Re: Frustrated with my Dr. and tests!!

[Guest guest]

That's me too..only a high sed rate if it feels like someone hit me 999

times with a bat, but if it feels like 199 times with a bat, normal reslts. Oh

joy!!!! we are all cracked up

Liz NJ

[Guest guest]

,

What your doctor said makes no sense to me at all. If you're on MTX

and Prednisone, I'm guessing your Ferritin levels, white blood cell

count, and c-reactive protein levels would look pretty normal. What

are you supposed to do... go off all of your meds until you're in a

massive flare so he can find bloodwork that makes sense? I don't get

it. Then again, maybe that's what you'll need to do... short term

pain; long term gain.

in Maine

>

> Have anyone of you had tests and every test comes back normal--negative?

[Guest guest]

Hiya - yes, I can identify with you 100%. For years I was

told nothing was wrong and it was all in my head - by many doctors.

Then my SED rate finally showed up abnormal but even then, all they

can say is that without anything else showing up abnormal, then the

SED rate means nothing. Then I finally found an RD that said, well,

the SED rate tells me you are inflammed somewhere and that is why

you are in pain. Nothing else is abornmal on all of your tests, but

the symptoms tell me it's probably Stills disease. And that's what

he treated me for.

Now that I am Houston and trying to get into the doc that I am told

is best, I am nervous that a new RD is going to take back that

diagnosis because none of my tests are abnormal. I am hoping that

based upon my improvement on Kineret and MTX they will continue with

the diagnosis of Stills. But I don't know.

I know it's hard for you to find someone, but I do firmly believe

that your doc has got to believe what you say and move forward in

treatment. I do think it's important for us to have a diagnosis of

something, not just for our own sanity, but also for our files in

case we need to file disability.

he says some form of RA...why does he think that? I wonder why he

doesn't take his thinking a bit further. How long have you seen

this RD?

Houston

[Guest guest]

:

I understand the frustration and the aggravation you are enduring. I went

through about 17 yrs of it. And my current RD has recently told me that my pain

is not in my " head " but it is " percieved " . Go figure. I am on the hunt for a new

specialist because I can't deal with someone who can not understand what I am

enduring despite being a full time student and rebuilding my life.

I live near Hopkins Hospital(about an hour south of it) and I am planning

to ask my PCP for a referral to the doctors up there.

My thoughts and prayers are with you. Let me know if there is anything I can

do.

Tracilyn

[Guest guest]

Hi Tracilyn,

The nerve of some Dr's! My Mother had one--who she had never seen

before--stick his head around the door and say " It's all in your head. Do

you want me to examine you? " She was so upset. She was there looking for

answers for why she was so sick. Several years later she was diagnosed with

Lupus SLE.

I don't understand how a Dr., who is a Rheumy that treats All forms of

Arthritis and other type diseases can say we don't need pain meds. It must

be the fear of law suits and/or working with ins. companies. Because they

know how much pain is involved with these diseases--even if they just go by

text books. The documentation is there. I hope you can find a Dr. who will

treat you better. And please let me know about your experience with

Hopkins once you go.

My thoughts and prayers are with you too and all of us here.

, Oregon

>

>

> :

>

> I live near Hopkins Hospital(about an hour south of it) and I am

> planning to ask my PCP for a referral to the doctors up there.

>

> My thoughts and prayers are with you. Let me know if there is anything I

> can do.

>

> Tracilyn

>

--

SPEEDY :-)

Meds:

MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg

Supporters:

MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit

B-12;

Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential

Minerals, AND cALCIUM 1500 mg

" Love endures all things. "

[Guest guest]

Dear ,

I hear you loud and clear on this one. So many doctors want positive labwork at

all cost and don't understand that Stills is diagnosed by clinical exam.

And come to think of it, there is no straightforward rule for any of these

diseases. For example a high SED rate is only a diagnostic criteria for PMR

(polymyalgia Rheumatica).

But I've had so many doctors blood me off because my SED rate is low, not high.

Who cares? If I feel like crap I'm sick! Do you think this is fun for me,

doctors? Don't you think I would rather have a life (and even maybe a

career???) like most women my age,33.

Then at the same time you can get mad at your own body. How can I be this sick

and " not have anything to show for it? " It's ridiculous. Maybe they are not

running the right tests? You can't help wishing that you had some sort of

bonafide proof that " this is what I have " , no more questions.

I am thinking of moving (if I can ever get SSDI, almost 6 months waiting for

the darn Administrative Law Judge to make a decision!!!!!!), but how will I find

a doctor to treat me if I have NO PROOF of what's wrong? (other than how I feel

on a day to day basis?) It's really frustrating, that's for sure.

FYI- going to a well known hospital/clinic does not guarantee results. I went

to Boston to an expert in vasculitis research (at the time that's what they

thought I had), and it was a complete disaster, he was great at first visit and

then at second visit he tells me it's a complex pain syndrome and to see a

shrink. I cannot even convey to you the frustration and hopelessness that I had

to deal with after this. Then again, some folks I know have been very fortunate

to get answers. Usually the situation has to be that you are in bad enough

condition and that your own doctor doesn't know what to do next. Hopkins

usually wants proof and a referral from your doctor. Mayo Clinic in Rochester

MN was great for one person that I know, and terrible for another (diagnosed her

with something that she didn't have). Same with Cleveland Clinic. It's really

hit or miss with any doctor.

Best wishes,

beth

[Guest guest]

beth,

Have you tried Dr. Kerouac at Portland Rheumatology Associates?

He has been great for me. Sometimes he's a little tough (meaning he

doesn't mince words), but I like that kind of directness.

in Maine

>

>

> FYI- going to a well known hospital/clinic does not guarantee

results. I went to Boston to an expert in vasculitis research (at the

time that's what they thought I had), and it was a complete disaster,

he was great at first visit and then at second visit he tells me it's

a complex pain syndrome and to see a shrink. I cannot even convey to

you the frustration and hopelessness that I had to deal with after

this. Then again, some folks I know have been very fortunate to get

answers. Usually the situation has to be that you are in bad enough

condition and that your own doctor doesn't know what to do next.

Hopkins usually wants proof and a referral from your doctor. Mayo

Clinic in Rochester MN was great for one person that I know, and

terrible for another (diagnosed her with something that she didn't

have). Same with Cleveland Clinic. It's really hit or miss with any

doctor.

>

> Best wishes,

>

> beth

>

>

>

>

[Guest guest]

beth:

You are so very right, that just going to a Well known physician or hospital

does not promise an excellent result or even a positive result for what you are

looking for. Nor does it mean that the doctor will be any more knowledgable.

I just wish that they (doctors) would have training by having to suffer the

same problems as us. It does get to a point that you get frustrated when they

have been your doctor and treating well then all of a sudden they become 180

from where the relationship was to begin with. A year ago, I really liked my

doctor then all of a sudden this last appointment he told me what he did, just

because he finally realized I was on two antidepressants, and one of them is

used for controlling my migraines and the other is truly for treating the

depression. The depression was a direct result of being dx'd and suffering so

many losses (deaths) in such a short time. So in my case I am darned if I am do

and darned if I don't.

Then on the flip side of it all, my PCP has relocated her practice from the

one she was with and not seeing patients until next week. And I had to rely on

the CRNP from the old practice who has not bothered to read my records and

decides to completely change my pain meds from what has been prescribed all

along b/c she feels that " I have a drug problem " and need to get an RD.

So yes I truly understand the frustrations that can come from altered plans of

treatments,doctor-patient relationships, and just trying to get to the bottom of

what ails us at that point in time.

Tracilyn

>

> FYI- going to a well known hospital/clinic does not guarantee

results. I went to Boston to an expert in vasculitis research (at the

time that's what they thought I had), and it was a complete disaster,

he was great at first visit and then at second visit he tells me it's

a complex pain syndrome and to see a shrink.

[Guest guest]

Hi ,(in Maine)

I haven't had any visits with Dr. Kerouac but I do see Dr. Muscat in that

same practice. She has been a godsend for me. She is the one who finally

diagnosed me with Stills, about 2 and a half years after onset.

I had seen another rheumy there initially (not dr. Kerouac, don't worry!) who

shall remain unamed but was a complete idiot. That's OK because once I knew he

wasn't going to help I fired him.

Interestingly, my whole team (GP, rheumy, nephrologist) are all women now. I've

found that they deal better with the " gray area " and not having black and white

answers. Male doctors have a much harder time with that, in my experience.

They like straightforward answers, not medical riddles that don't fit the

textbook (LOL).

I am irritated with not having any proof, but I am very happy with my doctor-

she is doing the best job possible in spite of the fact that we don't have any

proof. For one thing she is treating me, when some other doctors wouldn't. And

this is a huge positive! I just don't know if I could find another doctor like

her if I moved.

Best wishes,

beth

[Guest guest]

" Perceived pain " ? I wonder what the heck your RD meant by that.

Seems to me that all pain, honest to goodness, real, pain

is " perceived " . We all perceive the pain differently, otherwise we

would not have some of us who seem to have a higher tolerance for

pain. I know the pain is there in my index fingers with each letter

I

mash on this keyboard. Just because my synapses are wired

differently

than someone else for who the same level is intolerable does not

make

that person less in pain. Pain is relative to the individual and

not

the group. Like in the standard ER question, " on a scale of 1-10,

what is your pain? " Your 9 may be my 3. It is perceived by us

differently. Your RD's comment almost gives the tone of, " suck it

up, it isn't as bad as you seem to think it is. " Not a very

empathetic comment.

Hang in there.

Tom from PA

PS I like my RD and think she knows what the heck she is doing and

looking out for me and better yet, listens to what I have to say.

>

>

> :

>

And my current RD has recently told me that my pain is not in

my " head " but it is " percieved " . Go figure. I am on the hunt for a

new

specialist because I can't deal with someone who can not understand

what I am enduring despite being a full time student and rebuilding

my

life.

>

>

[Guest guest]

Ah, a little wee bit of Male bashing going on here, eh? Well, being

of the male persuasion, I hate to admit it, but you are probably

right.

Out of the 3 primary docs on my case (PCP, RD and Heme) 2 are

female.

Interestingly enough, they all went to med school together. My

experience, professionally and personally have seen the same thing.

The women tend to dig a little deeper into the things that don't

always make sense. All 3 of my docs are great listeners and readily

read between the lines. The one male (heme) consults regularly with

my RD. (Dr. Fitch)

Tom from PA

>

> Hi ,(in Maine)

>

>

> Interestingly, my whole team (GP, rheumy, nephrologist) are all

women now. I've found that they deal better with the " gray area "

and

not having black and white answers. Male doctors have a much harder

time with that, in my experience. They like straightforward

answers,

not medical riddles that don't fit the textbook (LOL).

>

> beth

[Guest guest]

Thanks for the reminder. I know that not everyone will receive the hoped for

diagnosis but I am willing to " try " and find one--not as much for a DX

because I already have one from childhood but rather for a way to open up

for doctors to read the report and say " Okay. So this is the problem. Now

let's work together to find the right kind of mix to help support the

disease to help you feel a little better. " A dream? Probably but I would

like to try.

I will be 40 in about 3 months and I have been dealing with Dr's who don't

want to look past the test results. It's been this way almost all my life.

It is frustrating. I know how I feel. I know what pain is and I know when my

body is out of balance with its self. And the RD I am seeing isn't

" listening " to ME. He is too busy thinking text book and about his " new "

cure for Fibro to even begin to think outside the box.

One would think if a patient tests negative/normal across the board but you,

the Dr, can see by looking at the patient something isn't right, the Dr.

would start thinking about and researching the " rare " diseases or the ones

that are proven to show no signs of activity in tests. Is it because they

are too lazy or don't care or could it be they are not up for a challenge to

prove they have been wrong?

I agree with the others who have said the Female doctors seem to looker

deeper into things than the males. I believe it is because they have a

better bedside manner, and even today, there still exists the sexist thing

that the male counter parts are more knowledgeable and the female is not as

smart. My PCP has been battling this with some of her male colleagues. I

personally witnessed one male Dr. treating her less than his equal. Talk

about a mad woman! WOW! They work harder because they have to prove

themselves to their male counter parts. I miss the female RD I had. She was

great.

Thinking of you and hoping you are having a low pain day.

, Oregon

>

> Dear ,

>

>

> FYI- going to a well known hospital/clinic does not guarantee results. I

> went to Boston to an expert in vasculitis research (at the time that's what

> they thought I had), and it was a complete disaster, he was great at first

> visit and then at second visit he tells me it's a complex pain syndrome and

> to see a shrink. I cannot even convey to you the frustration and

> hopelessness that I had to deal with after this. Then again, some folks I

> know have been very fortunate to get answers. Usually the situation has to

> be that you are in bad enough condition and that your own doctor doesn't

> know what to do next. Hopkins usually wants proof and a referral from

> your doctor. Mayo Clinic in Rochester MN was great for one person that I

> know, and terrible for another (diagnosed her with something that she didn't

> have). Same with Cleveland Clinic. It's really hit or miss with any

> doctor.

>

> Best wishes,

>

> beth

>

>

>

--

SPEEDY :-)

Meds:

MTX 15 mg; Prednisone 5mg; Leucovorin 5 mg; Armour Thyroid 60 mg

Supporters:

MSM; DHEA 25 mg; Omega3 fish oil 8 daily; Vit. C; Vit. D; B-Complex; Vit

B-12;

Lithium Ortate; Osteo Comlex; Glucosamine & Chondroitin; and Essential

Minerals, AND cALCIUM 1500 mg

" Love endures all things. "

[Guest guest]

Wow ...he cured Fibro with his mind, eh. I don't know how you

get around that one with him. And sad that he's the only one that

will give you proper meds. Wow, wow, wow. I almost hope you move so

you'll have a whole new set of doctors to choose from.

Just make sure you get copies of all your labwork and keep a journal.

That's going to be your best bet at this point if you need to file

disability. Of course, I know you know all of this and you seem very

thorough - just a little reminder in case.

Good luck with this doctor - maybe a new one will move to town?!?!?!

Houston

[Guest guest]

beth,

you hit the nail on the head - do docs really think that we WANT to

feel this way and not be normal 33 year-olds. Honestly. I lost the

latter half of my 20s due to feeling horrible and nobody helping me.

I would think us searching out docs would show our desire to feel

better. But maybe there really are hypochondriacs out there

who " talk " the same " talk " we do. I don't know. I just know it's

frustrating as heck.

And I agree with you on the " specialized " clinics. I have heard of

many people going to mayo with some of my other diseases and having no

luck at all - but spending a lot of money. And Kirk from this group

himself went to mayo for his headaches and not only did he not get

answers there, the Stills was questioned I believe. So I don't think

it's something to put too much hope in. At the same time, if someone

is at the end of their rope, I definitely think it's worth a try. We

have to keep trying. I gave up for about a year when I was trying to

get diagnosed and I really wish I hadn't.

Houston