Another interesting Q

[momsumner]

Ok, I enjoyed reading the previous poll of what you tell your dr....but it started a new topic, what stupid things have your dr said to you? I'm pretty new at this and have just started down that road of finding the ONE, but I went to my first Rheumy last week and you know what he told me? Arthritis....no lupus. Ok, well if its not Lupus what is it becuase arthritis doesn't explain all the other symptoms.

I explained the symptoms I was having one of which is complete and utter exhaustion. I said, cried actually, "arthritis doesn't make you want to sleep allllllll the time, even when you have just woken up after 12 hours of sleep!" you know what he said...."IF YOUR TIRED, SLEEP"......did they give you a medical degree for that?

[smiley]

:D lol bet they did.... I have been lucky my first rhuemy doc is my last.. he has been thru this with me.. in and out of hospital and his surgery all the time.... eventualy he said.. I have to admit it is lupus.... but I am one of the lucky ones.. it is not sever there are those out there who suffer so badly.... i feel for them.... if I am tired i sleep.. i justy tell hubby I have to go lay down.. he knows that means probably 2 movies later i will wake and then go back to bed after eating and sitting a while... some days i just feel like a sloth... but if a sloth i am so be it.. it is my life my illness and im dealing with it... well actualy he is too and he does well... bless... kick ur doc in the shins tell him~not good enough try again for the star prize~ and keep at it.. they get it in the end lol long after we do... gentle huggsss Smiley xx :nurse:

[MariaK]

Hi,
I think I moaned about a stand in rheumatologist a couple of months back, but one thing she said really made me boil. In response to me saying that I was embarrassed at my joints cracking, she replied "well we all get that". I had one of those "I wish I'd said...."moments later on. I do wish I'd said "Oh, and do you have to crack your hip to get sensation back in your leg when you are trying to cuddle the one you love?!"Grrrrrr! :angry:
I'm ranting again...... :tantrum:

[teabellyjules]

:wave:

My rheumy blames everything on steroids like me hair loss, hmmmm have been off steroids since March so what will he say when tell him still losing at fast rate? :rolleyes:

Love and hugs
Jules :coffee:
XXX

[smiley]

:D probably to take vit amin supplement...they have an answer for everything..i think they learn that at med school.. ~~how to..(**ss) off patients when you dont know the answer~~written by professor diddlysquat~~ :D smiley xx

[alobreto]

I think the stupidest thing a doc ever said to me was when I showed one a third degree burn on my right upper thigh. Muscle was exposed. I told him it was from being asleep with a heating pad.

He said, "You couldn't possibly have gotten a third degree burn like that without waking up. How did it REALLY happen?"

I said, "You know that the sensory nerve to that area was cut in my last surgery. Why should I start feeling there now?"

On a lighter note, I still recall a nurse's entry in a patient chart when I worked a gynecology floor decades ago. It said, "Vaginal pack out. Doctor in." It cracks me up to this day!
Regards,
Angela :flowers:

PS My experience should be a lesson to those with any impairment of sensation and using heat when not fully alert.

[Vida]

:wave: hi

i think one of the most stupid things one g.p. said to me was "yes it does look a bit infected" while looking at my ear that was so swollen and red that it looked as if it had been hit by a boxing glove :blink:

[alobreto]

I just thought of something a pediatrician asked me after I took my then infant youngest son in because of projectile vomiting. It was written in at the top of the page in his chart as 'Reason for Visit.'

Then the baby vomited a stream that went about 6 feet before it hit the tile. My toddler said, "Dr.___, he does that ALL the time!"

Dr.___ , alarmed said, "Has he ever vomited like that before?"

Regards,
Angela :flowers:

[alobreto]

Me, again!

Maybe the doc thought I was psychic and able to predict that the baby would BEGIN to have projectile vomiting and that is why I made the appointment!

Angela :flowers:

[pisces girl]

:wave: I think one of the most stupidest sayings that my gp said to me once after me describing all my symptons and how awful I felt was the comment -

"Well what do yu want me to do about it?" ooops like hello yu are the doctor and not me, I am the patient here.

Dont know what anyone else thinks but I think he definately got a degree in dumb stupid insensitive sayings for that one. :angry:

What does anyone else think?
Take care,
Sylvia x :flowers:

[zara]

I went to the doctor and one of my chief complaints was fatigue and not having the energy to get through a normal day. I was looking for a solution to get some energy back in my life.

Anyway, on the way out, doc says, "make sure to get lots of rest"!

I said, "no problem, that's all I do." I felt really sarcastic at that moment. I mean, HELLO, did we not just have a conversation about fatigue dragging me down? I feel petty for being annoyed by this comment, because it was meant with sincerity and yes I should rest when my body needs it.

Being sick takes lots of patience--not only with myself, but other people. :sigh:

[MariaK]

How about "Try not focusing on your symptoms too much"(?)
Response should have been, "Well you asked what was going on!"
Should have counselled myself! :nurse:

[smiley]

:D went to a new neurologist once some time back.....wow that sounded like(this one time at band camp)lol anyways i had a had a stroke he did not know me and that my peripheral vision is gone..... cos he didnt look at the notes first ~he did a test wiggling his fingers.. he said `u see it yet~ no i said...now~~nope~now..nope he stoppd and said~ choo lie~..... he was spanish..i said really doctor well read my notes first then diagnose me.... he read them turned red and whispered ~nope choo dont lie~ thankyou doctor and gooday lol :D smiley xx

[JulieT]

Choices choices, ok try this

patient presenting with ear infection (me!) GP "Lupus is outwith the scope of GPs why don't you ring the hospital..............."

Why thank you my good man, you have been soooooooooooooo helpful & understanding (actually I was so gobsmacked I didn't say a word & walked out clutching sore ear in a daze)

Julie xx

ps best site so far, actually had me laughing for a change !!!!

[smiley]

:D omg i don't know... why do docs study soo hard... and complain of hours too much and then on top of that.. turn out to be do ~duh~ at times... and why do we as patients have to put up with it.... I was born in the time when docs were god... before the doc came my mum would make sure there were clean sheets on the bed.. house smelled like dettol.. andno-one but no-one was rude to the doc.. so think of the horror when i was 9 and had my tonsils out.. in a hospital in cornwall run by nuns..... the doc came to check up on me he said ~how are you today~ i was a fiesty little
thing and told him~how would you feel if i ripped your throat out~ oopsss a no no..the nuns put me on the black list... i could not wait till i got well and went home.. in those days u had to stay in hospital for a week to 10 days... i remember how i felt as a child...demorolised and i swore it would not happen again with docs... believe me it doesnt :D smiley xx

[emedlin]

I believe the worst thing a doc can ask, and my rhuemy does, is: "How are you today?" And trust me, it's meant in it's truest formality....like, I feel fine, and you?....not tell me about your symptoms since your last appointment.....I don't get it....

[julbird]

My doctor : "If you have Lupus, it is not active at this time"

ONE WEEK LATER-

Doctor (gravely states with a sigh) " Your Lupus is now active"

Huh?

[JulieT]

I love this message board, makes me smile,

how about, "I am aware that my registrar discussed with you you the possiblity of a cracked rib, however the arterial blood tests suggest a clot on your left lung...."

gee whizz & there was me thinking I must have fallen downstairs in my sleep & failed to notice.............

[artist]

There was a Dr. I saw last yr. who told me that my problems were my "attitude", and that I was looking at it the wrong way.When I can hardly walk or use my hands, I should " be happy that I get to lie around and read a book".

Or, how about the Dr. who asked me what I weighed when I got married (I was barely 20). I felt like responding, "well, what did you weigh, you don't look so hot yourself! ( I look ALOT better than him).

Kristi

[jewel877]

hi
great topic
well, when i'd lost my job because of lupus related problems including "severe neuropathy" documented by doc wallace and numerous neurologists and anesthesiologists...
my local " bozo" rheumy (not doc wallace of course) says..."your symptoms dont match your signs"
i don't take him seriously anyway...he was angry that i'd seen doc wallace .....so i say..."i guess it must be in my head then" and he says

"yes, in part it is"

also 3 yrs ago when i had started plaq i said to my new Int. med. doc that i wish that i would have been started on plaq 15 yrs prior and her response was
"you ought to be grateful that you weren't because you'd be blind right now"

what an ignorant fool! thank god my eye doc had educated me otherwise

:love: sue

[MariaK]

Its amazing-you start thinking about this topic and more classics pop into your head!

I was talking to a doctor about my symptoms and I was telling him that it felt like I had no control over what was hapening to me and my life generally. His response was "Well this isn't unique to you, you aren't the only person in the world feeling like that".

No sh** Sherlock! I can't work out whether it was supposed to be a comforting statement or not!

(ps. Not normally a doc basher because I live with one but sometimes they do come out with some corkers!). :lol:

[Clare.T]

Huh ! So down putting isn't it.
All he needed to say was that's the way chronic ill health makes people feel in a sympathetic tone. That is a major issue these days and holds hands with the loss of self esteeem, identity and options.

Not to mention finding yourself dependent on people who couldn't care or seem not to.

Clare

[KittenPaws]

Doctor: "How are we doing today?"

Me: "Angry"

Doctor: "You need to see a psychologist"

:tantrum:




:love: Kitten

[Vette73ds]

A classic one was not from my GP but from my dad's.

He started suffering from excruciating pains in his arms up into his shoulders, which meant he could hardly move (bearing in mind he had a minor heart attack about 10 years previous and his blood pressure was high). He called the doc in and his answer? "You're suffering from muscle spasms". :blink:

Two weeks later he was walking into town from the car park and had to go down a flight of steps. He suffered some sort of blackout and came around standing at the bottom. Cutting a long story short he went into a pharmacist who told him to go straight to his GP as he may have Angina. He duly went in and the GP said he probably had something mild but nothing to worry about, what she had actually written in his notes was "he thinks he has Angina". :nono:

Two weeks later he was called into hospital for an Angiagram. He was subsequently rushed by Ambulance (with blues & twos) from Cornwall to London as he had a blockage on the aorta leading into the heart - two stents later he came home....we found out that he had suffered another mild heart attack in the town.

[redrose77]

KittenPaws

I got that a lot. My anger stemmed from frustration at not being treated for my pain or illness. Also from being blown off. See the psycologist tell them why you are angry. Get an evaluation and prove your sanity just to anoy the doctor. See the thing is doctors don't like to be told a patient they send for mental health help is perfectly sane just suffering from lack of decent medical care. Note my psycologist wrote my old doctor and said, "Patient is in perfect mental health." she went on to basically accuse my doctor of being a quack. Said that "Patient's real problem is medical in nature and thus requires the treatment of a physician. This provider does not understand how a physician could have overlooked obvious physical manifestations of disease listed in this letter." I had fun at my next doctor visit. He had a hissy and sent me to 3 more psychologists then decided to medicate me himself because they wouldn't diagnose me with what he felt was wrong with me mentally. He also said and I quote here "You made those blood tests positive with your mind. There is absolutely nothing physically wrong with you." After my antiphospholipid antibody test and lupus anticoglutant test came up positive like 5 times. He was bound and determined to prove nothing was wrong with me so he could justify not treating me. My husband sat in the office the day he said that and got really p.o.ed (he hadn't believed this guy was such an @**) then decided I needed a new doctor even if we didn't have insurance and this guy was the only one who did sliding scale in our area. I never saw him again.

[chantal]

haha okay i have a great one .. when i first started getting sick back in high school and had great pain in my chest I couldn?t lay down I was sleeping in a chair at night couldn?t even talk more than two words at a time, and sneezing, hiccups .. all that stuff really painful right. I went to see a heart specialist and he told me it was growing pains !! so I asked him how long it would last he said a few years, and so I asked him so I wont be able to lay down and sleep for two years he said yep that?s right! And he didn?t even do any tests all he did was have me lay down and he pressed down on my chest and asked if that hurt I was like yeah and he was like yep it probably felt like I was pressing hard but I wasn?t that?s growing pains. So anyway my dad was desperate to help me so he thought it might be heart burn even thou I told him I know heart burn this is not that. Anyways one day I was at school and started having a laughing fit over something said and I was in so much pain I was crying and I got sent to emergency that?s where they did some tests and found out I had perecardritis
some doctors!
bye for now :)
chantal

[gretchenb5]

:hyper: This is SOOOO great for my mood! Thanks for all the stories, guys! Here's my little addition...

Went to my internist (who I actually LIKE!) for maybe the 3rd time in 2 weeks. I asked if he was going to run any blood work for lupus AGAIN. He said, "well... you do have a lot of little aches and pains"! LITTLE ACHES AND PAINS!! Luckily, my husband was there with me and told him EXACTLY what his aches and pains were going to be... Also luckily, this doc is now very supportive and is prescribing pain meds while referring me to a pain clinic (and got me in to see a great diagnostic rheumy -- no bedside manner, but that's ok for now).

Am really enjoying this site, everyone, even as I lay in bed hoping I'll hold dinner in!

gretchen

[gretchenb5]

Ohhh... just had to add this in response to redrose's experience (and a lot of people's experiences) with psychologist. I AM a psychologist, and my doctor recommended I see a psychologist!! And I acutually DID -- not because I felt there was anything wrong, but because the frustration and anger with the situation and my health in general was MAKING me depressed! Sound familiar?

gretchen

[Tom]

:lol: This is fun!

My Rhuemy is a classic "Drive through doctor" He comes in, asks how I'm doing, checks my joints (Usually swollen), looks at my bloodwork results, then tries to leave (5 minutes tops!). Well I started taking a list with me because I always forget what I was going to ask him until later. :doh: He seems agitated when I do this but hey, it's time he started giving me some answers! So I tell him my brain fog keeps getting worse and he tells me "I don't think that it's lupus related". :o I was speachless! Then he says "It could be from depression". Ok....that isn't caused from lupus? So he tells me "Well....your APS results are very high". Ok...isn't that part of lupus? (Secondary means caused by, right?) So he tells me I need an MRI, I guess the one I had done 9 months ago wasn't good enough! Finally he tells me I need to see a psychologist to test me for brain fog. Sheeeeeeesh!!! I am confused on weather I got my moneys worth or not! I do know that is the last time I am going to him! :wacko:

Gretchen, I would be very interested to know if you are familier with this testing, and if you think it is worth the effort.

[gretchenb5]

:wave: Hi Tom!

Ok... well, I think brain fog is pretty common with lupus, from what I've read (I know I have it occasionally). A psychologist really couldn't do much for the "fog" itself, only with how you deal with it. If you're feeling really overwhelmed, scared, anxious, or depressed either as a precursor to the fog (which I doubt, but is possible) OR if you're feeling any of those things because of the fog (and other symptoms!), a psychologist could definitely help with coping strategies (it's also a great place to go and just vent). You'd want to look for someone who specializes in working with people with chronic illnesses (those can be hard to find) or someone who does cognitive-behavioral therapy -- NOT psychotherapy (Freudian therapy). Cognitive-behavioral therapy focuses on how your thoughts affect your behavior, and how your behavior affects your thoughts. That can help guide you through some of the frustration of dealing with this disease. It can also be helpful for family members!

Hope that helps some -- please let me know how you're doing!! Sounds like we've all had very similar doc experiences.

Oh... by the way... MRIs at least 6 months apart can be telling if there are neurological changes to see. I actually don't think having a new one now (9 months later) is a bad idea, especially if the fog is a newer phenomenon for you.

:flowers: gretchen

[Tom]

Gretchen, :wave:

Thank you so much for your reply! :flowers:

I feel like I'm standing on a street corner most of the time waiting for the right bus, not knowing which one to take. I get on more wrong buses then right, and most of the time I end up back on the same corner with nothing to show for my efforts. :shrug: Now I know where to go! :woohoo:

I have read a lot on brain fog too. That it can be caused by Lupus, and/or any of the secondary illnesses we have. It can range anywhere from mild to serious. My GP expained to me that in my case, I went undiagnosed for so long that it has taken it's toll on me. That inflamation in the body also includes the brain causing this effect (I have a great GP, he dx'd me for lupus the first day I saw him! :thumbs: Sometimes changing doctors is a very good thing!!!). He has refered me to a new rhuemy who HE says is great. If she is as good as he is, I am set!

As far as coping with the fog, I am ok there. The people on this site have helped me keep my sanity and given great advice on dealing with it, as much as possible anyway. I just would like to find a way to get it into the mild range.

I didn't know that about MRIs. For me it's a cost issue. The last one cost me over $600, and my insurance paid the other $2,600. :cry: Since it came out normal, I don't see the need for it again unless things get much worse for me.

Thanks again! It's great having people in the medical profession on here too! :love:

[rwb200]

Stupidest thing my wife and I have heard is.
I'm a Lupus Expert. _ If this is the case great cure it.
How can anyone be an expert at something they know so little about? If your an expert please share the knowledge millions of people will be very thankful to you.

Next was when we were just trying to figure out what all this pain was she was having, why her fingers were purple, why she had this rash all over her.
The only thing wrong with you is your smoking - If you stop this will all go away.

Smartest thing a Doctor has ever said.
Are you sure you are getting the treatment you need for your Lupus ? You may want to look at some other Doctors to insure you are getting the care you need.
Let me tell you if a Doctor ever tells you this get a new Doctor as fast as you can. One Doctor never does this to another unless he is sure that something is wrong and you need help that he can't give you and the other doctor isn't giving you. It is as close as you will get to a doctor saying you're a victom of malparactice.

[Wendy Rene']

WoW!! THere have been so many.......Let's see

One said you need to stop taking all of your meds except pain meds! Lets just treat your pain??? Which I was thrilled he was willing to help treat the pain,but then the Lupus could possible attack me like crazy and then the pain would just get WORSE!!! :wacko: What a NUT CASE!! (NEVER WENT BACK!)


I Saw a RHemy and I was so sick I could hardly sat up straight and stay awake while waiting to see him. He came in examined me,had my lab work in his hand and all my Medical records. He listened to me explain my whole situation,he could see that I was exhausted and lathargic and said Ok I see no signs of Lupus at all :blink: What an NUt case!!!!! I never went back!!

I saw a Rhemy who seemed real knowledgable while in his office of course he Did not treat headaches,took me off my meds and said not to start taking them again even when I started to flare! :angry: I got fluid on my lungs and he refused to work me in at all not even in a few days. Just didn't care. Told me to go to a walk in clinic....I haven't been back!! He was a real winner!

I saw a Cardiologist who told me that my rapid heart beat was constant panic attacks. I would be sitting still very calm and my heart would race and beat terribly. He was just dismissing me because he did not understand Lupus. Because Tacycardia is a symptom of Lupus. He also told me that I should seek help to learn to calm down. I later say another Cardiologist and he ran test and said you have tachycardia and the test all show'd that. He said it is a symptom of Lupus!! I now know that and thank God this doctor is treating me for this!!!!
Rapid heart beat is no fun at all. I know that alot of us on the boards deal with this and it is scarey!!

THis is the last one I will share and this one really makes me ANGRY...... I hate it when the doctors say STOP READING SO MUCH ABOUT YOUR DISEASE!! STOP LOOKIN ON THE INTERNET! STOP TRYING TO DIAGNOSE YOURSELF>> :tantrum: :tantrum: THIS ONE REALLY BURNS ME UP!!!!! WHAT DO YOU ME!!!!!DON'T LEARN ABOUT MY DISEASE AND COUNT ON YOU NUTS TO TELL US WHAT'S WRONG WITH US>>>>> YEAH RIGHT!!!! :blink:


THERES MORE<BUT I WILL GIVE SOMEONE ELSE A CHANCE!!!GOD BLESS!!!! :wave:


By the way, I do have a very good Rhemy now and I thank God for her..... They are hard to find so when you do find one hang on for dear life..........

[rwb200]

Doctors say many stupid things. What we have to keep in mind is that they are human and do make mistakes as well. Bad part is if you make a mistake at work it normally does not effect a person as much as it does when they do it. Also when they make a mistake it effects you directly and that hurts.

We have no way of knowing when we go in to see a Doctor if he is good or if he is bad. A Diploma only tells you he went to school and passed a test. It does not tell you how bad he did in school, who he cheated off of to do it, who his daddy is that paid for that and what else he may have paid for to get it for him.
Or even how many times he had to take that test to pass it and get the license we put so much on.

If he makes to many mistakes we do not have to put up with it we can go to another source for the treatment. This may not be as easy in some locations as others and may require and little travel but options are out there and each and everyone of you have the right to exercise that option and go where you feel you are getting better treatment.

The worst things a doctor can tell you is that he knows all about this desease when he knows little or nothing. By the time you figure out that they have been blowing smoke they could have hurt you or caused you undo damage.

Keep a mental note of how many things you could type in here and if the list gets to big or if you seem to be getting no answers only worse it could be time to start to look at why and if better treatment is available at another source.

If you walk out of the office to many times thinking this doctor is stupid then they may well be.

[Woofmonster]

Wow! such a relief to know other people, have had the same experiences! I had been seeing this doctor for about a year which is amazing because they change so frequently here, and told him that I am at the end of my rope, I almost crashed the car, as I didn't register that the light had changed until I'd gone through it, I was tired of the joint pain that didn't allow me to sleep for more then 3 hours at a stretch, something is wrong. My husband had come with me as he was thinking that I did not complain enough to get the doctor to do anything! Well, the doctor grasped my hand and then looked into my eyes, and said, this may be hard to accept, but I feel that stress and cigarettes and perhaps some deep emotional or religous scar is what your real problem is. I looked at my husband who was shocked speachless, and then said you are incorrect in your dianosis, We are at a great time of our lives as our sons are settled in good jobs and happy, our 30th wedding anniversary is coming and we couldn't be more in love. So I feel that if you can't help me then you need to refer me to somone who will. He referred me to a rhume and within 3 months and many tests I had Lupus SLE, Raynauds, to add to my osteo, bursitis, and IBS. I still have to see the doctor that made that inane comment, as he is my primary, but he doesn't seem to be able to meet my eyes anymore.

Thanks for the chance to vent, Woofie

[Plaquelgirl]

Okay,

I got one from my former dermie. Examining one of the large scaling lesions on my cheek... "Just put some Neosporin (OTC anitibotic ointment) and a band-aid on it."

:blink:

I was also given oral antibotics for about a year, that were useless.Then I met my new dermie who diagnoised me with DLE by biopsy on my first visit.

Neosporin and a band-aid!

:wacko:

[weedhopper]

:lol: i've got a Dermy one too. When I went in to one a few years ago for the bald spots on my head. He looked at them, tugged my hair, and asked if I had a history of female baldness in my family. No. None. After also looking at my round scaling rash I had at the time,( and ordering an Ana done. ) told me it was Female Patterned Baldness and said to count the hair fall out because he thought " It'll be interesting to see how many hairs over 100-150 day you lose."

I was always annoyed about that, even more so when my hair grew back, only to fall out again. But the piece da la resistance for me was recently when I got a copy of my record with that Dr. and it says I had "MALE patterned baldness"!!!!!!

When did I change sexes?!?!?......And WHY DIDN'T ANYONE TELL ME!?!?!?! :blink: :lol: :P :rolleyes:

[PaulC]

When I first questioned Lupus as being the cause of all my symptoms and approached my GP I was told that "Although you show all the signs of having lupus, this desease is so rare that there is no possibility that you have it. Give up smoking"

Fortunately, this doc went on to make a major medical breakthrough to the area.... She retired!
:rolleyes:

[Lily]

:lol: Paul roflmbo

love
Lily

[here]

Paul I think that is one of the funniest doctors remarks I have heard to date. Boy did she contribute a great deal to the medical profession when she retired!

I will be laughing on that one for days and remind myself of it when I get down about things.

Thanks for sharing,

J

[shopgirlsw]

:D These are all so good. One time when my dad was alive, he went to his doctor for Virtigo, the doctor told him to go home and bang his head against the wall until it was gone! My mom and I still laugh about that one!

Hugs to all,

Betty

[Plaquelgirl]

Hi Betty,

After reading all these wacky doctor advise posts, I feel like banging my head against the wall! :wacko:

Where do these doctors come up wth this stuff? It's kinda scarey :afraid:


Luv Plaq

[larraine]

hey Alobreto with regards to your post with the heat pad i was just wondering does anyone else find they have to get into really hot baths nearly scolding to get some peace? or is that just me? i suffer really bad with SLE and Reynolds my feet and hands are constantly like ice

[cornishgirl]

I remember first being diagnosed at he age of 17. I had, 2 episodes of blood clotting on my lungs and was patiently waiting for the doctor to come to my bedside to deliver diagnosis . Along comes this man who sits himself down on my bed (I'd never seen him before in my life), and promptly says you have lupus and APS. Are there any questions you'd like to ask? Well, you can imagine I didn't have the first clue about these illnesses and so my first question was, What does that mean? Well he says, I'l be sending you to specialists, but the long term diagnosis isn't good, you will probably never have children and could well be wheelchair bound by the time your 40, is there anything else? Hmmm I thought, well thats my life done with. I can't believe knowing what I know now that a doctor with such obviously limited knowledge about the illness would tell a 17yr old girl news like that. Thank goodness I can laugh now. Not to say his words were cast away easily but I think this definitly rates as one the stupidist things a doctor has ever said, especially considering I have a happy, healthy son and have even played county netball since my diagnosis lol.

[Lily]

Hi larraine,

I have Raynauds also, one of the worst things you can do for it is plunge yourself into hot water as it can damage your blood vessels and make the condition even worse. Try and warm up slowly with tepid water and increase the temperature slowly. Also I always wear warm sock and boots and gloves to help limit attacks. Its the blood vessels spasming that is the problem, if we can keep them at a more even temperature it helps. Mind you this is enough for me, but some others need medications that can help the condition - its something to discuss with your doc if your Raynauds is really bad.

love
Lily

[flowergarden]

Tom, the brain fog testing is done by a psychologist who specializes in neuropsych evaluations. They can do some quite specific tests to see where your deficits (and strengths) are. That is considered documentation for disability. I just had mine done, and while I wasn't surprised, it was unsettling to see the results on paper.

I saw a rheumy once a month for almost a year. One month I asked him about my chances of developing scleroderma. He said it's rare, so it would be highly unlikely for me to get it. I replied, "Even with the centromere antibodies?" He said, "Oh, you have those?" (It was in my chart notes.) Then he said that my chances are high, considering I already have an A-I disease.

The next month I had another question about scleroderma. He assured me I'd never get it. I gave up the subject.

He also told be once that the EEG I had, which said I have a "seizure disorder NOS", did not show that I had seizures. He didn't feel I had them.

A couple months later I asked him why he thought I didn't have seizures. His reply? "I never said you didn't". He even had the nerve to tell me I must have him mixed up with another doc.! I didn't talk with any other doc about it.

That was so crazy-making for me that I had to find someone else. That's too hard to deal with on top of brain fog. :wacko:

[Sebbie]

I had to post...

I had our third baby this March and began to have a huge flare shortly after. I had been hospitalised with chest pain 3 times and finally was treated with a pulse dose of pred. I was released straight away but had a follow up visit at the docs one week later. The rhuemy asked me how I was feeling to which I replied " I feel a little better but I am still having strong chest pain and can't do more than 10mins standing before I need to rest. I am constantly out of breath - I am only 27 and shouldn't feel like this! This isn't normal". His glib reply was "oh at least you are feeling better!. Taper your pred and get more exercise"
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smilie
The next day I was back in hospital, diagnosed with mycarditis and vascultis. I could barely breathe. Needless to say, I no longer see this man. He insisted that it was pluerisy even though my symptoms were not at all indicative. The cardiologist was somewhat startled by this other doc.

Lesson for me - trust your instincts and listen to your body!