Limbo check in 2/13
 

Hi friends and neighbors!

Well, we got another layer of snow here in llama land lol. I felt that one coming in. DD didn't go in to work yesterday with the roads all slippy like that.

Good, she's a new driver in a big ol' car. Her boss has seen the way she parks the Queen Mary on a good day, guess she didn't want her to take out the front of the take out.

:D

My car isn't good at all in snow, but then neither am I. I was on the couch all day. I'd have what for just walking out to clean the windshield, so it wouldn't mater what I had to drive.

But hey, at least it's sunny today, supposed to be warmer tomorrow. Feb is the worst of it. After that it's all gravy.

Well I see the eye Dr this afternoon, I'll post how that goes when I get back home.

I've been over at one of the fibro boards and most think my SX look more like lyme or MS than fibro, just like I thought.

I'm really POed at my neuro, turns out he did not test my CSF for all it should have been tested for OR he still has the other page/s of the report and is not telling me he has them. Plus the fact that he didn't draw blood at the same time.

Good Morning!

We woke up to another beautiful sunny day so will get out and enjoy it as we have high winds coming all day tomorrow.

I am doing very well and I don't need to see my Neuro for another year just for follow-up. I may not even do that.

I have a diagnosis of CIS. All the symptoms of MS but clear spinal fluid (7 LPS!!) so no one can dx me with MS which is fine really. Everything else has been ruled out and I have been tested for everything for the past nine years.

I am not on any drugs other than Lasik for water retention. I take that in the morning and I know every restroom in town!! I plan my errands around places with clean restrooms.

I have got to make an appointment to get our taxes done which we are in no hurry to do. Being retired and no deductions we always have to pay. Now that I don't have all the medical deductions for all those repeated tests which showed nothing; we don't have the medical deductions but worth it to be off drugs and feeling better.

Friends and family back in the Midwest are really having a terrible Winter with way more snow than usual which means flooding in our little town we lived in.

Seems like February is the longest month of the year because we were all so anxious for Spring!!

Sending warm hugs from Arizona!:grouphug:

Good luck at the drs.

I hung out on a fibro board too when I was dx'd with that. And told them my hx, sx, etc. They (the fibro people) told me pretty much the same thing, that what I was saying really did not fit what they felt, what they lived with.

Not that I really feel too ms-y. It's weird for me, cuz I have the other stuff going on though. Hard to be sure what comes from where. Hard to keep track of the sx vs. disorders.

I finally told my neuro, maybe it's not ms, maybe just the neck and sm. But let's say it's NOT fibro. I'd rather be in denial on that one. He's cool with that if I am. And I am.

And the pain doc is cool with that too - he says if we can't trace some of the sx to my neck, they are quite likely from the syrinx. I'm glad he is open to that idea, because I was going crazy getting anyone to believe that thing was giving me trouble.

It was like having a ghost in the house - I know it's there, I know it's doing stuff. But bring it up and people think I'm crazy.

:p

And you're right about the LP and the bloodwork. It should have been done at the same time. It is not done , always, though. I think the docs think the LP should show enough to dx or there won't be any need for the bloodwork. and that's not the way to think. If it was their wife in limbo, they'd be more thorough. Or if it were them.

;)

My hope is someday they'll know why all this happened to each of us. There must be 1,000 of reasons brains get lesions, they just don't know why.

And still the *search* feature turns up MS first every time, and the docs tell us they think that's what we have and makes us crazy, wastes our money on a gajillion tests, then tells us we are crazy and we don't have ms!

:confused:



oh well...

:p

Yeah, we're at flood stage here too. Our itty bitty river it only a few feet from the arch in the bridge, looks like Willy Wonka's river of chocolate.

I have a PCP appt tomorrow and have to brave the cold soon to get my hip x rayed for the pain guy - I go back next week for my facet joint injections.

:eek:

I'd gop see the neuro. Just to touch base, you know?

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.

Excellent analogy, BGB! Perfect.

And excellent observation (so true, so very true).

Nancy T.

Well, there's a lot of venting today...sorry that all of us are having such a difficult time with the medical profession:grouphug:. 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:rolleyes:
Take care, everyone, and have a great week.

Well I'm back from the eye Dr. Guess what I don't have a DX of anything, well not yet. I HAD to leave to get the kids from school and he (eye Dr.) didn't have time to look over the printout yet and he wanted to call my neuro and talk with him :rolleyes: He said he would call me and let me know what he thinks. He said there was no surface swelling of the vessels but there was differently swelling of the other vessels in the eye (back behind the eye or something). I have loss of vision near the pupil and most of the top/inside and inside area (near my nose). 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.

Hey, sounds familiar..some of you ...cause I back in 2005..after seeing a neuro after baby..and feeling so awful....the neuro said fibro..without any reasoning to it...but I went with it..s.aid ok cool.....

started going to a fibro board...to learn..and on the board..they kept saying..YOU NEED TO SEE A NEURO NOT A RHEUMY>>>hmmmm lol...

eventually stopped going there...plus then my pcp...saw me...I asked her should I see a rheumy..she said for what...I said the neuro said fibro..she said nope not in his report....(thinking he just knew I didtn want to leave without answers) cause then she did pressure point checks..and I was good..she said SARAH this isnt Fibro it is neurological....

then I always joke with the reg drs, or PT dr...or all these side drs that say neurological.....I joke will someone tell the neuros this...casue every neuro I see says nope not neuroligcal...anxiety or stress..or it is something that happens to woman after babies...lol...sarah

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.

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.

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?

:cool:

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.

:confused:

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?

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:D

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. :thud:

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

I feel for all of you in limboland...
 

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[/SIZE][/COLOR]

Eating my words (most of them)
 

Hell has officially frozen over! Nancy T. has found a GOOD DOC!!!!! :eek:

Yes, this fresh young whippersnapper of a family practice doc is going to be my doctor forever! (I hope.) I was right--the very new doctors are still actually paying attention to their patients!

Not only did he ask me more questions at my appointment today--and examine me, which hasn't been done for MANY years--I left the office with a referral for ENT, PT, follow-up bloodwork (for cholesterol/meds), and the little stool-testing cards and sigmoidoscopy order (the last two are yuck, but at least this doctor noticed that I'm past 50--my internist was not on the ball about ANYTHING except the BP and cholesterol). They checked up on EVERYTHING!!

When I told him about the walking problems, he tested the range of motion in my hips and knees (NO doctor EVER did this--not even the rheumatologist to whom I complained about this) and gave me a PT referral--WOW!!! Maybe, after 7 years, someone will finally TRY to figure it out, instead of saying "you're just deconditioned" or "bursitis", neither of which made sense, but they weren't listening...

This guy is so bright, nice, efficient (types everything into the computer right there in the room--Kaiser really has its act together, I'm VERY impressed with their whole system), and is seriously addressing all my concerns and requests. With nary a hint of smirk, not a hint that he knows what's going on with me before I open my mouth (like previous doctors). Straightforward and helpful, like a real doctor!!

Is this possible?? I had given up thinking so, after going through five PCPs in nine years, all of whom were either totally uninterested (1), arrogantly presumptuous (1), had blinders on (2), couldn't be reached or relied upon (2), didn't talk to me or let me talk because they thought I was a hypochondriac (3), and one who was a semi-airhead.

Right now I could even believe in the Tooth Fairy, the Easter Bunny, and a balanced federal budget! :D Well... the first two, anyway.

Tante: Actually I do not blame the ENT department for leaving me with the impression that the BAHA (bone-anchored hearing aid) would likely be covered--I was just trying to feel them out on the phone (since the membership department wouldn't tell me anything), and they had no authority to promise me anything, I knew that. ("Bait and switch" was the wrong term for me to use--it was just the mood I was in when I posted that.) The policy may have changed since I talked to them last year anyway. In any case, I'm seeing the ENT March 11 and will hope to find something out.

The BAHA (bone-anchored hearing aid), developed in Sweden where "hearing aid" is not anathema to insurance companies, is now called things like "bone-anchored implant" or "bone-anchored hearing system". Here's a link to the US manufacturer that bought out (?) Entific, the Swedish developer:
http://www.cochlearamericas.com/Products/2013.asp

My hearing loss is strictly one-sided, being normal up to 500 Hz and then waterfalling down to a 75-110 Hz loss, which is bad enough that I have very poor speech discrimination in that ear and would not be helped by a regular hearing aid. The loss occurred in 1999 when I sneezed hard one day. Cause unknown, but obviously something traumatic happened in my inner ear.

Well, what a day it's been! I feel like I won the lottery!! A huge psychological burden has been lifted, after many horrible years of awful internal churning, the doctors' attitudes literally eating away at my insides. Everything is different--just because someone listened--really listened, and addressed things with me in a straightforward and proper way.

Good luck to everybody, undiagnosed and diagnosed... feel better and good luck with new treatments!

Nancy T.