So today FINALLY they call and schedule for part two of my sleep study--part one WAS abnormal is all they'll tell me.

Still it's 10 days off B4 I get part two--will NOT end up with my walking out with a machine--then I wait for results of CPAP assisted studies--then wait for an appt back with Dr--who then refers me to an equipment supplier--wait for an appt with him to come to my home and set up the machine. <sighs>

GEESH!!!

But I guess later is better than never, right?

In the meantime, tomorrow I have sceduled an appt with my GP to discuss tx for vitamin deficiencies --AND--in HOPES to get a referral to Dr. Randy Thompson in Pennsacola.

Currently, I'm STILL not sleeping beyond 4 hours per night. Vitamins, water, and swimming are helping me thru the day--but I'm VERY tired. BP is not dropping as low on Lopressor--but I'm still having some low BP weak spells (90/50) and now having high BP spells (159/128 yesterday) to go with them.

I need you guys to say some prayers PLEASE--or send me some good vibes --so that--somehow--some way--I'll get an appt to see Dr. Thompson. I have no doctors here left with ANY clues as to what to do to help me.

Thank you all in advance for being there, guys!!!

I am praying for you. I am from Pensacola Florida, isn't that doctor far away from you. I currently live in Alabama and have a doctor who actually helps his patients. He dedicated every third wed of the month just for patients with dysautonomia

Sending good vibes and prayers your way Sandy.

I think once the docs try all their meds on us and if it doesn't help they don't know what to do with us. I find that is the situation I am in. Now it is just lifestyle adjustment and a lot of praying!

Good luck.

Donna

Yes he is far away--and I really don't know how I'll stand up to the trip--but I'm doing the best I can to find someone even this close. Dr.Thompson HAS dys--and trained under Dr. Coglin in Alabama--treats ONLY ANS disorder patients--NO ONE has ANYTHING but good things to say about this doc.

And, just once, I really NEED to go to a doctor who actually "gets it." Before I just give up on them all. Maybe you know what I mean?

No doubt you're right about this,Donna.

But I really NEED to give it one more shot--since no doctor here has a clue. Just in case there's a cause other than genetics to address. I've actually had very little testing (of the right sort) done.

Besides which I need lots of info--crisis treatment plan--anesthesia plan--normal treatment plan--and so on.

I've already made lots of life-style adjustments--excercise, vitamins, water loading, and so on.But, maybe, since he has this, he'll have better ideas?

At least I have to try. My hubby is an awesome person who deserves more of a wife than I am lately if there's ANY way possible. Ya know?

Sandy I am praying for you right now. I understand your struggles, I had seen four different doctors till I finally found one that is caring, smart and actually wants to help. I wish you could see Dr. Ross Davis, I know he is in Alabama away from you, but he would at least help you with a diagnois and treatment plan. He could even go through your regular physician. I believe in Dr. Davis 100%, he is not in it for money. Matter of fact he has a whole floor with equipted with the ability to test you and talk to you in the same day.

Dr. Coghlin first diagnosed me. And Dr Davis knows him well. Dr. Davis has been handeling alot of his patients since he is getting older and I think he is also sick.

Sandy,

I know about needing to try and if you haven't found a doctor in this area yet you are comfortable with then all the more reason. I haven't given up.....I still e-mail my POTS specialist from time to time to see if there is any new treatment or test but I think I've tried them all so far!

I also am in close contact with my ME specialist since I do volunteer work for him but unfortuntately besides the diagnosis and what I have tried he has no answers either. He does know I fell ill with an entrovirus. For three years back in the late '90's he sent many of his patients blood to a lab in Scotland that did entrovirus testing not available her and all three years mine - and a few others - came back positive for an ECHO entrovirus. That being said there isn't much to do for it. So even when there are some answers there are not always solutions.

Keep us posted.

Donna

Thanks guys!

Will let you know when/if I get an appt.

Hi Sandy,

Lots of thought of you coming from this side of the Pacific.

Keep on keeping on. It's a damm trial seeking, finding and seeing a doc who understands and can help us when we are so sick and tired.

Sandy -

I am sending happy thoughts and many prayers your way that all will be well. Hang in there......we're all pulling for you!