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Sjogrens Topics => Living With Sjogren's => Topic started by: 1mommyof8 on March 16, 2009, 08:07:52 PM

Title: Rheumy appt today.. WHAT A JOKE!
Post by: 1mommyof8 on March 16, 2009, 08:07:52 PM
Well, that the most special appt i have ever been to.. First he got a call from his wife, ok thats fine, then he comes back in asks me some questions, doesnt look over my symptom list, pokes my back, glances over my hands, pokes my hips and upper shin... OUCH!

then he asks if i have Jaw issues, IBS or depression.. i said yes, not knowing he was trying to "place" me in a diagnosis that he had decided on before he walked through the door..

Looked at my bloodwork from a year ago ANA neg, RA neg.. and said.. yep you have fibromyalgia.. lol.. ok thats fine.. But i broke my jaw when i was 18, so it does give me issues.. i have had IBS since i had my gall bladder out, only if i dont eat right (high fiber) and depression, well 2 abusive relationships in a row and raising 6 kids alone, who wouldnt be?? LOLOLOL.. so then he says  "you wake up alot at night? " yes because i am in pain.. oh well i think you need a sleep study, this is probably all related to obstructive sleep apnea.. OK THEN!

"here is my recommendation, he goes on to say i will let your PCP know what my diagnosis is, and how to treat it.. ie.. moderate excercise and meds... Lyrica, Cymbalta or Effexor.. peachy!! i asked about my back and he said we arent going to worry about that right now, lots of people that are 30 have DjD.. ok great.. i asked what about doing further blood work.. he says i know its not sjogrens, i can tell by looking at you you have Fibro.. (clothes were always on, including shoes long sleeves.. again remember he never even looked at my symptom list..) He said further blood work would just confuse me and worry me and scare me more.. "Do i look scared buddy? " (didnt say that).. he said i have trouble with my eyes also, and im sure its the same thing..

So that was rather demeaning and frustrating.. i am wondering if there was something in my chart that said "whack job" just ignore and pacify.. hahahaha..

He did say he was going to have to doc check for Hep because alot of my symptoms mirror HepB..

he said, dont worry, we wont let you slip through the cracks and we will see how you are doing.. just make sure you excercise its the key to feelnig better..

Any lovely opinions?? guess maybe i dont belong here, and its fine if i dont.. but what happened to "ruling it out".. he said half the population has ++ANA and no disease.. i really didnt know what to think.. since i dont know much in this field..

dry mouth - sleep apnea
dry eyes - because he has it too
DJD in back - same as half the population
Depression - Fibro

ok im done.. how flipping funny!!!

Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: salsen on March 16, 2009, 08:16:05 PM
You need to run not walk to a second rheumy for another opinion.  See if the SJS foundation can recommend a doctor in your area.   Whether you have SJS or not is discovered from looking at all the symptoms and LISTENING to the patient.  A complete history is very important.  This is not the time to pick and choose what will fit your diagnosis.  Anytime your gut feeling says this is not right go for a second opinion.   He is not the last word on your diagnosis.  Good luck to you.  I know there is a doctor out there who is more suited to you and your needs.  Relief of symptoms comes only with good care!
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: irish on March 16, 2009, 09:41:00 PM
Hey, did he leave the room to smoke one of those"funny" cigarettes??? How about snorting coke in your presence??? Yeap! You found one of our finer specimens who have all that education and don't know what to do with it. Like was said---run, don't walk to the nearest rheumy you can find that sound good. Have you got a teaching university near you where you could get some "interested" doctor? Good luck the next time. Irish ;D
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: wednesday mc haggis on March 17, 2009, 01:48:07 AM

sounds like the rheumy visit i had few weeks back, infact i think yours and mines are sharing notes.

  So So sorry you had this, i know how awful i felt at the time,  i was told he could tell from looking at me it wasnt SJS my teeth were too good, and i had some saliva( thick ) , wouldnt listen to half my symptoms either, and yup poke about, find tender points and say Fibro, sounds so familiar, though he did take time in the appointment, thats coz i paid privately to see him, he wasnt our NHS.I wish my works doc was my rheumy, he listens more to me and he agrees, he wouldnt be convinced by that with no bloods or biposy taken , he even gave me advice on how to speak to the rheumy i see in a few months, why cant they all be like that ??

    I tried effexor, took a bad reaction , my rheumy told me there was no treatment for fibro and it was all stress related, go home and think your way out of it he said, well i am, im thinking new rheumy lol

  keep your chin up, i know how downheartening this can be, but he isnt the only doctor , hope beyong hope you find a good one

T x

Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: Patze on March 17, 2009, 04:36:28 AM
Oh Christi, you did mange to find a special one, didn't you? :o  Dang!

I'm sorry that this guy probably had you pegged before he even talked to you, how sad.  By the way, chasing after several children seven days a week isn't exercise?  Since when? 

I too agree, find another one if you can.  Have you posted in the Looking for a Doctor section yet?  You never know if a fellow member might just be able to recommend another rheumy.

Hang in there and take care -

Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: kim31072 on March 17, 2009, 06:52:06 AM
Find a new doc.

About 5% of the population has a pos ANA with no disease or illness present.The # increases as people age.He should have redone your labwork as it is a year old with no conclusive results.Thats just ruling out any further issues that may have arisen in the last year not "further cause for worry"

Get your medical records and read them.Your dr office is required to provide you with them.There may be a charge but you are required by law to be furnished a copy.I have mine and update every year.My rheumy did not charge me for them and I will add year by year from last print.This is just common sense...I read about a woman who had the same dr for 36 yrs.His office burnt down and they did not have their files on comp or disks.All of her records were gone.All tests were gone.I have had mine every since. ;D

DJD is common in the general population.Not at 30.Median age range is around 52 years old.I had an MRI done 5 yrs ago after a dr reported no abnormal findings.I found out when I got my records that I had mild DJD in T9-L1.I was told the MRI was "normal"...DJD is not usually seen in women in their early 30's..I would have felt much better being told.."your Mri shows some DD in the spine we will keep an eye on it...not "oh its normal"

I have an new PCP.That wasnt the reason I switched..I had changed before I found this in my records..I just had issues with some other things the dr did/ decision to change was reinforced as the right one when I found that.

I hope you find a new dr soon and can get some solid answers.

Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: JJ on March 17, 2009, 07:16:30 AM
You know maybe we should walk into the room for our first visit to the Rheumy and

pull out a notebook with pen in hand and ask him stupid on a scale

from one to ten, ten being often........ how many times while treating a patient did

you make them feel they were more trouble than the amount of money you take from them?

Do you often dismiss your patients and make them feel as if they are crazy? In your

opinion is running tests more trouble for you because you have to write it down or

because you cannot squeeze another 3 patients in the door because you've taken up

to much time with the patient you are currently seeing? When exactly does your ex-ray vision kick in?

Have you ever thought that due to your aches and pains as well as eye dryness that maybe

you should be tested for Sjogren"s? Lets just say if you had a choice between loosing your

medical license and running a test which would you choose?

I think that would be the best way to weed out a bad Rheumy......

Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: wednesday mc haggis on March 17, 2009, 09:11:32 AM
JJ amen !!

T x
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: Cally57 on March 20, 2009, 05:23:52 AM

I had an appt very similar to yours yesterday.  It doesn't matter (she said) if it is Sjogrens or not, it is a SYNDROME and nothing can be done about it.  She said most likely MY other pains and aches and fog and exhaustion are caused by being depressed.....which I take medication for.................she talked to me like I was a child.. You see Cally depression can cause you to be anxious and worried, and that can cause the symptoms of pain, then you worry about that and become even  more depressed!!!  WHY DIDNT I THINK OF THAT!!!!
I just have to STOP worrying and I will be ok....I just need different drugs for depression.

In a year and a half I have never been so mad, so disappointed, so frustrated, nor felt so demeaned by a doctor.  I drove almost 400 mi round trip, spent 9 hrs of MY DAY, to be demeaned and told it is my head, I am just an hysterical, depressed woman.

She kept leaving the office to read stuff about me on the computer and would come back with more info about me  "in that why are you here tone"

She did simple tests on me in the room, would not listen to my concerns, interrupted me....and generally was in a big hurry.  You see my appt WAS scheduled the day before, but her child got sick and she had to schedule for the next day (yesterday) I listened to HER!!

She took a chest exray and some blood.  She doesnt care about my tongue, looks ok to her, doesnt care that I cant swallow, doesnt know what that could be.  I think I was with her for Ohhhh about 20 min tops.  No return appt.

There were other asinine things said, done.  I think I will just forget I even went THERE or met her, because she was a forgettable kinda gal.

JJ.........I am going out to buy a notebook TODAY :)

The only thing that made me feel better was reading the posts here!!!

Cally 57 -- Newbie
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: ruby52 on March 20, 2009, 06:49:55 AM
JJ that is hysterical!Good thing I didn't see it before I went to my appt. yesterday.I would have attempted it just for fun.Cally that is really a shame to be treated that way.What a bad Dr.Don't give up searching for answers.Fingers are crossed you'll get the caring Dr. everyone deserves.
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: Cally57 on March 20, 2009, 10:06:14 AM
THank you, I do deserve better than that.  Thank the powers that be, for this web site!!!
It was just a shock, to go from caring professionals to THAT.

I spoke to a the  nurse today who called  to give me results of an autotonic test, <neurologist> from last week, which showed my nerves to all my body organs and functions are showing things that are conducive to having Sjogrens and auto-immune.  He was very kind and we laughed a lot.  And he was SORRY that happened to me.  I told him, how disappointed I was--because he cared enough to ask how it went.

I told him he made my day, just by his manner and care.  He suggested I get another opinion :)

Take care everyone, thanks for being here!!!
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: Chickpea on March 20, 2009, 12:29:03 PM
Hi Cally

Ruby's right - you really do deserve better than that.  The nurse you spoke to sounds like a good soul - a simple apology, a chance to laugh with someone, a little bit of care ...  Isn't it amazing what a difference it makes when just one person listens properly and responds with kindness? 

Let us know who you find to give you another opinion and how things go.

Take care - Chickpea
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: Patze on March 21, 2009, 06:34:49 PM
Hi Calli,

Can I also say wow?  I know what you mean about the popping in and out, what is up with that?

The first time I saw the current rheumy, he was in and out so much I saw him less than 10 minutes tops - I swore the man was going to give himself whiplash.

Will you be going back to her?

Take care and hang in there -

Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: Cally57 on March 22, 2009, 04:01:03 PM
Hi Patze and Chickpea,

Uh no I won't be going back to her.  I have enough problems without someone eluding that I am causing my problems by worrying too much......very condescending and un-caring, toooooooooo busy for ME!!!!!!!!

I have access to the Mayo Clinic and I think I will go there.

I just found out that my autoimmune thyroiditis is also called Hashi's :(   All this time I did not know. 

I know I have Sjogrens, because of my eyes.  The doc did a special test on my eyes.  My throat is VERY dry, so much so I can't swallow properly, I have to be real careful, even when I eat.  My tongue hurts BAD, my ears, I dunno, I think I need to have those ears looked at too, it is getting worse, I can't hear anything either.  And lots of other things.  I have no choice but to chew lotsa sugar free gum AND candy, etc to keep my throat and tongue from hurting so much, I use Restatsis twice a day for my eyes.

I hope two systems can work together, my local hospital w/Mayo Clinic, if not I will cross that bridge when I come to it.

Patze, you wouldnt believe the things I have seen Drs. try for the 20+ yrs My daughter had Crohn's....they are some mighty fine stories....LOLOL.....we still laugh today, so I am seasoned.

Here is what I always told my daughter, there is a dr on every those folks who might be drs on here, sorry, I am venting :)  Lots of truly GREAT physicians out there. But we really do say that :)

Thanks everyone for the feedback!!!
I sooooooooo appreciate it.
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: Patze on March 22, 2009, 05:14:57 PM
Hi Carol,

I'm glad that you can laugh at some of the lousy situations that you and your daughter have gone through.  I wish that we patients wouldn't have to go through some of the crap, but I guess in the long run, it helps us keep the better doctors and fire the inadequate ones.

Thanks for the smile (Dr. on each corner!)!  :)

Take care -

Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: SeaBreeze on March 23, 2009, 10:49:52 AM
Hi Christi, I'm sorry you had such wasteful appt... I agree with the rest, shop around for another doctor...

I have gone to appointments with a tape recorder and asked if the doctor minded me taping our discussions; at the time my intent was so I could listen to it later..

This doc was always half way out the door, appeared distracted and gave quick vague answers.

Boy, did I see a change in his attitude during that visit... he sat down, spoke with a concerned tone, answered all of my questions thoroughly, was not condecending, and actually asked me if we had covered all of my concerns... It was amazing what a little accountability will do for the quality of a visit ... I hope you find a good doc soon, they 'are' out there...

Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: 1mommyof8 on March 23, 2009, 02:42:23 PM
WOW that is amazing, you all have such good ideas.. and yes i think you are completely right, it comes down to accountabiliy.. i am on Molina, so really who cares about my health right? and i have not gone to the doc about most of my symptoms until recently when i thought i was "taking care of things i had ignored" and then i get dubbed a hypochondriac of sorts, and get "told" my symptoms, so i fit into the category he wanted me too

i too got told, not in exact words that basically this all had to do with my mental health/depression issues, and when he heard i had PTSD, he continued with that theme and based it all on that..

sigh.. what a day that was..

good luck
Title: Re: Rheumy appt today.. WHAT A JOKE!
Post by: puppybreath on March 23, 2009, 04:21:03 PM
That my dear is an excellent idea!!! 8)