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Discussion Topic  RE: Preimplantation Genetic Diagnosis (PGD) (in Open Topic) by ToddAllen
Henry, If you use facebook the "Kennedy's Disease Patient group" ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: EMG for KD (in Open Topic) by ToddAllen
Here's a new paper finding a serum myoglobin test may be a good way to diagnose between KD and ALS: ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: EMG for KD (in Open Topic) by ToddAllen
There are roughly a couple dozen named varieties of ALS. Some named for the cause such as a genetic......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: EMG for KD (in Open Topic) by ToddAllen
Yes, there are patterns to EMGs that are suggestive of KD. But the definitive test is the genetic t......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Husband has pain in his heels (in Open Topic) by ToddAllen
Hi Marsia, welcome to the KD forums. They have fairly low traffic lately so if you don't get the an......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: A few questions (in Open Topic) by ToddAllen
Yes, ALS has been the most common misdiagnosis for those with KD. A couple dozen different causes h......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Arginine as potential disease-modifying drug (in Discussion of Papers) by ToddAllen
Arginine is also present in food. Amino acids are the building blocks of proteins and higher protei......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: Coping (in Open Topic) by ToddAllen
Hi Nick, welcome to the club! I second all of Dan's great suggestions. I'd add that KD has highly ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Developing an antisense therapy approach for Kennedy’s disease (in Open Topic) by ToddAllen
Hi Jin, welcome to the forums. I consider the work on ASOs for KD potentially good news. There hav......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Jaw locking (in Open Topic) by ToddAllen
I have a problem where my jaw catches when opening. I had an MRI and it showed cartilage that had s......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Researchers discover how cells clear misfolded proteins from tissues (in Discussion of Papers) by ToddAllen
I doubt it. It is about the process of clearing misfolded proteins that are outside of cells by bri......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Discussion of Papers

Discussion Topic  RE: facial muscle weakness (in Open Topic) by ToddAllen
I have weakness of the lips, tongue and jaw although it isn't too bad except when sick or deeply fat......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Fasting and autophagy (in Open Topic) by ToddAllen
Sorry for the hijack Dan, but thanks Ben. I appreciate your objections to FB and feel somewhat awkw......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Fasting and autophagy (in Open Topic) by ToddAllen
Great posts Dan! For those who don't know here's the Facebook group Dan referenced: Kennedy's Disea......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: New on board (in Open Topic) by ToddAllen
......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: New on board (in Open Topic) by ToddAllen
Hi Hunor, yes your symptoms sound a lot like what I had at your age. Have you had the genetic test ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: laryngospasm (dry Drowning) Choking (in Open Topic) by ToddAllen
My experience matches well with the comments and advice given. The common laryngospasm triggered by......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: CRISPR improving all the time. (in Open Topic) by ToddAllen
Dan, my apologies my memory isn't what it once was and I don't remember exactly what I read that lea......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: CRISPR improving all the time. (in Open Topic) by ToddAllen
I think professor Matthew Wood at Oxford has a student project using CRISPR for KD....
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Feeding tube (in Open Topic) by ToddAllen
My neurologist started asking me if I'd consider a tracheotomy or a feeding tube about 10 years ago.......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic


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Kennedy's Disease Association
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