Is my rheumy crazy or is it me?

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nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 10:25 AM (GMT -7)   
Yesterday I had an appt with my rheumy. He's the one who dx me in October with lupus. But my neurologist had spoken with him recently and told me that the rheumy said he didn't think I had lupus!

So I asked him...do I have lupus? He says no, he doesn't think it's lupus....it's something similar to lupus but not lupus. I said what is it, some other CTD? He just said it's "autoimmune", whatever it is.

The problem is I was the last patient of the day and he wanted to get out of there because it was after 5 o'clock. So that was all he said.

I guess it's a good thing to NOT have lupus, but why is he saying this and what is it then?

If it walks like a duck, and quacks like a duck, is it a duck? or something else???? rolleyes

Has anyone else had problems with diagnosis like this??

JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/21/2010 10:42 AM (GMT -7)   
lol.

We *all* have problems with diagnosis -- mostly because lupus can mimic so many other autoimmune diseases, they like to save the lupus dx for the last.

As long as they are treating the symptoms appropriately, the non-dx is *good* if you are shopping for insurance, but *bad* if you are trying to get disability.

The secret is to make sure you are getting proper treatment, and not self-diagnosing. It sometimes seems like nothing more than walking a very thin line!

Hang in there -
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 10:49 AM (GMT -7)   
Thanks Lynnwood....yes, I'm still on plaquenil and prednisone and Imuran so I guess that's what's important.

I'm not trying to apply for SSDI yet, but that may happen in the fairly near future if I don't start feeling better now that I'm being treated for Lyme disease.

Oh well, I do have LOTS of other diagnoses! LOL! smilewinkgrin
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 1/21/2010 11:21 AM (GMT -7)   

Oh, I just love that line "it's autoimmune, whatever it is" ---- which I've heard from my rheumy as well.  She also told me that fibro could not cause the high positive ANA (1:1280) - and then when that came down (1:320) after being on Plaquenil for a year, she reverted to "it could just be fibro".  I don't have any other blood markers except for high CRP.  It's a wild goose chase, it seems.  I think the worst rheumy's are the ones who resent that more than their patients. 

Lucy


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
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 11:49 AM (GMT -7)   
Hi Lucy,

Wow, that's a very positive ANA you've got, even after a year on Plaq! I'm surprised that your rheumy is saying it could just be fibro!

My rheumy is also very quick to blame fibro for symptoms too....he is a fibro specialist so maybe there's a bias there?? :)

I know he runs a fibro research clinic out of UCLA.

Oh well....it sounds like I'm not alone!

Take care,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 1/21/2010 11:55 AM (GMT -7)   
Girl!  I know your frustration.  Nobody really wants a lupus diagnosis, however, it is so frustrating to be on all these meds and have all these problems and not know what you're up against.
 
When I first went into kidney failure the doc said I had lupus or "something similar."  The doc who interpreted my first kidney biopsy said it was def. lupus.  "Not so" said my nephrologist because I had a neg. ana.  Anywho...five years and four positive biopsy's later...I was firmly diagnosed! 
 
I'm glad you are being treated.  Don't hesitate to get another opinion if it will make you feel better!  "Classic, text book lupus cases are not the norm."  Judy

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 12:01 PM (GMT -7)   
Thanks for relating your experiences Judy. That's part of my problem too....my "positive" ANAs haven't been positive enough, just at the indeterminant or equivocal level.

I guess I could try for a second opinion...but I'm just so tired of doctors right now! :)

(((hugs)))
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/21/2010 1:28 PM (GMT -7)   
I have no idea what to say because I went from it's all in your head to lupus just because I found the right doctor. I never had any inbetween. Now I am worried my new rheumy will undx me but he seems to be pretty cool about believing my old rheumy was right. I just hope you continue to get treatment. A second opinion never hurt either.
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


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 3:04 PM (GMT -7)   
Thanks redrose! I probably will get a second opinion at some point.

I'm actually on my third rheumy right now! :)

The first guy dx me with fibro, but told me flat out I don't have RA or lupus. The second agreed that I had fibro, but also gave me a dx of RA because of xray evidence (I'm seronegative for RA)...and also told me I don't have lupus. My current rheumy agrees that I have fibro and RA, but told me in October that I ALSO have SLE. And is now backing away from that diagnosis. (???!!!???)

So do I need a fourth opinion? Possibly.

As I've been thinking about this mess, I've realized there's always the possibility that some of my AI diseases will go into remission as my Lyme disease is treated.

I've been absolutely flabbergasted by some of the stuff I'm learning about Lyme disease! Before my dx, I had no idea it was so sneaky, that it could both trigger AND mimic AI disease and fibro, and that it's reached epidemic proportions in the US.

I should share this video with all of you just as a FYI, because absolutely everyone should know this stuff about Lyme disease (how easy it is to catch nowadays and what it can do to a person):

www.youtube.com/watch?v=4ALgOikmjCw

This video is absolutely frightening....and true. Please pass it on, especially to people with kids. Every parent should watch it.
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/21/2010 3:09:31 PM (GMT-7)

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