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Charcot-Marie-Tooth UK

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Miata43 profile image
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Hello. I am an active senior & longevity enthusiast who enjoys, golfing, dancing & volunteer work. I also have Essential/Familial Tremors in my head & cholesterol challenges. My tremors are controlled by taking 2 pouches of Immunocal per day, as well as one B12 shot every 30 days. Immunocal keeps my cholesterol in check & is the foundation because not only is it very easily digested, it also contains profound immune-optimizing components that are foundational building blocks for the treatment of autoimmune diseases. Staying healthy by educating myself is my passion. I live in British Columbia, Canada.

I hope my information may help someone else.

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Miata43
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John1945 profile image
John1945

Hello to Miata43 .....

Your recent post on the Health Unlocked UK website is welcomed, and it is nice to see that the "Health Unlocked" website is being viewed outside of the United Kingdom (UK): This site is where all of the UK's Cmt sufferers, (30,000 circa ?), come to "share" their own medical personal Cmt symptoms, and experience's, with their fellow UK Cmt sufferers:

Charcot-Marie-Tooth (Cmt) disease, is an "inherited", ie [passed-from-parent-to-offsprings], and is a also very slow, and progressively worsening Neurological-disease, with no known cure at present:

You cannot [catch-it], it is not fatal, however, it will never/not get any better, and it will most ever so slowly, and progressively get worse ! ! !

Our UK Neurologists + "Health Professionals, prefer to call it......

>Heriditary ? >[passed from a parent to an off-spring]:

>Motor ? >[command nerves, brain to muscle group(s)]:

>Sensory ? >[touch/feel nerves, sends info back to brain]:

>Neuropathy >[any diseased condition of the nervous system]:

Essential Familial Tremor, is a disorder of the "Central" Nervous System [contained & protected within the brain, and spinal cord], that causes involuntary, rhythmic shaking [tremor], especially in the hands: It also involves tremor without any other signs or symptoms, and is distinguished from tremor that results from Cmt Disease, and other disorders or known causes, such as tremors seen with Parkinson disease or head trauma:

Essential tremor [sometimes-called-benign-essential-tremor] is the most common of the more than the known 20 types of tremor:

The causes of essential tremor are unknown? Several genes as well as environmental factors are likely to play a role in a person's risk of developing this complex condition: In mild cases, treatment may not be necessary: In cases where symptoms interfere with daily living, medications may help to relieve symptoms:

Cmt disease has always been associated with the damaged "Peripheral" nervous system [nerves-sited-just-below-body's skin]:

Yes, many Cmt sufferers, like myself and my family, all have moderate tremor, but this is due entirely our Cmt Disease which causes muscle wasting + and muscle atrophying [wasting-away], which can also cause "shaky-hands", along with severe balance problems:

Your own Genetic Mutation [Cmt-is-similer ] is the inherited variety of essential tremor [familial-tremor], is also an autosomal dominant disorder, [Cmt-is-similer]: A single defective gene from just one parent, is all that is needed to pass on this condition, to their offspring(s):

Once again, [Cmt-is-similer]:

If you have a parent with a genetic mutation for essential tremor, you have a 50/50 % per cent chance of developing this disease, once again [Cmt-is-similer]:

Essential tremor is more common in people age 40 and older, [Cmt-is-from-birth]: However, Cmt symptoms may not display until later in life ie [teenage-years]:

Essential tremor can affect almost any part of your body, but the trembling occurs most often in your hands, especially when you try to do simple tasks, such as drinking from a glass, tying shoelaces, writing or shaving, once again [Cmt-is-similer]:

Essential tremor may also affect your head, voice, arms or legs:

Although usually this is not a dangerous condition, essential tremor will certainly worsen over time, and it can be severe in some people. It isn't caused by other diseases, although it sometimes is confused with Parkinson's disease:

Best of luck,and good health.....

John..... (Glasgow)

Whiterose profile image
Whiterose

Hi Miata43, my brother and family live in Toronto Canada, in my discussions with him it appears the Canadians are far advanced than us in the treatment of CMT. For instance Canadians can get B12 shots there, but here as far as I have asked B12 shots are not given. Personally I get B12 tablets from my local pharmacist. I would welcome any further information from across the pond on CMT management.

Miata43 profile image
Miata43 in reply to Whiterose

Hello Whiterose. Thanks for the post, I am sorry for the delay in responding. I also want to thank "John1945" for his indepth information. It was appreciated. Yes, we are fortunate that B12 shots are readily available to us in Canada. My B12 shot is administered monthly by a Naturopathic Dr. I do take one sublingual (under the tongue) B12 tablet, 2,500 mcg each day for the last 7 days prior to my shot. The 2 pkg's of Immunocal Whey Protein Isolate that I take daily keep my immune system up. I have not been ill since I started taking this product 11 years ago. I have friends with neuropathy, Parkinson's disease & MS that are treated with this protein isolate. It is proven to slow down muscle wasting by 10 - 13 % (along with regular exercise). It is listed in our Canadian CPS directories for physicians & Pharmacists as well as the Dr Desk Reference in the U.S.

Hopefully this has been of assistance to you. I will answer any other questions that you may have.

Regards & Good Health

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