Location: Bristol UK
My DOB is 08/31/34 and I was eventually diagnosed, via the UK National Health Service, with Kennedy's Disease in Dec 2000, after a Senior Registrar Neurologist performed DNA related blood tests. Earlier, in 1980 his superior. a well respected UK consultant neurologist had described my problems as "familial tremors".
In 1995 after NHS referral by my GP -having lost knee,ankle and elbow reflexes - he conducted NCS/EMG studies, concluding I had a chronic form of Isaac's Disease - a non-progressive muscular afliction. Regretfully, in the NHS, all outcomes to "specialists" referrals are reported to one's general practioner (GP), with no copy letters sent directly to the patient. Until 2002 when I first viewed my GP file (cost £25- overseen by the GP Practice Manager) I discovered that non-genetic blood tests carried out in 1995 went unreported to my GP. In 2003, my enquiries to the Clinic drew a blank. Yesterday, after eight years, I re-visited that NHS Neurology Clinic (by appt taking 8 weeks wait) and discovered the blood tests results on my Clinic file - thanks to a helpful young lady registrar neurologist. Other values were normal but showed an elevated CK no of 700+. A similarly high value was reported to me via another GP in 2000, some months before confirmatory KD DNA related tests were available.
In 2001 An NHS clinical geneticist predicted a gradually worsening KD future. He had personally heard of just one other family in South Wales UK, being similarly aflicted and of course there was no known cure or relief available.
Fortunately my younger maternal great niece,being a post PhD Neurological Sciences, was concerned about wider family issues. She suggested I examine my clinical and GP records in 2002. which has now finally revealed the existence of the unreported blood tests of 1995! Subsequently, she and a maternal neice - (she has three sons, 30, 27 and 21 plus daughter 18), have each tested negative to DNA blood tests. An Australian maternal second female cousin (then 36) tested positive but for other reasons is unable to have children. My only child, female, now 45, an obligate carrier, declines any tests and is childless, living with a partner.
I was diagnosed with atypical prostate cancer in Oct 2007 after a self-funded colo-rectal sigmoid cancer was successfully removed by laparoscopic re-section. The biopsy showed a CONTAINED Duke Stage 1 malignant growth but prostate C metastases were found on 2 nodes of an upper rectal-adjacent lymph gland harvested by my surgeon. Since Jan 2008 I have been successfully treated by my Urologist with 11.25mg triptorelin hormone intra-muscular injections and now receive three monthly GP administered injections which continue to satisfactorily control my PSA and testerone levels.
However, my wife and I have noted an acceleration of my KD related legs' weakness and swallowing has also significantly worsened. My NHS neurological Registar thought the KD's worsening could be due to those hormone injections and advised against products' treatment that may increase testosterone production - as implied in possible KD trials/treatments for AR theraphy discussed in KDA e-Xpress Vol 4,Issue 2 Fall 2009. I handed her a copy as background.I've also agreed to participate next year in an NHS video, to be shown to the local neurological clinician community which hopefully will raise KD's profile. I intend to pass a DVD copy to my great neice who works on ADS and related matters at Queens Medical Centre Nottingham UK.
Finally, (whew) any thoughts over there re likely conflict of KD potential treatments and KD/prostate C suffers receiving hormone treatment therapy? Kind regards
PS my career as marketing vp for UK hi tech. specialty fluorine pharma/agro chem intermediates involved many trips to US and Asia Pacific firstname.lastname@example.org
Michael, thank you for your forum post. It was interesting and not atypical to many other KD stories.
Testosterone acts like a poison to those of us with KD. Our androgen receptors just cannot function correctly. In the late 90's, Ohio State University had a trial where testosterone injections were given to patients with KD. The results were negative (an acceleration in weakness and symptoms were seen in these patients). If I remember correctly, Dihydrotestosterone did not seem to be quite as bad as regular testosterone.
Recent trials in Japan and the U.S. have been for chemical sterilization or a prostrate drug (Dutasteride). Neither appeared to be harmful, but also did not appear to be helpful. We are hoping the next clinical trial (IGF-1 for muscles) will be positive. The testing of the mouse models were very positive.
Hello, everyone! It’s very nice to meet all of you. I’m 63 and am about to begin some prostate cancer treatments. The doxorubicin they’re prescribing me seems manageable price-wise. They’re telling me that I should also look into Viagra to go with the doxorubicin. My issue is that I’m not making a lot of money, right now, and I was wondering if anyone had any ideas as to how I can save some money. Unofficially, my Dr. suggesting looking into alternatives such as “generics” and gave me some reassurance that Canadian pharmacies might be a good option but I’m very nervous about getting into something I know nothing about and risking my health. Does anyone happen to have any insight about this, or has anyone ordered from any of these sources? Please let me know as soon as possible. Feel free to message me privately if you prefer that to posting publicly. Thank you so much for your time, support, and allowing me to join such a great group of people for my own education.
I had a couple of people send me some information and did some research on my own, which I’m currently reviewing. It seems like I might be able to save some money from one of these online places. I don’t have too many chances at this. I’ve narrowed it down to four places that I’m considering ordering from. My favorite one, so far, is a place in Canada that offers “trackable shipping”, allows me to order online with my credit card, and is offering me some free samples and a discount code for my first order. Just wanted to share my progress so far.
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Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614