To people getting **** FROM DOCTORS:

[jed9999]

My heart goes out to so many of the people who read the boards here and contribute in this forum. I absolutely HATE the treatment some people get from holier than thou medical personnel who manipulate and abuse vulnerable, sick people with their rudeness and scathing attitudes. The fact is MS is often extremely hard to diagnose, and even harder to treat. I believe this catches some doctors in an uncertain world where they cannot stand to be, and they often/sometimes dismiss the potential MSer with harsh words that cover their own uncertanties. I come to this conclusion because in the past 40 years I have been treated poorly enough myself even with a diagnosis. I suggest we see ourselves as the consumers we are; we don't put up with extreme rudeness from store clerks and neither should we from the doctors we are paying. My advice is to Be strong-Be bold! State your case (without undue endless details) until you find someone who is human in his or her approach. Hone in on several things you know are symtoms, ask for testing, and state your case, politely, stating your intentions. If this doesn't get what you desire, move on and find that one person who does both listen and hear you. It's not right because we are the ones suffering that we should have to put up with their moods, tempers, and pettiness. I've also stayed away from doctors for years on end or only gone in once a year. That's not fair to us either. Move! Devote yourself to finding a good doctor who you can put your trust in. I am certain you won't regret spending some time in this important decision. I also suggest you stay with this Forum to get support.  Best of luck. JANE in Indiana


This discussion is related to Desperate for answers.

[SarahL2491]

Oh, I know, I just threw it in for comparison, not to distort the thread.  Beat me with a wet noodle!  Just not too hard

[COBOB]

Sarah,
Welcome to the forum.  This is a very old thread.  You might want to start a now post about this.  While there is no test for Fibromyalgia, here are specific diagnostic criteria that are not common to MS (like the specific pain/tenderness trigger points.  A Rheumatologist would typically diagnose Fibromyalgia, not a neurologist.  If a Rheumatologist rules out fibro then it is back in the Neurologists court to figure out what it is.  That is how the "rule out mimics game" works.

Bob

[SarahL2491]

oh lordy, I can't even get them to give me a trial dose to see if it will help at all!  They just look at me, don't listen to what I say, and pat me on the head and tell me I have fibro and "gt over it".......I don't yet believe in fibro, it seems to be a black hole, a catch all.  If you are afraid to Dx me with MS, how can you so willingly drop me into a fibro black hole just because you "think it might be"........

You said a mouth full for sure!  I am trying to get a new neuro now.  Lets keep this one going.
Sarah

[Deb61]

Priscilla, please do start a new thread.  It's weird that you can't start the expensive, yet critical medicine, needed to keep the relapses at bay in MS.  CRAB drugs, are just about the only thing that's successful right now in the 1st line of defensive against MS.  I don't understand your doctor's thinking at all.  Can you see another neurologist or are you stuck with this one?

[Lulu54]

Hi Priscilla and welcome.  I don't remember crossing paths with you before, so excuse me if we have already met.

This is just crazy to be treated this way - I would love for you to start a new conversation and post this into that thread.  Many will miss it here because it is at the end of an old conversation.

I'll wait to see it up as a new one and comment there - but you are right, there is no excuse for this kind of treatment.

my best,
Lulu

[Priscilla83]

I ended up with a 4th relapse because the senior neurologist in the government hospital I went to did not allow me to start interferon treatment eventhough I had the drug in my fridge and paid for it.  She gives ridiculous comments like 'you can start, I just wont renew the med for you.' and 'if other neurologist can provide you with the treatment, then go ahead'.  Is this how a dr is trained to treat sick patients? With no empathy or care?? I know Rebif doesnt guarantee a person will be MS free for the rest of their life but it reduces relapse rates, hence reducing disability.  I have lost full function in my feet and I just turned 26 this month.  I will let you guys be the judge.

[CareBayer]

Amen, thanks for making this post. I'm going through it right now.

[wadeheather]

Absolutely!  Still a question for me whether it's me that's crazy or them.  However, everytime I hear something like this I feel better. The last couple days I've actually felt kind of normal....

I appreciate you all!
Heather

[Lulu54]

Hi Jane,
You sure said an important message here - if we don't advocate for ourselves and seek out the bes,t we can''t expect others to do it for us.  Thanks for the pep talk - we all need encouragement at times to look out for outselves.

my best,
Lulu

[kmil1999]

I have the most appreciation for docs that are able to say I don't know.  I believe they are the most intelligent and I trust them the most!  No one person can know everything.  To admit your limitations and be able to point a person in the right direction to find the answers is important. There is only one "person" that is perfect and I am not ready to meet him yet!!!   Karen

[Eyesnlegs]

and another ditto - very well said

Pat
x

[Karen99]

Ditto.  Absolutely correct.

[Ufrustrated2]

i wouldn't think of leaving. in all these years this forum rates in the top 5 of "beneficial to quality of life" for me. and i just found you less than a year ago.

i would shop around if not for going to the VA while i'm in between jobs/careers.

thx to all for being here ...

[Guitar_grrrl]

HEAR, HEAR!  I couldn't have said any of that better myself!  I feel so fortunate to have a kind, caring, wonderful neurologist!  Would that they'd all be so conscientious...

Cheers,
Guitar_grrrl

[Sarahsmom46]

Well said.  

I think these types of holier than thou doctors better get on board with the "new patient".  The new patients are not going to put with status quo care and will insist on being an integral part of their healthcare.  I think the time is passing where patients will sit quietly and say nothing and do what they are told without question.  

Some health practices like my PCPs office encourage patients to be a partner in their healthcare. Let's hope this movement will extend beyond the primary care and into the specialized arena especially with neurologists who can be more of a challenge to work with.    

Julie

P.S.  I happen to have a good neuro who listens :)

[Becky559]

Hi,
AMEM! You said my mouth-full.  I also can not stand a doctor who will not listen to suggestions if he didnt think of it first. You would think that they went to school to be GOD and even try this approach. LIke nothing they say or do, should be challenged. I am also sick of it too!

Now, to all the good doctors,,,thank you! We all appreciate a kind and smart doc that is ok that you are a part of your own health care.