I found a neuro that is a keeper!! finally yeahh
 

Yeahhh, anyone who knows me, knows I have seen a few too many neuros...ones that have said, headaches causing my troubles...(although I dont usually have headaches :p)
one that said fibromyalgia without doing any neuro testing, just said it..but didnt put in his report. lol
one that said anxiety causes my sxs but they clear when I am preggo due to being happy when pregnant....:eek:

so here I went again to a new neuro...WOW
short version....he spent hour or more with me just talking about my years of sxs, and information. Then spent good amount of time on an actual neuro exam. Ordered tests he was surprised had never been done on me, evoked potentials..(I have had vision one but no others)

he said he will again do another MRI, although others clear, he said he will look for spots on a new one. He mentioned LP idea...

and just listened and seemed to care about all my sxs and troubles, he wants to figure me out more before prescribing anything more than the neurontin I am on....

he said even if all tests are normal, he will be watching me..and said as in seeing me often and watching...thanks,sarah

lol egads your gonna go on about this for a month arent you, good:hug: lol I am so glad for you Sarah I know you have had a rough road regarding MS and docs as have many others, i am just grateful to hear you sound so positive about the doctor and the MS:hug: congrats

This is great news,Sarah. I'm glad this neuro is doing more testing. Good luck:hug: Hang in there and know you have a lot of us here who are behind you and here for you.

thanks all hehe frank lol...hugss,sarah

this is good news sarah.
i hope some answers turn up for you soon.

yes answers would be wonderful, but step one was finding a neuro that I would like to keep as a neuro, that will continue on the journey for my health. Unlike the others.

thanks all, so much, this place always cheers me up and helps me a lot with info and support!!

hugss,sarah

Wow Sarah, I'm happy that you finally found a good doctor. :hug: My doctor is 75 miles away and we go there once a month. It would be nice if he opened an office in town here, but other than that, we'll be driving up there to see him each month. :)

I'm so pleased for you Sarah! :hug:

I've been beside you in thought, during all those fruitless visits to endless doctors.

I've felt for you when you didn't get anywhere; when you were made to think it might be in your head; when a certain doctor insinuated you'd be better off pregnant all the time....:rolleyes: when you were given countless excuses but no explanations!

I really do hope that this time you get some answers! :)

I hope for your sake it isn't MS Sarah, but I imagine that any diagnosis at all will almost be better than this terrible limbo that you've been in for so long.

Good luck Sarah, and please keep us up to date.

Love 'n' hugs from Me! :hug:

Hi Sarah,
I think finding a good doctor, that you feel comfortable with, is half the struggle. Good for you.:)

I have had ones that I would hate having to go to them when appointment time came around. Or I would be dismissed too quickly because they are too busy. Some give lousy exams, like you said. Or they don't listen to you and your symptom problems.

Some are just trying to get the patient in and out of the office as fast as they can.

When you walk out of the office you want to have had your questions answered, not be in tears and think of all the things that were said or not said to you. If he's a keeper that's excellent. :):)

That's good news Sarah!

Glad to hear you've found a neuro. that will actually talk with you and then run a gambit of tests.

I hope answers to the questions come and a diagnosis will be presented.

Again, congrats on finding a doctor that will listen!

Niko

hallelujah, Sarah!

hope you finally get some answers.

:hug:

Sarah

I am really happy you found a Dr that listens. I have been lucky and have not had drs doubt me in any way and cant imagine that.

Good luck
laurie f

:hug:

I'm proud of you for even having the guts to keep seeing doctors after all they've put you through!

I hope this one pans out, really I do.

Sarah, so glad to hear you have a neuro you can talk to and most importantly one who listens.

I know I have been so lucky that both my PCP and neuro are listeners and take all the time I need when I'm there.

BTW, any trips downstate planned soon?

:hug:Glad to hear that you FINALLY found a doc who listens and understands!

That's half the battle! Now to figure out what is going ON! :hug:

Oh thanks all

Yes excited, so far I did go have the first testing he talked about, all the evoked potentials. I had the eye one before, but not the limbs or ear ones. He was surprised no one had the ones on my limbs done.
:eek:

Anyhow, that was wierd feeling on the limbs, but wasnt too bad. My right foot though, they were turning up the volume of current and watching for the toe to twitch (guess the toe or when arm done the fingers have to have a twitch before they record the nerves reaction up the body) anyhow, the lady holding the pad givign current said to the other no toe twitch yet...turn it up more...and the other was like ummm we are maxed out to the top:eek:..

then the took off and started again, finally getting a toe twitch enough. hmmm wonder if the leg will test out wierd too. but you know me my tests are always normal lol

so here out not getting too overexcited, about results showing things, or about finding out a dx, just trying to wait and let things happen how they do.

but the neuro is a keeper I am sure yeahhhhhhhhh

SASSY, I was suppose to come down this weekend, there was that Gymnastics tournament that was in my sisters name the MS invitational...(yes sisters initials were MS) It was going on today...:(

I was going alone with two kids at first, then maybe my mom was going to join me. In the week visiting my dad up at hospital, the drive too and from..my right leg started if drive for 20min or more, would go not only numb but sciatica pains..or just troubling. Hard to even hold down the gas pedal at times. SOOOOOOOO< I had to cancel driving the 8 hours due to this and that stinks!! (asked my bro in law to buy us some of the tshirts and I can send money)

hugss all, thanks too, sarah

Good luck Sarah. I am glad you found a neuro who is paying attention!

thanks flygirl, how you been dear?? hugssss,sarah

Thanks for PM.. but glad others are supportive you here.

Dont mind my stupidity...but what again is Evoked potentials? What is it supposed to measure? I only had EMG of my arms.. nothing of my bothersome legs.

ANd.. I wanted to add..that the more specialists that I see the more they know what to test for. Keep that in mind. Rheumies also know what kind of autoimmune tests to run..

did you ever see one?

Glad you like your Neuro.. is he an MS doc?

Warmly, Jan

Not sure if he is like a MS specialist, he has lots of pamphlets on MS, parkinsons, and a few other neurological diseases.

NO I have not see a rhymey so far...

Evoked potentials measure the timing of the nerves reacting to stimilus.. so for eyes, you stare at a checkerboard screen staring at center dot..and the checkerboard keeps flashing flipping the white and black squares.

each type you have electrodes hooked up to you to track and measure your nerve reaction time.

wondering if right leg or arm were reacting slow..hmmm we will see.

I read on line when typed in evoked potentials, talks about it being another step in MS diagnosing, or other nerve type things..but didnt mention what else...most focused on evoked for MS testing.

I am not expert though lol...

found that Teri Garr book Speedbumps on sale the other day, at walgreens so I bought it..looks like an interesting read.

I will probably have results in mail before my apt with the neuro...I asked hospital to send me copies too. My apt with this neuro is feb 18th.

as a new patient long wait to get into this neuro, this is someone I heard about, requested a referral to him back in summer..and this January apt was first time I could be seen ...wow..

hugss all, sarah and thanks

Hey Sarah!!

Remember you and I and so many others were on "limbo island" we thought we'd sink it!!

I'd swim away and then back and forth forever it seemed but finally found a great Neuro who would listen and did every test in the book.

She finally said "I can't diagnose you with a clear spinal (my sixth LP in 8 years) but since all your other tests have ruled out everything else; it must be a very slow MS progression."

Now she moved to Salt Lake City so I have to find a new one and dreading that....here we go again... :confused:

hey thanks AZ sorry about your dr moving, hugss,sarah

So sorry AZ for ALL you have been through. Thanks for sending me a PM.

Good luck.. hope you find a great doc..and a NAME for this monster we sleep with LOL

Warmly Jan

I'm so happy for you, Sarah :)!! I did the limbo for many years :(. I was treated for sooo many things that I didn't have! Fibro, RSD, bursitis, 'all in your disease', etc. etc. If I could remember all of the docs I've seen over the years who misdiagnosed and treated me for things I did not have, I would send them all some really 'nice' letters :D. Good luck with the new doc!