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!

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.

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

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

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....



tante

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.



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!





oh well...



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.



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

Excellent analogy, BGB! Perfect.

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

Nancy T.