[Tulips]

I wrote to a neuromuscular doctor who tool out his time to speak to me over the phone about my situation. He explained so much to me and said at this point to look for genetic factors but it can get murky.

He said to look for sodium channel 1.7 gene and def see a movement disorder doctor. To look for startle syndrome with gene mutations.

He said if it's not a channelopathy the there are enzymes and protien and unfortunatly it's hard to figure out.

He told me believe me that we don't know everything yet and this area of study is so complicated. Anything can be faulty and send while body crazy.
He said when patients like you go to doctor and they can't figure this out they are frustrated as much as you are and believe it or not ever time upkeep going back they think who know she is back!!

I told him the big university doc I see won't refer me over to the movement disorder clinic and he said the problem with that is ego.
I mean he was so honest about how system works

He said if he refers u to his Collegue then they are get mad cause sine he couldn't figure it out they don't want to dumped with this case. Plus it's ego thing that the first big head of the department couldn't figure it out.

Plus he said in cases like yours head to toe and everything normal they think is all in the head so they have sort of given up!
He said I believe you but it's hard.
When these things don't show up it's hard and to even try to do gene testing it self is hard.

He gave me some names and test options to pursu.

He said thy look at brain, spine nerve and muscle and when all that is normal
Then it gets murky and patients end up suffering.
He said doctors do there best but they do run out of options.
He said this area of study is so vast that it could be anything from channelopathies to protien and enzyme and neurotransmitter problems.

So basically I am screwd!!!'

He said to keep pursing and at his point to look for genetic causes.
And don't waste money on repeating same things.

Good luck to all of us!

He said best bet is to go to a big university place ( which I have) and keep pressuring them cause private doc will not do research as he disentangle get paid for it. And patients like me waist time at and money.

Tulips
My ramblings!