New here!

[tellme]

Hi all!

Diagnosed in 2013, with FXTAS, that's fragile X tremor/ataxia syndrome.

The characteristic features of FXTAS are intention tremor, which is trembling or shaking of a limb when trying to perform a voluntary movement such as reaching for an object,and problems with coordination and balance (ataxia).

Typically intention tremors will develop first, followed a few years later by ataxia, although not everyone with FXTAS has both features. Many affected individuals develop other movement problems,such as a pattern of movement abnormalities known as parkinsonism, which includes tremors when not moving (resting tremor), rigidity, and unusually slow movement(bradykinesia). In addition, affected individuals may have reduced sensation, numbnessor tingling, pain, or muscle weakness in the lower limbs. Some people with FXTAS experience problems with the autonomic nervous system, which controls involuntary body functions, leading to the inability to control the bladder or bowel.

Individuals with FXTAS have a mutation in which a DNA segment, known as a CGGtriplet repeat, is expanded within the FMR1 gene. Normally, this DNA segment isrepeated from 5 to about 40 times. In people with FXTAS, however, the CGG segmentis repeated 55 to 200 times. This mutation is known as an FMR1 gene premutation.

At the moment, I take Sinemet 25/250 4-5/day, Sinemet CR 25/200 1/day, amantadine and pramipexole. After 10 years with LDopa treatment, I have more negative effects, like painful dystonias, in phase "off"; in my case, when dopamine level in the body is very low.

Actually, I want to reduce Sinemet, and I'm very happy to be part of this comunity. I have already read an incredible amount of post, very interesting and helpful, about naturals treatments and supplementation. The challenge now is to know what'is better for me..

Thank you very much!

(Patient Support and Advocacy Resources : National Fragile X Foundation - fragilex.org/).

[park_bear]

Thank you, tellme, for sharing this knowledge of fragile-X!

[Hidden]

Welcome to the forum, tellme! I hope you find useful information here!

Art

[M1tz1]

I have intentional tremor and was told I don't have PD. Strangely, I have been having balance problems and am finding John Pepper's Conscious Walking technique is very helpful.

[Alleymay1957]

Hi there tell me

I was taking up to 8 pills a day of sinemet CR now I'm down to 4. It was bringing on too much dyskensia. I'm comfortable with 4 sinemet 100mg/25mg a day, 3 amanadine, 3 mirapex a nd 1 azelict(Apo-Rasagiline) and sit as little as possible. The answer to this stuff is stay active, eat well, take meds on time an d have a positive attitude

[grapes6]

im taking immediate release 25/100 l dopa now-i pop em 'as needed' with a limit of 6 a day.id try rytary but inurance only covers generics-good luck-im looking for a holistic approach while staying with conventional meds-good luck