lupus or not lupus

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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/21/2010 5:29 PM (GMT -6)   
Ok I saw new rheumy today. We discussed the others I have seen and the different dx's they gave me. My internist keeps sending me to doctors because she wants one to agree with her that I have lupus. No one but her does. However what they say and he said today is I have primary biliary cirrhosis, scleraderma, and fibromyalgia. He gave me some samples of lyrica and said it was for "skin pain" confused . I'm beginning to think they are making this stuff up. Oh he sent me a whole bunch of stuff to fill out about a month ago and requested all my labs. So I guess that had something to do with his dx. I take enough pills I should never have to eat again. 23 different ones but 52 a day. I do not want to ever see another pill as long as I live! Oh yeah the rheumy said my doctor was welcome to come down and set in on any of their meeting and explain to them what lupus is! and tell them they are stupid. turn He said mother nature will do to us what it wants and all we can do is the best we can do to stop it. I feel like he was only missing the sandles and love beads.
my day scool
nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis.
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 6/21/2010 7:15 PM (GMT -6)   
lol maybe your internist needs to listen if all the rheums agree. My pcp just goes along with whatever my rheumy says which is nice
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, Sj√∂gren'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

New Member

Date Joined Jun 2010
Total Posts : 8
   Posted 6/21/2010 10:08 PM (GMT -6)   
You didn't give us any info about your bloodwork, symptoms, etc. so we can't really give you our two cents. :/ I'm sorry you're having such a hard time getting diagnosed though. Sometimes rheumatologists are very hesitant to diagnose. It took me awhile to find a rheum willing to diag me with lupus two years ago, and now the diagnosis has switched to MCTD, but no one was taking me seriously two years ago except that one doctor. You'll be diagnosed eventually, try to hang in there until then. :(

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 6/22/2010 9:30 AM (GMT -6)   
Carol, getting a diagnosis can be one of the most frustrating things. Bloodwork can wax and
wane. The meds we take can change our bloodwork. For diagnosis is MCTD...
initially I had very high titers of RNP, my last bloodwork my RNP was within normal range
but I still continue to flare. All my clinical symptoms point to MCTD. Bloodwork is not always
reliable. My rheumy explained that there are never two cases the same, not everything
follows textbook. The same goes for meds...we all tolerate medication differantly.

I guess the biggest thing is finding a doctor that you trust, will take the time to explain and
answer your questions. Hoping you get the best care possible!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 6/24/2010 3:34 AM (GMT -6)   

Did you remember to go in with your homework? Your list of past diagnoses, whether or not autoimmune related, all the meds you take, and your list of questions? I know we talked about this because you often are frustrated at not getting your questions answered.

I remember that since I've been talking with you there has been a question about whether or not you have lupus and one of the things the transplant team wanted to do was find out. If you do have lupus, remember, they won't agree to go ahead with the transplant.

But what you described to me as bad news sounds to me like good news. You said to me "I'm too sick to live w/o oxygen but not sick enough to need a lung transplant." The fact is, you yourself know that you're always going to have to need to use oxygen. No news there. But if you aren't sick enough to need a transplant, isn't that the best news in the world?

Let's have a chat when I'm up to chatting. Now I'm kind of just blubbering.

I truly believe that if you'll follow up with this doctor and do exactly as he says, you might get some answers. Maybe not the ones you want, but I think he'll shoot straight with you.

This is such a frustrating path to travel down. Believe me, I know. I just hope that you'll give some doctor a chance, whether it be this doctor or another one. You didn't say, did you have a good raport with him? What I like the most about him is that he's a good talker and shoots straight. He also explains things well. My previous rheumy would change my scripts around and tell me to come back in x number of months. This guy actually talks to me about what's going on.

I know how hard it is to get to the City for the transplant team meetings, but I suspect it's imperative that they continue to monitor you closely to find out if you're going to be a good candidate for the transplant. But girl, you're going to have to show them that you're doing what your docs tell you what to do. Otherwise they're likely going to pass on the transplant.

By the way, what's going on with your Home Nursing Care? I hope they cloned Cathy and sent her back out again. She's so great and knows how to make you laugh.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

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

New Member

Date Joined Jun 2010
Total Posts : 3
   Posted 6/24/2010 10:36 PM (GMT -6)   
It's good you don't live in Idaho. I've been out here a while because of a family situation. Normally I'm back east.
Out here lupus is nearly never given as a DX even though I have 8 of 11 symptoms they acknowledge as "potentially lupus".
Since I have fibro, they like to tell me that it is "all in your head". That they can't do anything to help and meds will only make me a druggie. It took me nearly forever to convince them that I needed my medications I did have refilled.
It's strange here, I'm glad to know it's not the only place finding a DX is difficult. But I miss having the good doctors I had while I was out in Virginia and Tennessee!
I hope all turns out well for you. Hoping you can get a dx and proper treatment soon.
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