how they are taught to think or????
 

Hello all, I am sure more than a few of you notice the constant comments about not being DX'ed MS, and the constant struggle to get DX'ed. On a thread someone brought up a good thought and I did not want to hijack the thread. Is it the way they are trained?

Is it the way Nueros are trained in nuero science? Parkinson's Alzheimer Epilepsy are so much more thought about and taught about, than MS is?

Or is it the lack of definite answers, treatments, maybe the fact each of us, it effects differently as so do the meds prescribed. Do the docs inadvertently have a seated view or opinion of MS, such as it is a pain to deal with and thus it is displaced in their practice of medicine?

Now I am not trying to assume this only happens with MS, which I am sure it doesn't, it does seem, however to be more common with MS

Could it simply be that there is no single definitive test for MS and it tends to be a subjective diagnosis rather than objective? Just an off the cuff observation.

I'm wondering if some of the neuros see another side that we don't? I know a few people personally, even way up here in the sticks, who think they MUST have MS. I know these people, and what they actually have is every disease they've ever heard about or seen on Discovery Health.

I wonder if some neuros are even more cautious to diagnose MS because they DO see that person whose finger falls asleep, googles a few sites (like wwwquacks-r-us.com) and marches into the office determined to have the disease of the week.

I have three bona fide hypochondriac friends/relatives who have all been to MY NEURO. I wonder how many more he sees? And it doesn't help the rest of us.

Hi Frank:).
I agree with Cheryl and B2Y. I also think that doctors may be hesitant to dx until there is some sort of definitive proof such as lesions in the proper places, positive lp, etc. because the treatments are sometimes so brutal. It's not the same as a doctor prescribing an antibiotic 'just in case' you have an infection and it wil possibly cure whatever is wrong.

Since MS is incurable, hard to diagnose and treat, (and as B2Y said, there are a few :cool: hypochondriacs 'diagnosis surfing') it's really no wonder to me why people aren't being dx'ed. JMHO. I just wish some brilliant researcher would find a defintive test so that people could really get the answers they need. BTW, I went for many, many years without a diagnosis so I understand what some folks are going through :).

I've been told that other things were in my head too as a kid. But behold the magic age of 18 and they came up with other answers to my problems that turned out to be right. :rolleyes:

From my MRI and the tremors at the time, my PCP believed MS from the beginning. I lucked out with a strong advocate in him. He encouraged me to find my current neuro (2nd opinon) to get the help I needed.

that was the reason (excuse?) given by the Neuro's nurse (his wife) in rural small-town California, for WHY the Doc (hereinafter referred to as Dr. Idjit) couldn't/didn't diagnose me for 3 years.

the nurse said that Dr. Idjit didn't LIKE to diagnose MS, as it was untreatable, incurable, and basically hopeless (back in 1989-1992) before the interferons and Copaxone, and other advances.

I believe it was a combination of things, he knew little about MS (Idjit specialized in strokes, more common in a retirement area), so the MS wasn't as *obvious* to him, despite my having CLASSIC symptoms like the MS Hug (which he mistook for Guilllan Barre' and was ready to admit me to a hospital for the impending paralysis, fer heaven's sakes!)

also, it being a rural mosquito-ridden area, he was sure (for a year) that it was Lyme, and tested me repeatedly.

but (soapbox time kiddies, beware!) I believe the BIGGEST reason Dr. Idjit refused to order an MRI (besides the fact that he was a Libertarian-a$$munch-type who felt that Medicaid shouldn't have to PAY for my hypochondriacal diagnosis-seeking neurosis) was.......... I think......

that he was an arrogant MALE, who was majorly ticked OFF that I knew more about MS than he did (only confirming his hypochondria theory), and thus REFUSED to see the leg weakness, numbness, past history of Optic Neuritis, bladder incontinence issues, and blurry vision that I described.

at one (LOW) point, he actually TOLD me to get counseling, and that it was all in my head, and being CAUSED by my reading and research (at the library, there was no internet in my area back then...)

now, I have had MS for 20 years (Feb. 88 was the ON first flare) and second opinions, and a dozen MRIs, and been to Stanford Neuro Clinic, and seen MS Specialists (had to travel a bit), which confirmed the MS diagnosis, FINALLY, in 1992.

so, I really FEEL for those stuck in LimboLand, and understand their difficulties.

but you're RIGHT Frank, it isn't any ONE thing, it's a whole HOST of issues, AND the differing patterns, symptoms, presentations, PLUS reluctance to diagnose such a serious permanent illness (who wants to give such possibly bad news?)

complicated by, (as B2Y so astutely observed) the hypochondriacs who do NOT help those of us with weird symptoms !!

Great post CayoKay. You covered off a lot of the reasons, and I think it is especially important to get a 2nd opinion in case the dx delay is mostly related to doctor bias.

My questions are:

1. What would others consider a "reasonable" timeframe in which to expect a confirmed dx of MS?

2. What should the min dx requirements be, if what we have to work with is not adequate?

In retrospect, many of us can probably go back several years and see some "possible/probable" symptoms of MS . . . but chances the pieces of the puzzle couldn't have come together for a dx at that particular time anyway.

So, how long did most of us (that currently have the dx) live in "true" limbo with this disease, once it became abundantly obvious that something serious and ongoing was wrong with our health?

I know a large % of the people are dx relatively quickly (0 - 6 months), but the definition of "quickly" is probably subjective too.

Cherie

there's no one good answer, Cherie.

it has more to do with type of medical insurance, coverage, and location.

a diagnosis is much more likely in larger cities with the latest equipment and doctors with more experience.

and not so good for those who are in rural areas, are minorities, low income, lacking good insurance, or having no insurance at all...

also, I suspect doctor's familiarity with MS increases from San Francisco's latitude, northwards to Seattle's, due to the odd dispersal of MS cases...

so, just like MS varies widely, so does the care one receives in diagnosis.

1. As long as it takes to get the correct diagnosis
2. Whatever it takes to get the correct diagnosis

I think it would totally suck to spend weeks, months, even years being treated for the wrong illness. And, potentially it could be life threatening. I was diagnosed with leukemia a couple days before Christmas when I was 16. Due to the holidays treatment was delayed, thankfully. A couple days after New Years we were told the diagnosis was an error - I had mono! So even though I've have a firm MS diagnosis for years, I still pester my neuro and PCP for other tests because I'm always going to be skeptical - I guess I'm in self imposed limbo.

Good points, Cayokay. I wouldn't have thought of that as health care availability (for such a serious condition) would not be a financial obstacle for people here.

So, would that be "true" limbo, or . . . .

Self-induced (sometimes by necessity) limbo?, or . . .

Unavoidable limbo?

It doesn't sound like that could be blamed on the doctors, per se' . . . :confused:

It does bring up a good suggestion though . . . 2nd opinions (for those who have insurance and money) should be sought from an up-to-date facility and experienced health care provider.

Cherie

I would agree with that!

A friend of mine was dx with HIV, and he very seriously contemplated suicide over the weekend. Just the thought of having to tell all his partners was too much for him to bear.

Wrong "John Smith" . . . :eek: They called him on Monday, and he didn't even have it. :)

Cherie

oh, I just *looked*

you're in Canada, gotcha !

I think some of the biggest obstacles for proper diagnosis and care are laid in the paths of people *above* the poverty line in the US...

those stuck in the gray area of lower middle class, working single moms, with jobs and/or child support $ that doesn't allow them to qualify for Medicaid, (US gov't-paid medical care for low income people)

many must either borrow money, or do without to scrabble together the funds for doctor visits and tests

:sigh:

thank you everyone, its something i have wondered for a long time, reading all the limbos post and those knowing deep in their heart what it is. I too spent a number of years(7) being miss DX'ed. it was just an odd chance I had a severe headache when I went in that time back in 06, they had to look deeper, I never got headaches, am pretty sure if i did not have that headache they would of patted me on the back sent me home and told me to see a shrink like they were starting to do prior to that 2006 visit. I know the SX's are so similar to other issues and can relate to the docs in those cases, it just seems docs are reluctant at times. thanks folks for your ideas.

I think a lot of Nueros think they are God, and when they realize that only the real God can cure MS, they close their minds to us. Those kind also resent the fact that we educate ourselves and that we don't buy the usual BS they spew..:rolleyes:

I only have a "probable" dx but my neuro says I have MS 100% - but since my insurance company says you have to have to meet certain criteria to pay then my neuro only has an option of saying "probable".

I personally don't think it is fair how the insurance companies work..... I have a certified Neuro that says yes, she has MS but and insurance company that says your neuro exam and her sx are not enough for us, sorry!

I have gone through almost 2 years of testing to rule everything else out that may be causing my sx - and the two small lesions that I have on my neck are not large enough to be called MS.

What am I - am I in limbo? I can't answer it.... the insurance company says there is nothing wrong with me, my neuro says you have MS, I know there is something wrong cause my body certainly isn't right or what it was 2 years ago.......

that is my rant....

Perhaps a letter from your Neuro to your Ins. Co. would help. That would make your DX official and I wouldn't think your Insurance could refuse to cover you.:hug:

This is what bugs me. Since when are insurance companies in the business of being doctors and diagnosing patients? I thought that was the job of people who are "M.D." s. I pay a heck of a lot of money each time I visit my doctor for his/her education, not that $7/hour insurance claims processor. :(

I know I have, in the past, asked my insurance claims processor more than once where s/he got their medical degree. :eek::p

But, they're THE Insurance Company! They know more than those silly doctors!

Brain surgery? Surgery smurgery...you dont need that! Here! Have some lipstick (which will be charged to your insurance)

That large, broken femur bone doesnt need to be treated...you just need some lipstick! (to be charged to your insurance!)

Please note, I'm in a weird mood tonight, and most of what I may be typing tonight will probably be full of snarky comments...none of which are aimed at anyone here, but probably towards doctors and insurance companies, and receptionists at the Urgent Care who got all pissy because I called them 5 minutes before they were to close up shop. (it's not like I was going to show up on their doorstep 2seconds later...I just needed to ask a non-emergency medical question and didnt want to tick off my real doctor by waking him up at 1am)