Renewed sympathy for you all.

[Salamander2]

Well,  I just left my neuro (previously referred to as Mr. Personality) and have been released back to my family practice doc.  The neuro had deemed me healthy, says I look great.  WHAT????  What about the fatigue, the numbness, the speech problems, the muscle spasms?  What about the flipping abnormal MRI???????? What about that Nerve Study that was just short of torture, that HE insisted I have?  You would think I would be happy that he thinks I am fine, but with all the symptoms,  I just know somethings wrong.

No offense to you'all but this is not a club I wanted to be in.  I feared limbo land almost as much as a diagnosis, and yet here I am.  I was so certain that I would be able to avoid all the pain and frustration that many on this site have experienced.  My heart breaks for all of you who are going throgh this.  What a helpless feeling.  

I am going to see my GP to discuss a new neuro,  I will try to get in with the Specialist in Palo Alto (Ca).

Sally

[wonko]

Grasshopper, the first neurologist is the toughest.

Trust me, though we accept everyone, the "club" never wants a new member.

I'm not sure of my status, how many merit badges to get from Jr. to Full member?

It was nice of you to post the outcome of your appointment in a way that acknowledges the difficulty of many, and not just yourself.  It was very unselfish, andI hope reflects that you know you are not alone and that we're here for your.

I hope your GP has some good advice, and am glad you'll be looking for a specialist.

I was just in Palo Alto about a month ago for work.  I love the weather you guys have, but fall on the East coast is some serious competition in my book.

Take care!

[Fluffysmom]

The up side of this limboland club is that you share it with some of the most caring and supportive people on earth.  As wonko pointed out, your willingness to sympathize with us rather than focus on just your own suffering means that you fit right in; go straight to the top of the heap!

I'm sorry that you've joined us in limboland; I've officially been here for about 7 months, and it seems much longer.  I've shared the same fear of a diagnosis, but now would much prefer it to being told I'm fine when I'm not, having a doctor guess I might have something else that doesn't fit at all, and all that stuff.

I'm on neuro #3, an MS Specialist.  I have become very proactive; keeping complete records, researching ahead and asking respectful but pointed questions that can't be ignored.  It kept this Specialist from booting me out the door, that and the fact that my last neuro said I don't need to see a neuro.  The Specialist agreed (as does my PCP) that I need a neuro.

She sent me for tests that don't show much, and sent me for one that might, but will take months to get in to see the doctor and then get the testing done.  I took matters in my own hands, found a highly-recommended doctor that can do the required testing plus more, that I'm able to see much sooner.  I see her tomorrow, so keep your fingers crossed that something good comes of it!

I hope your GP is able to help you get in to the Specialist in Palo Alto soon, and that this Specialist is very good and thorough.  

You'll still be a part of the forum family, with or without diagnosis, but I think we would all prefer to be without the hopeless/helpless feeling that can come with limboland.  Remember that it is also full of love, hugs, caring, support, joy in small victories, and a whole bunch of good stuff.

Hugs from a complete stranger that cares, :o)

Kathy

[Sunnytoday]

Hi there, I posted on your other post about the neuro eval.

I just wanted to add that limbo-land is never fun, and even i "thought" i was on the fast track out of it in May, it seems to never work that way.

I'm happy that you could get in to a specialist, I hope that goes well for you. Keep us updated, and be sure to take an open mind, a time-line and a lot of questions to that first visit.

A friend and limbo-lander,
~Sunnytoday~

[Salamander2]

Thanks for the comments, they made me smile.  I was in a baaaad place earlier today.  I worked at the evening clinic tonight and one of the providers was a physician assistant in a neurology office.  She gave me more info in 15 minutes that the neuro gave me in 4 visits.

The thing I want to share is that she says don't give up!  Get aggressive, push for answers and ask "if you don't think it's MS what DO you think it is"?  Tell them "something is wrong and I need you to help me find out what it is".  If they can't tell you what they thing is wrong,  ask them to send you somewhere you CAN get an answer.

Hugs to all,
Sally

[wonko]

I think your advice about getting aggressive is right on.

Too often, I become very meek (which is WAY outside of my normal personality) when I'm talking with a doctor/neurologist.  I settle for vague and nonsensical explanations.

Why?  Since I've been feeling sick, out of the blue, for months, I'll gladly jump on board to any idea that it might just all go away overnight.  We're all vulnerable when we are seeking help.  My hindsight always sees that I was not demanding enough at my appointments.

I recently met with my PCP to review this whole mess.  I've been seeking medical help for "this" since Jan '08.  I asked her "What are the top three possible diagnoses for what is happening to me?"  She reviewed the notes from my neuro.  The answer?  There are none.  The official word is nothing.  

If I'd taken the attitude you state above, maybe I'd be further along.  But instead I've settled for the "wait and see" ideas.  Honestly, I think the doctors don't know what is wrong with me.  But instead of being interested in helping me figure it out, they are taking a more lazy approach, probably hoping that I just give up and don't come back.  Honestly, I think it is pretty lame.  I wish at least they would be more honest and upfront with me, or send me to someone who can help.

I'm glad you are off to a better start than me in terms of dealing with this situation.  Hopefully this saves you time and frustration, and hopefully I finally learn my lesson!

~W

[Salamander2]

I'm an "Adult child of an Alcoholic",  and it actually effects how you related to others.   It has made me very compliant and obedient.  Accepting of what I am told by the doc's, not being argumentative.  But yesterday I snapped. I decided when I walked out of that Neuro office I would continue to look for answers instead of being passive.

I think a doctor should be ashamed to tell you she has NOT ONE, idea of what could be going on with you.  You (and all of us) deserve better.

Sally