Lailavila -Hopkins is probably one of the...
 

BEST places you could be to get diagnosed! I'm posting a list that comes out annually and Hopkins has been 'in the top 3' for the last five years!
http://health.usnews.com/usnews/heal...pecihqneur.htm
OK that said, IF you look at Liza Jane's worksheets...it maps out all the different routes of testings that neuros do [or SHOULD DO] to check out all other options and zero in on what the real problems [diseases/issues...whatevers are]
One thing Hopkins is very good at is LOOKING AT THE WHOLE PERSON. From all you have said that is important, and they've boodles of resources at their fingertips...Your insurance is covered thru them...go for IT!
Just understand a couple of things: One- neuros love to go slow with the testing and evaluations...they are very cautious people as a group [usually]. But they can move on testing and other evaluations soo quickly it can make your head spin if they think they are 'on to something'. If they move quickly, count your blessings and move heaven and earth to GET there and be tested! Two- you may not get 'along' comfortably with this particular neuro, but be HONEST above all! Telling little lies or omitting some things could be crucial to any diagnosis if at all. Also, keep in mind, that once you are in that 'system' you may find a doc you like or feel more comfy with during all the testing and such. Should that be the case, ask that doc to 'take you on' if they feel it's OK...worth a shot? Nothing ventured, nothing gained.

Relatively speaking...the 'what's wrong with me?' issue for me neuro-wise took just over a year. I was not internet-wise at the time, just running on gut-feelings! When I was diagnosed with cancer...it was 6 months from date lump found to final implant surgery...Talk about whirlwind? My mind was in a turn-around fog half the time! The only reason I know my decisions were right was that I ALWAYS followed that instinct. You have that going for you in you! You just have to learn to direct it in ways that will best benefit you.
I definitely do not want to denigrate any of the hospitals and neuro resources near me, but, honestly I am a bit jealous that you are in a HOPKINS neighborhood! These days, tho, I'm not sure I'd survive the trip!
SO...:hug: for now, go forth and fight the fight, do the tests, and be more confused than ever...comes with the territory! - j

Thanks yet again!
 

:) You are all so awesome. I was so despondent just a week ago, I'm so glad I picked up that phone and made that appt!...I even had an office credit so didn't have to pay. I am working on getting Liza Janes chart downloaded, my brother can help with that....and also I know there is a Marc train that runs from my town to Baltimore....with a shuttle I think to hospital. We didn't have too much trouble getting there at all....but getting out even dh got on wrong road...I know I couldn' t do it. I guess I will go for it ..it takes awhile to get started up anyhow...records have to be faxxed, last time I needed a letter....he acted like I would be going to the same doc, I tried to explain there was a coordinator who put you with someone....he said we send people all the time then stalked off. lol...I can figure the rest out...Yeah I am lucky, they are in my referral book....that place is soooooooooo big,,,,you get an ID its kinda crazy, lots of people with really bad problems its like a small city..I hope I can get some help....I noticed on the mri slip he had written "dymyelinating disease" so I guess checking for that with the mris....got those done today too. I love the support here. Thanks from the bottom of my heart and I will try to read some others now that I feel a bit better.....:p

I live
 

about 90 miles from Barnes,it's good,went to Mayo it's good use to
go to Cleveland it's good but it's all those dr 's here, med student read fast
4th year you present,the big shot you went to see you don't see or they
shake your hand,pat you on the back on the way out. But i know i still
want to get me a Dr. who went to one of those top 10. humm Sue

You are NOT in any
 

Shabby treatment situation...HOW you Present your issues/conditions, and where you go from there is well, gonna/GOT to be good?... We all have to think positive here! As good vibes are all we GOT!..

I see my neuro...he asks how are your doing? My response is always: as good as can be expected- not looking for miracles here, but would like one or two if available..Not that I'd like different mind you! As in worse...You get my drift.
Being cool, calm, articulate, have what brain you have left working and intact...hey. these are key features to keep the doc's working FOR YOU!. As for the Oh-my-goodness'es! Well, you ARE allowed those breakdowns AFTER the appointments...not during ever! Silly but true, they tend to respect US for the non-breakdown-ness... I do believe YOU are on the right road? One of those silly gut feelings... - You will get to where you need to be! I know it!

YOu have learned soo far...how to describe pain, the levels and how it disables you. You have learned how to do all that to DOCs who sometimes have no reference points as to your real discomfort... you are getting tested for all the zillions of issues that may or not be the the 'cause', but also tothe effects...which lead to proper treatments. TREATMENT of the pain and then all the other stuff is what all this is about! Keep strong and STUBBORN...you WILL Get there! Tho the next week won't be it, as there seems to be a holiday stuck in between...somehow.
You have made heaps of progress tho..just get those tests done! Not fun, not easy, but...you will achieve lots more doing it all!!!! Good thoughts and heart - plus a few hugs! - j

Hi dahlek
 

I just noticed you are in the DC metro area like me....I am near Crofton, which to me is real far from Baltimore.....I am wondering if Anne Arunderl medical Center has a good neuro dept. Ah well....this could be a bad thing so maybe I should make the effort. I have noticed just the past few days my right pointer finger "buzzing" slightly sometimes....:eek: again... thanks all for the great support :hug:

I'm back
 

Sorry no posting so long, docs on vacation, we went on a short trip....well I got another mri this one had some more lesions....signs of possible demyelinating disease and to consider vascular. and maybe ischemic vessel. So what type of Doc does treat Vascular diseases? Before I even saw this mri I had noticed a dark spot, dent like thing on my nose bridge,,,then my dh noticed it..so of course I start looking up vascular disease and the Wegener's Granulomatosis causes saddle nose deformatity! I am wondering if I should get this checked as sx match alot of other stuff going on....this is a nasty disease....I don't see an area for vascular disease here, is it rheumatology? Here we go again. I finally got referrals and records are being copied for my JH appt....which hasn't been made yet...I am slowing down a bit its too much work. The neruo was going to do a spinal tap but then backed off and decided to see what they have to say up at Hopkins! MS isnt a PN disease, I think he just wants to get rid of me! IF I go up there hopefully they will help me in some way this time....calling rheumy now....

confused
 

I called a vascular surgeon in my referral book and they said a vascular or thoracic surgeon should deal with it. She said my neuro should have advised me....well we know how that goes....anyway she said I would need a referral...from the research I have done it seems I may have some kind of hole or collapse of bridge of nose. Wow. Whats next.

I went to ENT doc
 

re my nose dent and he is ordering a ct scan to get started. I am learning the art of skipping my pcp doc for the referral and just calling and asking for it. they seem to be ok with it...Just got my records from neuro...what he writes and says are so different, meaning he says alot in the report, but not in person....I guess he saves his energy for the paper...well he has lead me in the right direction so I am just trying to sit back a bit and go with flow....thanks to all again...