Kennedys Disease Community
just wanna ask

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https://kennedysdisease.groupee.net/eve/forums/a/tpc/f/8581031121/m/8597096576

04-21-2015, 11:01 AM
danica02
just wanna ask
My dad was diagnosed of KDA. His doctor told us that he needs a hormonal therapy and high dosage of bcomolex every 3months. Is it true?
04-22-2015, 07:06 AM
Bruce
I have never heard of that. Is his doctor a neurologist? How was he diagnosed with Kennedy's Disease - DNA test? Check out the KDA website for additional information on the disease, pending clinical trials and previous trials.
04-22-2015, 08:22 AM
danica02
Yes! He is a neurologist! My dad undergo in a repetitive stimulation studies and electromyography. His doctor is requesting for a muscle biopsy. And he told us that may dad needs to go on a hormonal therapy as a remedy
04-22-2015, 10:06 AM
Bruce
There is a DNA test that will conclusively determine if your father has Kennedy's Disease. It is a simple blood draw and takes about 3-6 weeks for the analysis.

Currently there is no treatment or cure for KD. Some of us have experienced limited improvement or reduced degradation in strength with Avodart (Dutasteride).

Currently there are preliminary trials taking place using a new drug. There is hope that a full trial will begin late this year. Information about the trial cam be found on the NIH website. NIH Clinical Trial

This message has been edited. Last edited by: Bruce,
04-22-2015, 10:11 AM
danica02
Thanks bruce
04-27-2015, 07:36 PM
Bob Heitzman
I assume " bcomolex " is B-Complex

If so see other recent post on avoiding high does B6.

I can't see were a flood of B-anything would be all that useful as a treatment for KD - but then I'm not a doctor...

I've heard of high dose B for some things, but not for KD.

RE: B12 It is pretty common to be tested for B-12 on occasion and add a supplement to bring it up if low. My doc prescribe 1000mcg/week. I took 2 a week as the bottle was recommending one a day. My B-12 levels came up to the normal range.


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email:rheitzman at gmail
04-27-2015, 07:41 PM
Bob Heitzman
RE: repeated testing

I'd suggest you seek out another doc. Other than acting as a clue to get started on diagnoses I haven't heard of additional tests being needed. Ditto biopsy - not use for diagnoses as far as I know. It is being done in the study Bruce mentioned to see the impact on the cells from the drug. There is no biopsy needed for KD diagnoses.

As Bruce indicated the KD genetic test (one time) is all that is needed.

Of course we can have problems other than KD so I'm not saying no further test should be taken - I'm just suggesting you know why you are being tested (other than billing revenue.)


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email:rheitzman at gmail