Well, my big problem with this was that I felt like this was my big shot at getting into a prestigious clinic and I wasn't going to squander the chance.

I was totally prepared. I had a timeline of sx, I had an organized notebook of all of my test results so that it wouldn't waste his time and my time.

You know what that got me? This fancy doctor at the mighty Cleveland Clinic looks at me and tells me that all of my preparation is just evidence that I am too focused on this and I'm making too big of a deal of it. At the time, I couldn't walk down the hall without a cane, but I was apparently making too big a deal of that and I should just forget about it.

Then, to top it all off, after he tells me all of that and destroys me, he writes in his report to my docs that MS is a reasonable consideration in my case and actually pointed out two lesions on my MRI that were never reported near one ventricle, but then goes on to say that since my MRI didn't change in 2 years, that MS is really actually unlikely.:confused::confused:

People who are dx'd and don't have a change in their MRI are told that is good, but for the rest of us, it is proof that we don't have MS??

Now, due to this experience, I am beyond afraid to push for answers. I'm afraid of looking like I am too focused again and I'm afraid of losing my present specialist who is at least managing my sx. This one doctor actually affected me that much.

Holly,

In my personal opinion -

Fancy doctor or prestigious clinic it doesn't matter, any doctor that makes you feel that way has no business being a doctor.

Sometimes the best referral you can get come from the patients themselves. There are doctors who are thought highly of but many times it's there peers who think highly of them. If you speak to some of their patients you could get a completely different opinion.

I think you need to get back to the diagnostic process :hug:

There is so much technical information here--I'll have to wait until I'm having a good brain day and really study it. Just what I picked up skimming through has been VERY helpful and interesting!

One thing that jumped off the screen at me was the idea of neurologists who are married to the concept that MS is an MRI disease. Such is the case with my neuro. At one appointment he said to me, "You don't have enough lesions to have the degree of fatigue you describe."

I picked up my pen and paper, looked him directly in the eye, and asked, "Are you saying then, that there is a direct correlation between the number of lesions and the severity of symptoms, specifically the symptom of fatigue?"

He nodded his head and said, "Yes, yes, you don't have enough lesions."

What a relief to know I'm not as tired as I think I am! I think I'll go run around the lake a few times before breakfast!

WTH?? :eek:

I swear, some of them try to make this far more confusing then it has to be, and give us no credit what-so-ever. "Mr Neuro . . . are you insecure about your job security or something?"

I have the best specialist. I asked her the last time if she ever does information sessions, and she said she used to, but hasn't this past year. She said "maybe I will start them up again . . . great idea!!". I told her I had some questions about the disease process, and she said she would be more then happy to answer anything . . . and she KNOWS her stuff. I always ask her and her nurses hard questions, one's where the answers might not be what most of us would wat to hear :cool: She is ALWAYS up-front and honest, even if the news isn't good.

Cherie

It is this kind of statement that lets me know someone is in the presence of a truly mediocre intellect! One of my articles down the line will be titled, "Lies My Neurologist Told Me." We have had neuro's say that you can't diagnose MS with a negative LP, a negative VEP, or over the age of 45. We have had multiple neuros state that there is no pain associated with MS. I think I know the study that they got this information from and all I can say is that they are dimwits.

I have heard neuros state that in the presence of depression you should suspect that it is not MS, but instead an affective disorder!!! OMG! Depression is a Primary and Direct effect of MS. In fact, many MS Specialist are saying that the presence of a major depressive episode in the two years prior to the "onset of symptoms" should be considered as a clearcut clinical attack!

I could go ON-AND-ON here, but enough. I'm getting all worked up.

I hope you'er planning to ditch this moron.

Quix:winky:

Cherie and all: About talking to patients. I am a believer in attending MS support groups and asking people directly what they think of the neuros around. You will get very pointed and candid opinions about who the stinkers are and who is smart, a good listener and compassionate. I'm even willing to forgo compassionate if I have a smart, good listener with the intent to treat me the best he knows how.

Quix

I read somewhere that patients who pull out a list of symptoms are more likely to be considered hypochondriacs, to suffer from what the French call "la maladie du petit papier": the illness of the little paper.

OK, here is BIGGEST THING that made my head explode during those years when I was still talking to doctors about my symptoms:

THE CONTRADICTIONS!!!

Such as, your being told that you're too anxious--when you can't walk down the hall without a cane.

Such as, your being told that MS is a reasonable consideration--but your problem is that you're just anxious.

Such as, "no change in lesions" is GOOD if you've already been diagnosed with MS, but "no change in lesions" means you don't have MS.

In my case, it was "it could be MS" but "I don't need to see you again" (even though I read everywhere that "early diagnosis and treatment are essential").

And "You should consider getting a spinal tap." "No spinal tap!" "We'll definitely do a spinal tap." "I don't think you need a spinal tap."

And "Ritalin is a controlled substance! There are no refills!" A month later, he writes a new prescription with a refill, which of course the pharmacy won't do. Next time, he writes 3 refills of Ritalin and hands me the Rx. I say, "The pharmacy won't do refills." He says, "They should!" Now how am I supposed to believe ANYTHING this guy says when he tells lies about Ritalin because he wants to get rid of me?

That's only a small sample of the UNEXPLAINED, UNRESOLVED, and worst of all UNACKNOWLEDGED contradictions I've been subject to. If they would just explain themselves.

BUT YOU CAN'T ASK QUESTIONS--you know why? Of course you know why.

Because asking questions MAKES YOU SOUND ANXIOUS!!

And what do we do with anxious patients? We attribute their symptoms to anxiety. We don't take them seriously. We are impatient and dismissive with them, instead of investing five minutes to explain our thinking and thus prevent the patient's head from exploding.

Do these doctors have the SLIGHTEST idea how much depression and stress they cause their patients?

They think they're doing us a big favor by telling us we are just anxious, that we just need to relax. They want us to not stress out. So why do they say things like that, treat us like annoying children, without it ever occurring to them that this just causes us EXTREME stress and depression, making psychologically UNBEARABLE a situation that otherwise we could deal with appropriately?

I've said it before... I had severe iatrogenic depression for a long time. Thankfully I'm over it. But I'm still angry about it. It is so UNNECESSARY to put a patient in that position by making all those ridiculous contradictions, and making the patient feel that they are

NOT ALLOWED TO TALK TO THEIR DOCTOR.

It astounds me that so many doctors talk out of both sides of their mouth. They might acknowledge real symptoms or real abnormalities on tests. Yet AT THE SAME TIME, they treat the patient as if they are not a legitimate patient SIMPLY BECAUSE they think the patient is "too anxious."

I have a feeling that if I broke an arm (or an appendage dropped off--see Quix's inspired "For your amusement" thread), I'd go in to the doctor and they'd say, "Yup, your arm's broken all right, but you're still a hypochondriac." In other words, NEVER A LEGITIMATE PATIENT, no matter what is really wrong with you or what happens to you in the future. And never mind that you've had NO history of hypochondria and NEVER saw doctors until age 42 when you lost your hearing and got so much dizzier you had to change jobs.

You have the big scarlet "H" emblazoned on you, and it will follow you all the days of your life. And there is nothing you can do or say to get a doctor to see past it.

I'm getting along great with my new PCP. Know why? Because I didn't bring him any of my records (except recent blood work for cholesterol, etc.) and haven't told him any of my symptoms! Except the ones that I want something done about (referral for a hearing-device surgery, referral to PT for a specific walking problem). He has no idea that I was ever (partially) worked up for MS, no idea about most of my symptoms, and I'm not going to tell him. I don't need HIM to get that familiar little smirky, self-satisfied smile that means "Aha, so THAT's the deal with her!" I don't need HIM to make my head explode again. So I keep my mouth shut the best I can.

Nancy T. :mad::mad::mad:
Sorry for that major rant, which I've done too many times.

And then there's the neurologist on an ask-the-doctor MS forum who repeatedly states categorically that if your MRI does not show MS, you do not have MS. Period. It's apparently that simple for him.

As for the ones who say you're "too old" for MS, even the brand-new family practice doctor that I once had (I think I was literally her very first patient in the practice, at 9:00 early one September morning) replied, when I said jokingly "At least I'm too old to have MS!" (because I'd read a Web site about MS, crossed it off my list of differential diagnosis of hearing loss and dizziness, and truly believed you coudln't get it after age 40), "You're never too old to have MS."

She, a family practice doctor who otherwise proved herself slightly air-headed and rather unreliable, knew that you're never too old to have MS, when some NEUROLOGISTS don't even know it.

Frankly, I suspect that many of these neuros know better on these issues--but they spout such things just to shut their patients up. I'm SURE that one of my neuros was saying things, changing his story, tailoring the truth, just to steer me and the appointment in the direction he wanted it to go. He did it very skillfully.

(I am not really a doctor-basher--I believe most of them are competent and well-meaning, and I've seen a few really good doctors and gotten a lot of help from some of them, including the one I just mentioned--but I JUST DON'T UNDERSTAND or accept it when they do things based on false assumptions that they won't question, or when they are careless about a patient's mental and physical well-being by brushing them off inappropriately and leaving them with all these unresolved contradictions.)

Nancy T.

The only doctor I trust currently is my regular doctor. He's the one who kept investigating things for me when I asked. He's the one who ordered an MRI of my spine to look for a slipped disc (found one!) and also decided to give me contrast while I was in the machine to look for lesions on my spine (found two!)

I trust him more than I trust the neuro...and I really like my neuro, I just think that my regular doctor has more of an open mind.

Isn't it amazing that Neurologists, in one of the fastest growing fields (with regard to knowledge) are so often the most close-minded. Personally, and speaking from a position that knows the type, I believe these doctors have lost touch with what is being discovered. They cover their arses by attacking the patient.

For those that wonder, here is a link to my story:

Quix