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Ed in Baja

Member Since 02 Aug 2012
Offline Last Active Jul 15 2015 04:30 AM
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Topics I've Started

Neurological Problems Three Years Post Diag., gluten-free

09 July 2015 - 11:49 AM

Hi Folks,
Have not been on in a long time.
My main symptoms prediagnosis were neurological...I Went all the way to cerebellar ataxia.
I had great hopes that going gluten-free would make me magically better...but have found that while the acute ataxia andHD skin problems largely resolved, other symptoms are progressing. A forum member gently informed me at the time I was Dx'd that symptoms may progress. That the neurological problems are perhaps triggered by gliadin, but can continue with gluten-free diet.
Sadly, this seems to be the case. I have proximal motor neuropathy , a gradual weakness of big muscles in thighs and legs, muscle tightness and cramping. Third and fourth fingers go numb.muscle and bone pain.
Progressive memory problems. I am only 58.
Ibuprofen in morning, occasional Vicodin at night when it's really bad. Helps some. Walking difficult, bike bicycling really seems to help, as does moderate weightlifting. Massage is painful, but helps. Maybe there is some recruitment of new nerves fibers. Low stress also seems to help. Depression is a risk I am always aware of...it's easy to become so when it's seems that one can only do less, not more.
I would be pleased to hear from anyone else who is having similar issues. If you are, hang in there!

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