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Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 3/11/2010 11:05 PM (GMT -6)   

 My rheumy has an excuse for everything.  My positive ANA could be false (It’s been positive twice and pretty high)

 My muscle aches sound more like fibro even tho I don't have any of the pressure points. My hair is falling out terrible! He says with Lupus I should have bald spots.  I showed him a really good picture of my butterfly rash ( what else could it be) he says it's to close to the side of my nose what?!!!!! My weak knees could be age. I said so you think it's normal for me to need help out of the tub at 47? he said it could be my weight mad  I am 237  lbs and that's 10 lbs less then I saw him a month ago because when I am so sick! With pain I have no appetite. He wants to treat me for fibro for 4 weeks to see if it helps. He said I may be depressed. I told him I took antidepressants for 3 years along time ago. I am NOT!!!! depressed however I may get there mad  this is all so frustrating. He did take some more blood to test. I don't know what he has left to test but we'll see.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/11/2010 11:21 PM (GMT -6)   
Oy! Sounds like you definitely need a second opinion!

Is he really saying everyone with lupus should have bald spots? That is totally insane and idiotic and I would suggest getting as far away from a dr that says that as humanly possible.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 3/11/2010 11:23 PM (GMT -6)   
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lunesta, cymbalta, vitamin D, Calcium, Multi Vit.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 3/12/2010 8:27 AM (GMT -6)   
find another doctor, this one sounds like he could care less what is wrong and has already made up his mind.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 3/12/2010 1:28 PM (GMT -6)   
I think your right. I will look and see if there is a lupus specialist around here. I know we are very limited.. Thanks Guys

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 3/13/2010 3:10 PM (GMT -6)   
I hope you find a new doctor soon that will want to help you feel better. Hang in there and keep us updated. You will be in my thoughts and prayers.


New Member

Date Joined Mar 2010
Total Posts : 5
   Posted 3/13/2010 3:28 PM (GMT -6)   
Yes! Get another doctor!! You would be surprised how good it feels to have a doc that feels like hes on your side! They are out there!! Many of us have gone through several.

New Member

Date Joined Feb 2010
Total Posts : 13
   Posted 3/14/2010 6:55 PM (GMT -6)   
It took me three Rhuemy dr till I had a good one!

Regular Member

Date Joined Mar 2010
Total Posts : 20
   Posted 4/4/2010 12:19 AM (GMT -6)   
Before my Hashimoto's was diagnosed my GP told me "it's just you're age", "it's depression", "it's probably a virus" and the best response of all was "I don't have time to look at all these problems on the list you wrote". When my hair came out in clumps he finally sent me to a skin specialist who referred me to a physician. Success!!! I now have a new GP

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 4/4/2010 10:02 AM (GMT -6)   
tibby2 said...
"I don't have time to look at all these problems on the list you wrote"

What a quack!!!!

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 4/4/2010 6:06 PM (GMT -6)   


You are not alone.  I just had my long awaited appointment with my second rheumy, and I feel like I fell out of the frying pan into the fire.  He also wants to blame everything on my fibro, and claims that the ANA (1:1280 before Plaquenil) could be positive from that alone.  My CRP (3-4 times over the top of the range) is meaningless because he prefers to look at the sed rate, and mine is relatively normal.  My skin reddening and rashes with sun exposure don't count either, because they would have to be raised and very itchy.  Mouth sores would have to be nickle sized and refuse to go away without medicine, and hair loss is inconsequential unless you have quarter sized bald spots.   My fatigue, joint and muscle pain, low grade fevers, and on and on.....all fibro.

My first rheumy suspected lupus developing, and dx'd UCTD, but began to doubt (I think) my symptoms because, despite my highly positive ANA, my CRP and sed rate were always normal according to her lab.  I began seeing a doctor at the University who identified Celiac disease, and his labs showed CRP consistently through the roof over a 6 month period along with the positive ANA.  One of the reasons I decided to move on....

New rheumy didn't want to do any bloodwork, and wanted me to start walking 30 minutes a day.   Why didn't he understand that if I could walk 30 min. a day, I probably wouldn't have been sitting in his office?  He Rx'd Nortriptyline to help my sleep and pain, and come back in 5 mos.  Oh, and keep taking the Plaquenil.  Huh?  Plaquenil doesn't treat fibro.

I am so frustrated by this....disheartened may be a better word.   I waited months to see this doctor, flaring all the while,  and it turns out I've only gone deeper into "the woods".

Good luck to everybody looking for a good rheumy.....they seem few and far between.  And while I know enough to be very grateful that I don't have nickle sized sores and quarter sized bald spots, or other obvious organ seems that is what is required for a diagnosis.   Is that the reason it takes so long?  The simmering pot has to finally boil over?  Really - I don't care what the heck it is - I just want to feel better and hang on to some sort of normal life.

Sorry to ramble on so.....small problems compared to so many of you....wishing everyone the best.


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins

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