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Old 02-14-2008, 12:06 AM #11
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Originally Posted by momXseven View Post
He said it could be ON but there were different kinds of ON, or something like that. So I'll just have to wait until he calls me, who knows when that will be.

Different kinds? I know it can be caused by different things (MS, Devics, some think it can be a prelude to MS..). You'll find out more when he looks at the test results and (hopefully) calls you back.
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Old 02-14-2008, 08:12 AM #12
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Originally Posted by Nancy T View Post
After swearing "no more doctors, ever" last June, of course I'm seeing doctors again. But my principle has been to keep things very specific: only ask them for very specific things, don't ask questions about my symptoms.

I see the ophthalmologist every six months now, but only for pressure checks (eyesight is nonnegotiable).

I saw the ice-cube, don't-ask-don't-tell internist only to get my anti-dizzy prescription, and I only went along with her BP and cholesterol meds to humor her (she only cares about my blood--that's all I am to her).

Now I'm seeing a family practice doc at my new insurance, but only to attempt to get an ENT referral for a hearing surgery/device (which I subsequently found out the insurance does not cover--though they wouldn't tell me that BEFORE I signed up, of course).

Surprisingly, the FP doc actually asked questions about my dizziness and scheduled a second appointment (HIS idea) because he wants to examine me further and talk about the musculoskeletal stuff. I see him Friday and it will be a true test for me, whether I can hold my tongue and not tell him anything except what he asks. Because I know from experience that telling your symptoms makes them think you're a hypochondriac.

The thing is, I don't care. I am so used to it. I totally expect doctors to lose interest faster than a snowball melts in hell, once they figure out that the neuros have branded me a hypochondriac. When you don't expect anything, you don't get disappointed.

That's why I'm not surprised nor upset that the rheumatologist I saw last June did not take me seriously--I knew that from the appointment, and the report I just picked up confirmed it. He (and his intern) didn't write a word about my biggest complaint (strain in upper legs when walking). Basically they just said, of my achiness and joints and other symptoms, "not my department, in fact not a medical department at all" and smilingly sent me home with no tests and a very limited exam.

The spine specialist's report (thought I'd better collect these so I can tell the doc on Friday in case he asks what they said) was probably missing a page, either that or he didn't dictate anything except a short paragraph about a follow-up phone call.

Anyway, the new doc did look concerned when I mentioned the leg strain when walking. That is how I would THINK a doctor SHOULD react, but just watch--by the end of the appointment Friday, he will have gotten that little smirk and be telling me something like I'm just getting older, or I should just get past it, or it's just xyz which makes no sense in regard to my symptoms, something like that. It never fails!

On the plus side, I've lost about 9 pounds since I saw him almost three weeks ago. He was very skeptical about sending me a check-in e-mail once a month as I asked him, to make me lose weight (I respond to the threat of someone officially checking up on me!). I didn't think it would be that hard for someone to make a reminder pop up on their calendar and send a one-line e-mail, but it doesn't seem like anyone wants to go out on that limb, despite the health plan's heavy advertising about being healthy, losing weight, and suchlike. He did say he'd send me an e-mail in a month but didn't embrace my plan to lose weight--anything that's outside their "box" is suspect or silly. It's not possible, of course, that I KNOW MYSELF at age 50 and know what will work for me....

I'm just griping aimlessly here... what really makes me unhappy, too, is that with three insurances to choose from, not one covers the hearing help that I want (a bone-anchored hearing device) even though MANY other insurances do. And the fact that there was no way for me to find this out for sure until I actually signed up for the plan, although the ENT office made me think I COULD get it when I called them. Bait and switch.

Well, I can't let myself be too disappointed about anything. Because I have come to always expect the rejection, the twisting of my words and requests, the brush-off, the lack of caring.

On the other hand, the internist's office keeps bugging me to come get follow-up bloodwork even though I told them I've switched to a new insurance. And the gynecologist sent me a confusing note about getting a repeat pap or colposcopy, I couldn't tell when she meant--six months from my last visit in June, or six months from now? Anyway who cares--if you don't have HPV you don't have cervical cancer, and anyway what is the point of cancer screenings when you get old enough, every day you see stories about assisted-living places no longer accepting Medicaid, the huge burden that we baby boomers will place on the economy with our health-care costs, the aging population, etc.; what is this imperative to live long lives? I don't believe in it. I don't ever want to be 84 and have someone saying, as they did of my aunt, "Looks like it's time to get Nancy a lift chair." Nor do I ever want to be that 90-year-old woman sitting in a gown beside an MRI machine that I saw in the paper. I'm in favor of nature taking its course. Human beings have no need to extend their lives as far as possible.

YMMV! (Your mileage may vary, i.e., you may have a different opinion!)

Nancy T.
I totally understand you indifference toward doctors - after their indifference toward you.

BTDT (been there done that, wore out the T shirt).

I got to the point that when I finally found docs who listened, believed, tried to help, I cried real tears all the way home - was it all a dream? Was I gonna wake up and then have the real appt of disappointment? hmmm.

And after all that, I will not read the erroneous scribblings about me - what do I care? I treat all that like those sorry movie reviews, as if I were an arrogant actor. It's what the fans think, not the critics, It's what the tests say, not the idiot docs who think it's all in my head and I'm some desperate housewife.

I was never that girl.

Either you want to be my doc and help me or you can get out of the way. Next?

And I agree - quality, not quantity. My great gran lived to be 94. A good 94, and died in her sleep. She was a fiest old broad in every sense. If I could do as well, that would be fine. But 50 more years like me? Um, no thanks.
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Old 02-14-2008, 08:17 AM #13
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Originally Posted by Debbie D View Post
Well, there's a lot of venting today...sorry that all of us are having such a difficult time with the medical profession. It is a very frustrating position to be in, when you are perceived as a hypochondriac, when all you desire is an answer to what the heck is going on with your body.

Sometimes I just totally ignore what's going on health-wise with my body, because I am tired of not getting a definitive answer about it. And maybe there isn't one...some of my sxs can be tossed into the fibro trashcan, but some don't belong there.

And trying to get a dr. to address various sxs is frustrating at best, which you all can understand.

I was in tears in my DH's arms Monday, so sad that I am unwell, and not desiring this type of life.
Last weekend, I experienced so much pain. Friday, I decided to walk on the track at my health club. I walked 2 miles in 28 min., which is not far off what I used to do before my neuro sxs cropped up. That night we took my MIL to the ER for dehydration problems and were there for 4 hrs.
The next morning, I could hardly walk, I was in so much pain, esp from the waist down. It continued on Sunday, and finally went away by Sunday night.
I have been having choking/aspiration problems the last few weeks (see another post), and fatigue has hit me hard several days over the last 2 wks.
It could have been a fibro attack, or it could have been neuro. problems. Who knows?
My DH and I are going to Hawaii in four weeks. I get so nervous that something is going to go wrong. Last year, when we were there, I got a severe case of vertigo and then balance problems, after being in the sun too much. I don't want to ruin our trip, so I am scared...I know it's a nice problem to have, worrying about a trip to Hawaii. But you all understand. With neuro problems, one never knows what's going to happen.
I hope that all of you will be able to get some answers. Don't you wish that you could go to a web site, put your fingertip on a pad, and be able to get answers to all that ails you? Dream on, I know
Take care, everyone, and have a great week.
Hawaii - I never really wanted to go, but right about now that sounds like Heaven!

I hope you have an amazing time!



What the docs do not get is that all we want is to get back to our lives. We all have better things to do than look at their mugs. and better things to spend our money on than meds, tests and their boats.

We really are still living in the dark ages where diagnostics are concerned. What I would do, if I were Bill Gates rich, is set up a clinic where NO one goes home without an answer. How cool would that be?

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Old 02-14-2008, 08:33 AM #14
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MomX7 - glad you finally got to the eye doc. I guess he should know, but I never heard that before, more than one kind of ON.



I hope you get more info on that so you can share and we all can learn a thing or two.

I also hope he can help you out with that - eyes are one of the most important things, I hate to think of you dealing with that. How are all those munchkins? Better I hope?

Sarah - most of the 1,000's of people I've*met* on these forums - like you - are pretty good at saying their sx, tests and results etc and comparing with others. and you get a real good idea of if one disorded fits you or not, or if somebody else fits your disorder.

Docs may not get that, but we know how it works. It's the only way I can tell where my sx are coming from, and what is not coming from my neck. The sx are so much alike form so many things.

It's so frustrating when YOU know and the docs will not listen. Hey, if they are right, then why do none of them agree? Which one is right? That's WHY we have to figure it out.

They told me I have ms, then no I don't yes I do, no I don't yes I do... I hate it. They act like I am the crazy one, where did I get the idea I have ms... maybe from them telling me I do? LOL. Why can't they make up their minds, tell me what it IS and stick with that?
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Old 02-14-2008, 08:47 AM #15
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thanks Brain, I am having a awful morning of sxs....snowing pretty out there..but the humidity kills me....

I do have a new pcp, that seems to listen like my last pcp that I LOVED>..and miss, she moved away....but this one too listens...and think she believes me persay..hehehee

anyhow, gotta run get ready for the day..hugsss,sarah
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Old 02-14-2008, 01:44 PM #16
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Oh man, I just remember the eye is closed on Thursday so I guess I want be hearing from them today. I hate waiting SO much.
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Old 02-15-2008, 03:07 AM #17
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Quote:
Originally Posted by braingonebad View Post
BTDT (been there done that, wore out the T shirt).
.....
And after all that, I will not read the erroneous scribblings about me - what do I care? I treat all that like those sorry movie reviews, as if I were an arrogant actor. It's what the fans think, not the critics, It's what the tests say, not the idiot docs who think it's all in my head and I'm some desperate housewife.

I was never that girl.

Either you want to be my doc and help me or you can get out of the way. Next?
BGB, I really, REALLY like the way you think! And the way you write!

Thanks for the commiseration and the good example!

I LOVE the "sorry movie reviews" comparison!!

Nancy
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Old 02-15-2008, 03:47 AM #18
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Default I feel for all of you in limboland...

Hi everyone...

I just want to say that I feel for all of you in limboland....

After reading some of your experiences, I can feel your pain (and disgust) at what some of you have been put thru for years....and I've heard similar stories of people who have thru that only to have gone from possible to probable to confirmed MS dx.

I am not sure if I should be thankful that my MS came with a bright neon flashing sign that said "MS here: Vacancy" (I guess the big black holes left lots of room for visitors?!) - I never had problems until December 22....and of course with the holidays and all...didn't make it to a doctor until Jan 2 (at which point I went to see a dental specialist b/c I was certain it was my TMJ acting up - as the right side of my face was numb) - and he said go to a neuro...so on Jan 4 I went to neuro, who immediately sent me for an MRI...it was a Fri - and when I left his office to go get the MRI - I told him if he left for the weekend without calling me to let me know what was going on, I'd hunt him down...well, I'm not sure if I regret telling him that or not...because when he called on that Friday afternoon to say, "You have MS" - it kinda blew me out of the water. I had no idea. I thought I had a pinched nerve in my face! My life has been pretty intense for the last 6 weeks - sheesh, I can't believe it's only been 6 weeks my life has been pretty rotten.

Part of me wishes I was in limbo land - b/c then I could just be in the pain I'm in (pretty bad exacerbation right now) - but with my head in the sand and not having to deal with treatment, etc. Switching from copaxone to tysabri right now.

Anyhow - point of this was to wish you luck - b/c I personally believe in importance of treatment....so I wish you all well...


~Keri
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Old 02-15-2008, 08:45 AM #19
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Nancy T, I would be so fried if I were you, particularily about the insurance and hearing device surgery.

You might not want to talk about the procedure, or the type of hearing loss, but if you're up to it, could you post a link?

To know there is something tangible, something that works, something almost within reach that is not subject to the maybes and I don't think sos of medical subjectivity, and to then have it snatched away....



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Old 02-15-2008, 12:19 PM #20
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Default Might Have An Answer!!

Hey folks, a WARM and melting-snow-SPRING LIKE kind of welcome!!!

I saw my "other neuro" yesterday. THe one who I saw incase I was having seizures. He's a sleep specialist and conducted a sleep study with me.

I DO Have sleep apnea and my oxygen levels keep dropping all night. i am going back to have a 2nd study to determine what level of Cpap? I need.

He thinks this may be the source of why I have so many problems, incuding uncontrolled BP/HR. and get this NARCOPLESY with catyplexy or sleep paralysis.

I dont have the typical drop down kind of narcorlepsy but have sudden weakness, "altered consciousness" where it looks like I am unconscious or going "out" gradually. I then cannot comprenhend cognitively and eventually cannot move my body or talk at all !! I lOOK unconscious. THis had ended in several ER visits over 10 years and many inpt stays. I present like a TIA as one side is weaker or I cannot walk, as I loose my balance.

An MS MIMIC? hmmm.. no one knows. AND its not completely ruled out. Told him I still have buzzing tho my balance and cog problems have improved with nutrition.

Any way it will be nice in a month or so, to finally get enough oxygen while I am sleeping!! And not to be so tired during the day.

MANY MANY have sleep apnea and it goes untreated.

OH, he thinks my head shaking while I sleep (it wakes me up) is essential tremors, not related to this apnea/narcolepsy.

OH well, still have neuro problems,but not as bad as before.

Again the nutrition for the brain ALONG with detoxing toxins have really helped me neuro problems.

THought I would share all this... ya never know.

So much for the fibro DX. I really dont think the Lyrica helps with pain and it makes me sleep in a paralyzed way. I sitll take the baclofen that helps my spasticity.

Stay tuned... MISS and LOVE you all !! I am on your side

Jan
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