stressful dr appointment

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SJJ
Regular Member


Date Joined Jun 2006
Total Posts : 20
   Posted 1/29/2009 1:33 PM (GMT -7)   
I will try and make this as breif as possible.  I have been having symptoms for almost 6 years (since the birth of my daughter).  Symptoms include: Horrible mouth ulcers (only get better w/pred), nose ulcers, fatigue, migraine w/aura, foot pain, joint pain (elbows, knees, esp lower back), finger swelling in am.  Some what of a sun rash on my cheeks when out in the sun, but not raised, psoriasis and blood in urine.
Anyhow I was diag w/ RA in March of 06.  Sed rate=44, anemic, RF=19.  That drs office was crazy-3 hour waits.  Fast fwd to 2008 new rheumy does not think its RA, no swelling etc. Labs normal but I was taking methotrexate prescribed by last dr.
Just went back in Tues, stopped metho, told me no way was this RA.  I asked about Lupus and Anklosing Spond.  Because of the lower back pain and mouth ulcers which I know are not usually part of RA.  He said no way-discussed labs that were positive.  He says "Well my wife's sed rate has been 50 for 7 years and nothings wrong with her." ???? He said that I dont even have enough syptoms to be in a clinical trial he is doing.  He said all these diseases are over diagnosed and pretty much said all these other dr's don't know what the @#%$ they are doing.
He then prescribed me Lyrica which I am reading has horrible side effects.  He was trying to tell me that stress causes psoriasis, well how come when I was on methotrexate I felt much better?!
He was telling me I need to deal with it and maybe see a pain dr coz its out of his scope.
Then the final thing he says is, "Maybe its Sjogrens Syndrome"???????
Anyway sent me for x rays of back and bloodwork.  I am so frustrated I don't want a disease but some thing is very wrong!!
I am hoping to prove him wrong.
I even started crying which I never do, made me feel so belittled and dumb.
Thanks so much in advance I have learned a lot on here you guys are awesome!!  Sorry so long!!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/29/2009 1:57 PM (GMT -7)   
Hi SJJ,
 
You need a new rheumy. This guy sounds like another numbskull doctor. There are SO many out there.  Keep going to new rheumies until you find one that takes you seriously and works with you in every area that is needed - including the pain issues. I went through 3 before I found one that worked.
 
You have lots of positive blood work coming back, and protein in your urine. That should be enough for any rheumy to take you seriously.  Don't let this doctor get to you.  Just fire him and move on! You have to be very proactive and assertive when it comes to autoimmune diseases.
 
Keep in touch with us and learn as much as you can about Lupus, RA, etc.  The more you know, the better equipped you'll be to talk with a new doctor. You'll have more confidence and that really does help.
 
Blessings,
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/29/2009 2:21 PM (GMT -7)   
One way to find a rheumy that "listens more & dismisses less" is to use the chapter locater on lupus.org to find your local group. Then see what doctors are active with that group -- these are the ones who are at least knowledgeable about autoimmune diseases. You can also go to a few local meetings to get a feel for what people have to say about their doctors.

Some drs want to do everything based on lab work --- but these diseases are a lot more than the numbers!!! It's well worth the effort to find a dr who treats symptoms not just labwork!

Hang in there,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 


SJJ
Regular Member


Date Joined Jun 2006
Total Posts : 20
   Posted 1/29/2009 2:31 PM (GMT -7)   
Thanks so much.  I meant that I have had blood in my urine not protein.  This dr says that to have Lupus you have to have organ involvement.  He says labs mean nothing, but apparently symptoms don't either-

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/29/2009 2:58 PM (GMT -7)   
Organ involvement has NOTHING to do with diagnosing lupus.

This dr needs to be shot -- too bad we don't know a 'cause for lupus or we could give it to him!!!

The American College of Rheumatology is the "gold standard" for rheumatological illness, including lupus. Here is a link to their criteria for diagnosis.
www.rheumatology.org/public/factsheets/diseases_and_conditions/lupus.asp?aud=pat

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/29/2009 3:03 PM (GMT -7)   
If your doctor says that to have Lupus you have to have organ involvement, then he needs to speak with Dr. Merrill, Medical Director of the Lupus Foundation of America, who diagnosed me and I had no organ involvement. He should also look at their list of criteria. The guy sounds like he thinks he knows more about lupus than the Foundation and has his own trials to prove it.

You need a new doctor. It may be hard to get a diagnosis but you deserve a doctor who will be respectful and do his or her best to help you. That is preposterous.

Good luck, and do hang in there. We're here to support you, regardless what your dx is.

at
SLE, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis, gluten intolerance.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, tri-est, imitrex (for rare migraines), cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 1/29/2009 3:21 PM (GMT -7)   

 SSJ - Please get another doctor!!!  So many on this forum can relate to your story or have come across some very unqualified and unfeeling (terrible combination) doctors, on the road to figuring all this out.  I stayed with a doctor for far too long who minimized my complaints and made me feel like a nutty whiner.  Time wasted.  You really do need a good rheumatologist.  Listen to your body and the intuition that is telling you something is not right.  You can learn a lot here, and find encouragement - especially for eventually finding a doctor who will listen and test and treat appropriately.  Hang in there and don't give up!

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 1/29/2009 7:17 PM (GMT -7)   
Hi SSJ, I agree with the others, you need to find another rheumy. I know how you are feeling, my 2nd rheumy told me that maybe by the time I was 90 my labs would catch up with my symptoms. I was so frustrated I left his office in tears and set out to find a rheumy that specialized in lupus not just a doctor that treated older people. Sometimes we have to see more than one rheumy to get a proper dx. Some doctors want to see everything in black and white, you need to find one that looks in the gray area too. Here is a link to the criteria list, most doctors use this to help in the dx process. Take care and please keep us updated on how you are doing.

www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=75&zoneid=19
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/29/2009 8:20 PM (GMT -7)   
SSJ

I don't know what too say that the other very intellegent members have not already said! I am really sad that there are doctors out there with that mentality. I want to back up with the others have said and urge you to find another rheumatologist.

There are so many reliable websites out there that explain lupus symptoms and such. I hope you will do some research on your own and see how wrong your current doctor is. It will only benefit you and your health.

Best of luck on your journal.

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 1/29/2009 9:19 PM (GMT -7)   
Sounds like you saw the Rheumy I went to.  We fondly refer to him as dumb-dumb.  He first suspected Lupus and fibro, put me on plaquenil, pred, and imuran.  I stil had pain so he put me on neurontin, didn't do much either.  The last time I saw him, my hands were red, swollen and hot and he says "I'm not convinced you have an inflammatory disease" and took me off everything and told me to try Cymbalta.  BTW, my labs were greatly improved at that visit.  Then after about four days off it all I went into a flare and broke out in the worst hives and fatigue yet.  My primary said that if I don't have an inflammatory disease then somehow I must have some kind of plaquenil, pred deficiency.  He was making fun of the Rheumy and when I asked him if I really needed to go back he said I didn't.  If we need a rheumey consult down the road we'll find another one.  Anyway, good luck on the doctor search, don't listen to dumb-dumb and God bless.

Jennifer

PCP pretty convinced- Lupus , Taking plaquenil,Propranolol,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.   Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


SJJ
Regular Member


Date Joined Jun 2006
Total Posts : 20
   Posted 1/29/2009 9:35 PM (GMT -7)   
You all are so awesome and made me feel 100 X better seriously!!! I really can't talk to anyone about this-my husband doesnt get into the medical stuff and I am just so glad to have you all, when I just checked and saw it the responses, it made me feel great! Thanks. I had read that you dont need organ involv for diagnosis, but he acted like he knows it all!!
I was never so upset by a dr appointment. And I even explained to him my frustration and that we are moving again next summer (military) and I didnt want to start all over. Thanks again! I have learned so much

SJJ
Regular Member


Date Joined Jun 2006
Total Posts : 20
   Posted 1/29/2009 9:38 PM (GMT -7)   
Thanks for the link-it appears I have 5 of those 11 things...I am still so mad and feel so disappointed, I have been waiting for this follow up appt since November.
You guys are great!!

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 1/30/2009 6:38 AM (GMT -7)   
Hi SJJ, I didn't get in on this yesterday but it sounds like my old rheumy and your new rheumy went to the same school. You need to call around and specifically ask does this rheumatologist deal with people with autoimmune disease? Not all of them do. Many only know about arthritis and bone and joint stuff. Unfortunately some dr's have a God complex. It's not nessesary that they have a great bedside manner but you need to be able to ask questions and get answers without being talked down to. Sadly depending on where you live it's very hard to get into an appt. They are all so busy.
Oh I had a doctor pretty much tell me that all other drs were idiots except him. I did what you did and came here completely overwhelmed and feeling lower than a snake. Everyone told me to run don't walk to a new rheumy and I did. Unfortunately 2 years later and 4 rheumies later I'm still looking for answers but at least I am getting better at dealing with the drs.
let us know hang in there. Oh if you don't have a script for your mouth sores you can buy malox over the counter and swish it around in your mouth. It does help.
praying things get better for you soon
hugs
 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


SJJ
Regular Member


Date Joined Jun 2006
Total Posts : 20
   Posted 1/30/2009 7:51 AM (GMT -7)   
Thanks Carol and everyone for your responses. We are moving to Maryland in the summer does anyone know a good rheumy there? Thanks and have a great weekend!!
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