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Recommended Book
Registered: 07-25-2016
Posts: 11
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Greetings. I am a recently diagnosed carrier with symptoms (you can see my recent posts under "women carriers"), and my physical therapist recommended a book written by a medical doctor who suffered from severe MS. She researched nutrition as a way of helping her and the results were apparently remarkable. I have ordered the book but haven't read it yet. "The Wahls Protocol" by Terry Wahls. Well described on Amazon. Perhaps worth a try!
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Location: Chicago, IL
Registered: 01-18-2008
Posts: 202
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Hi Linda, welcome to the KDA forums and thanks for posting this. Because of your post I am reading "The Wahls Protocol" and it appears I have stumbled upon a similar diet for somewhat different reasons. And like the author, Terry Wahls, with a very different disease, I've gone from barely walking to 20+ mile bicycle rides in just a few months. I've been posting about my experience in this thread
After decades of uninterrupted decline I'm making rapid gains

I've been making other changes in addition to diet and I don't know to what degree the dietary changes are responsible for my success so far, but my "gut" feeling is the diet changes are fundamental. A recent study with mice genetically altered to have a severe version of the Kennedy's disease gene found that switching these mice from a standard diet where carbohydrates were the primary source of calories to a high fat diet (45% of calories) both improved their function and DOUBLED their lifespan. Glycolytic-to-oxidative fiber-type switch and mTOR signaling activation are early-onset features of SBMA muscle modified by high-fat diet

The study didn't go into details on the diet and I'm assuming it wasn't particularly high quality as the normal control mice put on the same high fat diet did worse developing insulin resistance and related problems. There are huge differences between caged mice genetically engineered for disease and free living people, but still this seems a strong indicator that diet plays a big role and ought to provide those of us with this disease an incentive to at least experiment with cutting back on the empty calories of refined carbohydrates such as sugar in processed foods and white bread.

As for yourself, if you are developing significant clinical symptoms of SBMA/Kennedy's disease, I highly recommend you have your testosterone level checked out. It's well established that a primary reason why females are much less affected than males is their testosterone level is typically about 10% of males. Some men with SBMA benefit from testosterone reducing therapy although there are significant side effects and it isn't an officially endorsed method of treating SBMA in men. However, if as a women you were found to have an abnormally elevated level of testosterone, to have that treated and brought into the normal range should have a much better reward to risk ratio and be readily endorsed by your health care providers.

My mother, now deceased (stroke+cancer), was profoundly affected by SBMA. She had PCOS and other indicators of elevated testosterone, a typical American diet and other bad habits such as smoking. I wish I knew what I know now 30 years ago, although my mother was stubborn so I'm not sure how much impact more knowledge might have had.

It sounds like you are looking for answers and I'm hopeful you find a combination that works for you. Please continue sharing your journey as it may help others in similar circumstances.
Location: San Luis Obispo CA
Registered: 10-10-2005
Posts: 163
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Include DHT in your blood testing. Some of us experienced some recovery of function by taking Avodart which reduces DHT.

email:rheitzman at gmail
Registered: 01-08-2013
Posts: 61
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Hi Linda, just catching up and saw your post. Here are some foods from the Charcot-marie=toothe people. I have leearned alot over the last couple of years by focusing on what I feel my body is telling me, eating a balance of ancestral foods when highly active Sauerkraut, pickles and cured meats, yumm) and turning to the advice of others managing neuro muscular disorders
Registered: 07-25-2016
Posts: 11
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Hi all. Thanks for your suggestions and information - I'm just catching up. I will see a neurologist who specializes in MS at the end of the month, we'll see what he says. Testing my testosterone level is a good idea but I don't seem to have symptoms of a high level, like PCOS. My symptoms and fatigue are variable with days when I'm feeling quite fine and others when not. One day when I felt particularly bad recently was after a dinner of shrimp the night before, which I hadn't eaten in ages. Wonder if there was a relationship? My female cousin of the same age seems to share my degree of symptoms - her brother and 2 sons are both positive.
Registered: 01-08-2013
Posts: 61
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finding triggers is a helpful exercise. Shrimp is one of the foods that are more slowly digested, so discomfort, fatigue and aches and pains can have more to do with the combination of foods eaten than just the shrimp alone. Ruling out an allergy, some people lack the enzyme needed to digest some shelled sea foods, and are not allergic, but intolerant, (like people who lact the lactase needed to digest milk) Not everything is Kennedyès disease, but by keeping track of your symptoms and finding triggers, you will learn what can be managed and what needs to be avoided.
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Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614
Tel: 1-855-532-7762
Email: info@kennedysdisease.org