Yet another new neuro today.........

[Stillinlimbo]

Hi my new friends
GOing to Thomas Jefferson to
day, for yet another consult with a neuro. Ugh. At least this time, I'm not going all excited that I'll actually get some answers and help like I did all the others, only to leave in tears, or angry, or worse off.
I'll update later!
Cathy

[Patze]

Good luck my friend and update us when you can!  Oh, I'm on my third neuro, so hang in there and I hope that this one "sticks" for you.


Patze

[Stillinlimbo]

Thanks Patze
No luck,,,,,,,and I'm just so defeated. No where left to turn really. He said, "You do not have MS, for sure. " He then went on to say, and I quote...."My recommendation is that you quit smoking, join a gym, give this search a rest, and come back in a year if you are still symptomatic. "

?
I dont know what else to say right now.
 

Cathy

[dbab]

It's really tough with neurologists because most tend to focus primarily on MS, epilepsy, and migraines.  Waiting a year is CRAZY!  I hope you are able to find someone, have you spoken with your primary doc or rheumatologist for a referral?

[Stillinlimbo]

I refer myself these days, cause one, my insurance doesnt require referrals, and two, my primary is more lost than I.
This was my 8th neuro,,,,,,,,,I'm really at a loss. I do however, have a lip biopsy scheduled for next week, (was rescheduled from LAST week), so, maybe that will be positive,,,,,but, probably not. Starting to think I'm just nuts, and so does my family so,,,,,,,,,,,,
Thanks for responding though.

[Chickpea]

Hi Cathy

This is so awful for you.  I've been there - as have many of us - and it's lonely out there in limboland.  I'm so glad you could come and share your story with us.

I think it's time for neuro #9!  Or maybe a rheumy who understands SjS?  My neuros said I had something but they didn't know what, and this went on for years.  One top neuro told me to 'go home and give myself permission to be well'.  It took a confident rheumy, a Schirmer's eye test and ten minutes to diagnose SjS. 

Are you getting any treatment?  Maybe you'd be better off finding a doctor who will treat your symptoms and not delay things while they look for a diagnosis.  Whatever 'label' you finally get, it's more important to make your daily life workable. 

Thinking of you - Chickpea

ps You're definitely not nuts!  Unless we all are ... and I sometimes wonder about that!

[Stillinlimbo]

Hi Chickpea,
No way,,,,,I am never seeing a neuro again. Ever! And no, I am not being treated. The only thing my GP does when I call to say that I'm in a bad flare is to give me more prednisone. And, it helps, but, there are downsides to using steroids, and not only that, I want to know what we are masking! I have two more hopes. One, will be the lip biopsy next week, although, I'd bet the farm (the one I'm going to lose soon due to not working), I'd bet, the biopsy will be negative. And then, theres a doc at John Hopkins, that actually responds back to my neurotic sounding e-mails,,,,,Julius Birnbaum,,,he has agreed to review my records and let me know if he can help. So, I am so broke, that I dont even have money for the postage today. BUT, I do have all my records good to go, because the dang neuro today did not even bother to look at them.........
So? Two more trys and I'm out.
Cathy

[Patze]

Oh Cathy,

I'm so  sorry that you've been around the mill and then some with the neuro's...wow, and I thought I had some turkeys.  Dang.

I'll keep my fingers crossed in hope that Dr. Birnbaum can help you, please let us know what he has to say, okay?

Hang in there and take care -

Patze