what would you tell a doctor?

[here]

So many of us seem interest in what we would tell non-lupus suffers. I thought it might be interesting to ask what would you tell the medical profession.

Just thought it might be an interesting topic. :flowers:

[alobreto]

I'd ask MOST of the rheumatologists I've known who think they know everything:

If you know everything, why is it that it is so difficult for you to diagnose autoimmune problems until your patients have suffered for so long that they are at the end of their ropes? :cry:

Can anyone relate with that? :lol:
Regards,
Angela :flowers:

[RAD1]

Hello Here!
I just wanted to let you know what I told my new Rhuemy on Tuesday. I have been to three other Drs. and not happy at all with their understanding of Lupus. Two of these Drs. are regular MD's. and the other a Rhumey. The rhumey did put me on Placq which hasn't made much of any difference as far as I am concerned and this has been almost a year now. The new Rhuemy said to quit it if I couldn't tell that it was helping. He took lots of blood for tests, the usual Lupus, thyroid ect.ect. Will know what shows up in early May when I go back.
Meanwhile, before the exam I told him that my quality of life was louzy, that laying in bed all day was no way to live a life, the pain day in and out was not the way I want to live my life and I desperately need the help of someone who understands Lupus and can be of help to me.
That's pretty much the jest of it.
I don't care if he thinks I'm nuts, I'm way past that concern with these Dr.'s, I am willing to try anything just to have some kind of functionality to living!!
I know I sound angry and I guess I am. I know it's very hard to understand this disease unless it's YOU trying to cope with living with it, that's why before I made the appointment I asked if he sees Lupus patients because I don't want to see anyone else! At least he has been exposed to "our kind" before. I just hope for some relief when my flares are really bad, so I can function. I don't want to take matters into my own hands and use the pred. without a dr. knowing. I know we all need to have some hope and some help. I've sure spent alot of money trying to find the right Dr.!!! I know we all suffer, it's the pitts :cry:
Thanks for letting me vent too :tantrum:

Ruth

[mcemp]

Hi
I am one of the lucky ones because I have a very good Dr and always had VERY good doctors around me since the 1st day I became ill.
I was diagnosed within 3 months after they started suspecting that I had Lupus.

I am also VERY unlucky though, cause my lungs and kidneys have already been attacked by Lupus.

I would say to all of the medical staff that has taken care of me so far:

THANK YOU VERY MUCH, YOU ARE ALL VERY NICE CARING PEOPLE.
THANK YOU FOR MAKING ME BETTER AND FOR ACTING WITH MY BEST INTEREST IN MIND.
I WOULD NOT BE ALIVE WITHOUT YOU.
THANK YOU VERY MUCH.

:flowers: :flowers:

[Vida]

:wave: hi

to the young eager registrar who i saw at my g.p. surgery just over twelve months ago i would say:-

thank you for actually doing the relevant blood tests for liver functions etc that showed that i have primary billiary cirrohsis (PBC) after 5 years of believing the first dx of ME :flowers: :flowers:

to my g.p.

when i am fatigued pushing myself does not make me feel better but loads worse :tantrum:

as you have told me that i am not the only patient you have with PBC although it is a rare condition i suggest that for the sake of myself and your other patients you do some research - so that you can at least answer the simplest questions that newly dx patients have :tantrum:

i know i have to live with my symptoms i don't need to be told this fact but a little support and understanding would go a long way :angry:

to my hospital doctor

thankyou for listening to me and giving me the time to ask questions :flowers:

thankyou for always being pleased to see me even if it is late in the afternoon and you have been at work all day :flowers:

thankyou for your opend mind when i ask about alternative/herbal remedies for my condition :flowers:

luckily there are good doctors out there they just seem hard to find sometimes - but you can guess from my post who i respect the most ;)

:flowers: :flowers:

[Wendy Rene']

I have seen several doctors! I think I am with my sixth Rhemy and have stayed with her a good while now! I just lost count after a while!! I have heard several things from doctors I will share a couple with you. Once I was in a Rhemy's and was so sick I could hardly hold my head up(stay awake :doh: )Believe me I called and asked if he say lupus patients and of course the answer was yes and he is listed in the phone book as doing so, anyways,he examed me and said I See no signs of lupus. Now keep in mind he had my labwork in hand and I told him how sick I was and had been for a long time. Let me tell you, when he said this I just wanted to GET OUT OF THERE!!!!! :tantrum: I saw another doctor who said I think that you should stop all of your lupus treating medicine and just take pain medicine. :cry: What a dummy!! :wacko: I just got out of there as fast as I could!! The list just goes on and on!! I would tell the doctors>>>>>If you understand Lupus GREAT! If you want to truly help GREAT! BUT don't act like you know all about it and treat us like were stupid!!! Oh yes! Don't tell some one with a chronic,dibilitating disease to stop going on the internet and stop reading to much into it!! This has been such an insult to me!!! We have to learn about our disease!! I finally found a doctor that does care and tries to help,although I still believe there are times I think that I could still get better treatment! GOD BLESS!!

[Vanilla65]

I'd have to tell the doc's, who seem to think it's all in my head, "Time as always proved you wrong." Also that they need to stop being "INSURANCE" conscience, they aren't the ones suffering, and that they need to be more patient conscience. We are the ones who are suffering and need the best they are able to give.

There's more I'd love to say, but not able to think clearly and don't won't to offend anyone.

[oddy]

I've been to several doctors and I would tell each of them a different thing...

I can sum it up to this...

For the many doctors who dismissed me and my symptoms, for the next few who cared enough to send me on, for the few after that who were insulted because I knew what they were talking about, for the ones that wanted to take the easy route out until I insisted on more attention, for the doctor who finally listened and investigated but still treated me like I was every other case that walked through his door....
I say this-
THANK YOU. Thank you for making me a stronger, smarter person. For forcing me to pay attention to myself and stand up for myself. Thank you for making me realize that I don't have to have a major degree and big loans to pay off to care about what happens to me.

[Lily]

Interesting question and thank you Teri for reminding everyone that some doctors deserve bouquets not brickbats.

What would I say to my doc..................thank you for saving my life when no-one else had a clue what was going on :) :flowers:

love
Lily

[LWL2002]

I would say,'Thank You Dr, and I still do thank my Dr for all the good care 'I have gotton over the years. ........Laura :flowers:

[Vida]

:wave: hi

would like to add another thankyou to the ones i put on my original posting.

to the g.p. is saw this week a really big thankyou :flowers: :flowers: because when i went to see him with infected "whiteheads" on my nose he did not fob me off with antibiotics and more gell as the g.p. i saw the previous week had. he listend to me - i have always had a red nose and cheeks and when he asked if i drank and i said no because i have a liver disorder - he listend while i told him that these "whiteheads" had appeared after being in the sun for a brief time and that other members of my family have had the same facial colouring - he then said that he was sending me to a dermatologist to be checked out for discoid lupus so that it could be treated properly.

also when i told him i have been dx with PBC he said yes of course i remember you - he was the g.p. that the young registrar had gone to talk over my symptoms with and he had suggested that i was checked for PBC - that was over 12 months ago now and despite never actually treating me he had rememberd this. he also told me to research it on the net.

:flowers: :flowers:

[rwb200]

Tought I would add to this as the husband of a lovely lady with Lupus.
What would I tell the Doctor.
1.) Don't tell me you understand Lupus if you don't.
2.) Don't experiment on my wife - she is a person to not a lab test.
3.) Be honest with us. We need the facts so we can face this and handle it. If the results look bad let us know.
4.) Liston to what my wife is telling you - She has had this for 18 years. She knows how she feels. She knows if the treatment is working. Your lab tests can't tell you everything.
5.) If none of these work the one that always does is good bye. Time to find a new doctor.

[shopgirlsw]

I would like to ask my GP for a list of specialists that actually have Lupus, and treat Lupus patients, as they would be the most qualified and more understanding of what I am going through. Since my GP does not have this specialty qualification, then he is in no position to make assumptions on how I feel and should be feeling.

Sincerely,

Shopgirlsw
:love:

[dumplie]

I would love to thank my GP as he spends time and listens to me rather than stare at his watch. When things get really bad he doesn't complain when I cry in his surgery and takes the time to try to understand the amount of pain I am in. He does not fob me off with a different form of pain killers (tried pretty much all of them now) but he is more than willing to look outside of the box.

My rheumy is great but his ved side manner can be funny. He calls me the 'runt of the litter' as I seem to have many different illnesses while the rest of my family are fit and healthy. The best advice he ever gave me was to exercise more and try to exercise every day - LOL. Obviously he is a non lupus sufferer and does not understand what it is like most days when it is a struggle to get out of bed in the morning. Exercise????? Just the thought of it makes me want to go back to bed.....Janine

[redrose77]

I would tell my current GP thank you for listening and not thinking I am crazy. Now could you stop hitting me with all the bad news at the begining of the apointment making me forget why I came and then rushing on to the next patient?

To my current rhuemy I would say THANK YOU for believing me and seeing that my symptoms are really and need treatment. Thank you for starting that treatment and for being honest with me about how things are looking.

To all my old doctors I would say thank you for telling me I was mental and that nothing was wrong. Thank you for allowing this disease to progress as far as it has. And of course thank you for ignoring the symptoms that were physically visable when I visited you in favor of diagnosing depression. Also thank you for leaving me in so much pain that my life was a misery for over 10 years and I stopped having a life. Thank you so much for letting me become so diabled that I couldn't take care of my children and still can't manage to play with them.

I know that sounds bitter, and I know that they were only doing the best they could with the knowledge they had but it seems a little unreasonable to blame blood work results on mental illness.