This is where it stands

[saveone]

Guys I know I have not been on here much but my symptoms have been kicking my a$$ to put it mildly.  The fatigue and excessive sleepiness has overwhelmed me.  Getting through the day has been a challenge.  It has cooled off here considerably and I am feeling better.

So I thought I would update you.  I kicked my neuro to the curve...fed up with his BS.  My ENT sent me for a VNG and auditory testing.  I have bilateral hearing loss at high frequencies due to sensory loss.  He has determined based upon the results of the VNG my balance issues and vertigo are CNS related.  He stated he saw no physical cause or disease.  He is sending me for a speech evaluation with videostrobscophy on Monday.  DX - spastic dystonia (sp?).  It may also provide some insight into my swallowing difficulties.

The ophthalmologist dx = demylenationg disease with ocular involvement.

The gastroenterologist stretched my esophagus.  It has provided some relief.

The fatigue and excessive sleepiness is not due to my anemia.  My last blood work everything was within normal range.  I am doing a sleep study on the 20th.

I see a new neuro on the 28th.  I am not getting my hopes up.

I am about to be discharged form PT.  They have done all they can and it has helped.  I only fell once last month as opposed to 2 or 3 times.  :)

I have an OT eval on the 16th.

I think that about does it.  I hope all of you are feeling well.

terry

[saveone]

I was sedated.  I didn't feel a thing.  He did it the same time as the colonostophy.  The last thing I remember was being told to roll to my left side.  I would have thought my throat or esophagus itself would have been sore but no.  I couldn't tell it had been done.

terry

[Janette2836]

Terry,
Thanks for the update.  Now - one of the procedures the doc did doesn't sound very fun - stretcing the esophagus!  That sounds painful - I had no idea they could do something like that.

You have been busy - no wonder you have been tired  :)

Take care & know that we are pulling for you.

Janette

[Lulu54]

Terry,
It is good to see you could scrape together some time and energy to update us.  That new neuro will hopefully do the trick for you.  

So glad to hear the PT has reduced the falls.

Keep us posted, ok?

feel better.
Lulu

[saveone]

Is that like a vesicare gotta go...lol

Thanks guys.  I have been busy.  Some days both dr appts and PT.  Add to that just trying to exist without the house scumming over or starving to death and there was nothing left.

Thanks for the good wishes, I sure can use them

terry

[Fluffysmom]

You've been busy for someone who's a$$'s been kicked.  Sounds like some definite progress is being made at figuring things out.  Now if the new neuro is on the ball...

I hope all the best for you, and hope that you have more better days soon.

Hugs,

Kathy

[Quixotic1]

So good to hear from you, but I was afraid you were suffering.  Thankyou for the update.  Sounds like the ENT and GI are on the ball with documenting the neurological nature of your problems.

Good luck with the new neuro -

oops gotta go!

Q