LDN for myotonic dystrophy??

[Guest guest]

I am taking LDN for SPMS, since 10/09, and doing well enough.

My question, however, is for a friend of mine. She was very recently dx'd with

myotonic dystrophy, a form of adult-onset MD. While I know little of this

condition as yet, my understanding is that it is not auto-immune in nature. It

is a progressive and incurable condition that affects many systems.

Currently she is experiencing some very difficult-to-handle symptoms, among

which are significant cognitive impairment (word-finding, forgetfulness,

confusion).

She is so recently dx'd that she doesn't even know yet who her main doctor will

be, if she will have a main coordinator of care, or if she will just continue to

see the many specialists she has seen (cardio, GI, ophthalmology, neuro...) for

symptom management.

She is a 40 year old with young children. As you may imagine, she is overwhelmed

and scared.

I told her I would ask the group here if anyone knew whether pursuing LDN for

myotonic dystrophy might be worthwhile.

Anyone with any thoughts??

Thanks in advance!

MJ