Ok..Dont know how many know my history. I had MS DX for awhile..benign case no DMDs in 2005. Then his PA says NO you do not..MS but there IS something neurological going on.. and it may be seizures along with my brain atrophy. THen MS doc says I never say NO Ms..hmm...what to do.. what to do. He refers me to another neuro in his office to rule out seizures. This neuro says no seizures..but sleep apnea and a rare form of narcolepsy..but doesnt get to finish his evals as my job changed.

I DO have some kind of autonomic problem that all are concerned about but have been mistreated at ERs and dismissed without any help.

My job changed so my insurance changed...another hunt for all new docs. My MS doc said in 6/08 before I changed that NO you do not have MS... ok.

Now I see this D.O. doc as my primary..she listens to my complicated hx and says.. "Are they sure you dont have MS??" Then later adds.. "Are they sure you dont have seizures??"

Because her OWN mother has an odd neuro muscular disorder that no one knows what to do.. she found an excellent Neuro at a hosp here and is referring me to him.. WHEN I am ready.. IF I want to!! ( I told her I swore off docs this year). She affirmed my frustration and years of seeing specialists..2 neuros..2 rheumatologist all with diff opinions.

This new neuro specializes in autnomic problems which all agree I have.. and neuro muscular problems.. which I have terrible spasticity and neuropathy that is getting worse.

Its so nice to be listened to..to ask ME permission when and how I want to proceed and believes there IS something wrong without dimissing me with RXs.

There IS hope.. now isnt' there??

Smiling.. Jan

Glad you found a PCP whose in your corner. It is a great feeling.

Well good for you! And GREAT for your doc. Keep her!!!!!

Been there done the flip flop ride with dx and docs. Lovely little trip you take doing that, huh?

I'm glad she HEARD you and LISTENED to you! WooHoo! Here's to more docs like that.




Best of luck following through---if you want to see a new neuro.

Yes thanks for your support. But she is pregnant and will deliver around Christmas then out for maternity leave. Doesn't matter I saw one of her colleagues and they know my RX regime.

Now I just have to get MY new insurance approve of this neuro as he is out of network but I think has a contract with our healthcorp. There is no one with his kind of expertise in our system..wish me luck

That's GREAT news, Jan. I hope they can get to the bottom of this once and for all!

Cherie

Wow...you dont see that every day...a sympathetic doctor that actually pays attention to YOU!

I had one of those once. He moved to California a couple of months ago and works at St. Jude's now. (I'm half tempted to follow him there...he was my favorite doctor...he was eye candy, and he listened to me!)

Now I'm stuck with doctors who have their heads up their....ahem!

hey...yeahhh Jan...good luck on the insurance coverage..and glad you have a pcp that is listening..and helping....that is number 1..even if not seeing any other drs..yeahhhh

I too had a pcp...primary that I LOVED..she moved away..she delivered the last two girls...and truely understood how hard to see specialists and get no real good info....

now I have a new primary the other thought I would love...I do like her..but only have seen her once...she must have way too many patients for how many hours she works..not quite full time. So you call in and cant ever see her....and when I went to reschedule my annual...with her...it was in Sept. when rescheduling first time to see her was Januaury..wow..

so now I was just in to see the PA...who I like...and was asked if I want her for my annual so they can do it sooner..since been a long time...so I said sure....

only thing with her..she is trying to understand and figure me out some..but the minute she sees I have seen a certain neuro she must know..she says ok so it isnt neurological as you have seen dr so and so....

I told her all the side kick drs they have sent me to over years..keep saying it is neurological. She did agree that when and if ready fro Mayo..she will refer it....

glad you found someone who listens..and helps her mom is going thru something....I think ppl feel for you more when they know...hugsss,sarah