA Test information and print the information. ( DNA Test ). Give it to your doctor.
Also, on the same page there is a link that will take you to a list of DNA labs. Click on Europe and at the bottom of the page is United Kingdom. The UK has 26 labs shown. Good luck.
So the other day i realized one of my symptoms wasn't a symptom at all.I thought that when i 'scraped' the bottom of my foot it was supposed to make my toes curl down, they didn't and i immediately put it down as a symptom. I told my wife about it and she replied that hers didn't either and upon investigation that is a normal response.My knees reflexes are also fine.The only thing i can say now is a symptom is that around June or July last year i noticed that my lips fatigued quicker than normal blowing up a lilo. and did the same at a Christmas party when blowing up a balloon. I wouldn't say they have gotten any worse over the past 6 months but since i found out about my cousin my lips have started to fatigue quicker when eating, but i have been really stressed and anxious and i'm pretty worn out with it all and my body does feel weaker in general. I also had gynocamastia when i was younger and had surgery at about 38 to remove it, i have also had a fair bit of back pain recently but my job puts a lot of pressure on my back.
My point here is this,do you guys think that this is enough for me to warrant getting tested now? or maybe just make sure i keep myself healthy and get tested if i start getting more symptoms? I do suffer badly with health anxiety so if the test came back negative for Kennedy's i would probably think it was something else so is it better to go with the whole 'Ignorance is bliss' thing?
Advice greatly appreciated
Matt, everyone responds differently. One common comment I make is that "not everything is related to Kennedy's Disease." You and your doctor need to work through the issues you are experiencing. They most likely are related to something else; hopefully something minor.
I would also go through the common symptoms shown on the KDA website ( KD Symptoms ). Write down any symptoms that you have experienced including when it appeared, frequency and severity. Those of us living with KD have some, but not all of these symptoms. Then list any other symptoms you are experiencing (plus when appeared, frequency and severity). This will give you and your doctor something to work off of.
Ignorance is not always bliss - especially if there is a treatable health issue involved. :-)
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614