Well, Swear Swearity Swear, Doc Has Gone Through Alllll My Stuff

[shoe]

Last month, after many years of searching and being told that I a)was overweight b)anxious c)depressed d)faking it e)drinking too much caffeine f)not drinking enough caffeine (...you get the idea...) I got sent to a new GP by my former (but waaay cool, and I am grateful for her) GP. New GP rocks, and last week states that he's pretty sure it was some sort of dysautonomia. This week he's nearly allll the way through my records, and he's sure it's a dysautonomia, and in light of what was there, tests in the past and what he sees now, he's also reasonably sure it's not an identified or particularly categorifiable type. Main reasons center on some really quirktastic neurological issues (he and my husband spent five minutes tapping my jaw and watching, I guess, one little spot on my lip twitch. Dorks.)

He still wants some more fun tests (and it doesn't look like I'm getting out of this without a lumbar puncture. The one test that scares the crud out of me -- that's it.... Ack.) We're going to nail out where the biggest problems are, tackle treating them first, and go on.

Funny though. He tells me, and with the appropriate gravity (no pun intended). And I'm exhausted, not thinking, and not terribly surprised. He asked how I was actually kinda not feeling so horrible about it... and all I can think is... Man, I knew it wasn't going to end well. I am actually just really really really relieved that someone connected the dots finally and I can get whatever I can get of this behind me now. Of course... I tried to say it and got all blubbery.

Now my husband wants to keep tapping my jaw. Dork.

It's hard, it's so not good news, but I know I can at least feel better to some degree than I do now, even if it isn't going to be predictable. And this is what I have to hold on to. But I thought I'd give the update... (I have another TTT -- I guess I had some testing previously standup/sit down/lay down, blood pressure, which indicated there's orthostatic bp fluctuations in keeping with dysautonomias).

[flop]

Hi Shoe,

congratulations on finding such a helpful doctor - to have someone go through all your notes like that is fantastic, and even better that they are coming up with ideas to fit all your symptoms and what tests need to be arranged. Let us know how things work out.

Flop

[potsgirl]

Hi Shoe~

Just a quick note to let you know that the lumbar puncture, while not one of my favorite activities, isn't too horrible. The most important thing to remember is when you get home after it, lay down and rest for at least a couple of hours. Also, a good round or two of Tylenol (or...pick your poison) is in order, because the headache afterwards can be excruciating. Dark room, pain killers, fan on, husband as servant, and a good nap. Almost makes it worth it.

Let us know,

Jana

[erikainorlando]

Shoe,

I am almost jealous! I wish I had some one with that degree of knowledge............sounds like he is aware and comfortable with dysautonomia! What is the lumbar puncture for?

I have a great EP but I have been thinking of still trying to see this doctor that specialized in dysautonomia. He is out of my network ( will ptobably have to pay for it myself) and it will take months to get in but he seems knowledgale....and not to complain with too much emphasis but I have been really suffering and I would really like my life back if possible!!!!!!

Erika

[morgan617]

Shoe,

It's amazing the things can thrill dorky men isn't it?? LOL

I've had lumbar punctures. Never had any problem, they should let you lie there for about an hour or so after. It wasn't painful and I never got a headache at all. It has actually turned out to be one of the easier tests I've ever had. Good luck and it sounds like you've got a winner doctor! Even if he's a dork! morgan

[janiedelite]

Hi Shoe,

Yes!!! It was such a relief to finally be given a name for my myriad of symptoms. Congratulations! I'm so glad you have a doctor who believes you and wants to help. I had a lumbar puncture too, and agree that it wasn't bad at all as long as you lie down flat on your back for a few hours after in order to avoid a spinal headache.

yay!!

[shoe]

Hi all -- I'm replying to me to reply to all of you. That's how I roll.

There's not a real specific reason for the lumbar puncture (which sounds funny, it's not like, "I took a side trip to see the world's largest ball of twine as we drove through.") I think he's now stuck me into the "monitor everything to track any changes over time" and that's one of the areas I think he suspects might have changes. For sure my biggest fear with that (aside from the "eewww" concept of it all) is the headaches that come after sometimes.

The bad news is, he teaches, so I lose him for a year, but he handpicked his successor and said he is in no way invisible to me or her (he gave me his cell, and told me to please go easy on him. Hee. I hate the telephone, and I won't put him on speed dial so there's no chance the dogs can step on the phone and call him).

Walking out of there, my husband turned to me and said, "Is it wrong I want to kiss that man?" Heh! I think my last GP both believed me and took me seriously (I know she did) but she was less the "forensics" type of doctor and more the "I have a strep throat" sort -- which is fine, and I love her to bits for realizing that and getting me to this guy. And it was really hard to hear him say that this probably isn't going to get any better at its core, and managing might never be a wonderful success, but it wasn't as bittersweet as I thought it would be. Again, when he asked why I wasn't so riled up, that's when I started break a bit... I knew this was coming, and probably the only thing that was worse than I was expecting was that I was hoping that it was something that management was either a bit easier or a little more of a known quantity. But it's a lot better, god help me, to hear "You have a serious problem and now we need to work through the best ways to fix it" than "You're fine. Suck it up and go home and deal with it. Nobody feels great all the time." (Arrrgh! If I had a dollar --- or at least didn't have to fork over a co-pay, for every time I heard that I'd be rich.)

But he is my hero right now. I mean, he went through, slowly, carefully ALL my records over the past month. (He's nearly finished). I brought him some, the surrounding hospitals sent him the rest.... But what I brought him was seriously in one of those accordion file archival envelopes and was about seven inches thick. I think the worst part is there must have been loads of stuff in there that just didn't really apply.

He apologized two weeks ago. I mean -- I think the world of this man. I went in just to have a TB test read (again, he didn't think it was TB, of course, but I was there, it was easy, and we'd all feel dumb if it was missed). So my husband and I go in, nurse looks, test negative, and as I'm hobbling out with my cane in one hand and husband on the other side... He walks into the lobby of the building. He's like, "Hey, how are you!" And then he sits me down for an hour in the lobby (no appointment, HIPPA laws be dammmmed!) and just talks. It was so hard to sit that long, and I'm sure he was noting that. But he apologized and said that he'd one day love to present my case at some of the teaching conferences. Not in regards to my health problem itself, but because he said my case had to be one of the ugliest ones in terms of falling through the cracks, doctors seeing a problem but tossing it out once the most likely test didn't corroborate, and basically not being considered as a patient or even a human, but more a collection of complaints and lab reports -- and that's a major failing of how medical professionals are being trained. Again. so hard to hear, but at least I felt like for all that time I was saying "I am getting kicked around..." I wasn't being overly sensitive. I was being kicked hard.

In other news... curiosity got the better of me. I tapped my face (right side does it) last night. I'm not sure if it's necessarily hours of uproarious entertainment (or required calling everyone in from the waiting area to see, hee hee) but the twitch is really odd. It's one little muscle independent of the rest of my lip. So that looks weird, and all I can think is... This little cause/effect thing was recognized and named by some doctor. Wow. There was a guy with a whole lot of time on his hands.

[janiedelite]

But he apologized and said that he'd one day love to present my case at some of the teaching conferences. Not in regards to my health problem itself, but because he said my case had to be one of the ugliest ones in terms of falling through the cracks, doctors seeing a problem but tossing it out once the most likely test didn't corroborate, and basically not being considered as a patient or even a human, but more a collection of complaints and lab reports -- and that's a major failing of how medical professionals are being trained.

Wow! That just warms my heart to see a doctor being concerned about his patients FEELINGS. Thanks for sharing your story!

[pat57]