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So we went to the specialist....

Posted by on Jul. 27, 2012 at 9:24 AM
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 My husbands male so obviously, she wanted to do blood work. A complete work up because "men just rarely get it". Poor guy is always getting stuck. Anyhow, she called back with the results. She said everything was negative! Wth? I went over his old labs. Once he had a positive ANA, one he had one that was homogeneous, but only 1:160. There, but low enough to give him a negative. Hes got every symptom and had been diagnosed, yet now hes being told he doesn't have it from someone who is supposed to be an expert. Its alot of mixed feeling really. Part says WOOHOO, this is a good thing. The other part says well WTF is going on then!! It sucks not having answers. When he got his lupus diagnosis it was saddening, but we FINALLY had answers. Now, were back at square one. Really frustrating. I found something called chronic fatigue syndrome, or CFS. The symptoms mimic those of lupus, but nothing will show on a bloo test. Going to bring this up with his doc. at his august apt. It mentions the only relief (for CFS) really is from low doses of codein. Coincidentally enough, at his last visit with his doc she gave him an oxycodone script. And, it helps tremendously with his pain... No anti-inflammatories work.

Hope to get answers soon.

I suppose I will leave the group since he "no longer" has lupus. I wish you all the best of luck!

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by on Jul. 27, 2012 at 9:24 AM
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Replies (1-8):
jdouglas111
by Member on Jul. 27, 2012 at 11:47 AM
Dont leave, it is normal to get diagnosed then undiagnosed. It takes years to get a diagnosis in most cases and every doctot will tell you something different. Does this doctor know he had a positive ana. Who did the original diagnosis?
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JDmommyJD
by Member on Jul. 27, 2012 at 12:04 PM

 It started when he was having alot of bad symptoms- sever joint pain, fatigue, rash, headaches etc.. We had no clue what it could be and made an apt with his primary. After explaining the symptoms, and her realizing 2 of his maternal grandmothers had lupus, she ran some test. She came back with: His liver was enlarged, he had a positive ANA and a high SED rate. She said shes pretty sure he has lupus and needs to see a rheumi. He made the apt- took months to get in. The rheumi said shed run her own blood test and then never got back to him. His primary said well fine, she would begin treating him herself, gave him teh diagnosis and started the plaquenil. (this whole thing, from start to primarys diagnosis took about 4/5 months- all the while his pain steadily got worse). She wanted him to see another rheumatologist. We JUST got in with the specialist and she ran her own test. She just called to say everything was negative and to just seek pain management. Ugh. I called the old rheumi's office and had them fax his blood work to me since we never heard anything. (apparently its bc she was preg- who knew, and is out until september with her maternity leave!) I see it says homogeneous ana 1:160. Now technically an ANA that low would constitute a neg. But I dont get why it says there is a homogeneous pattern. Its all so confusing.

Quoting jdouglas111:

Dont leave, it is normal to get diagnosed then undiagnosed. It takes years to get a diagnosis in most cases and every doctot will tell you something different. Does this doctor know he had a positive ana. Who did the original diagnosis?

 

JDmommyJD
by Member on Jul. 27, 2012 at 1:30 PM

 I just looked at his first labs, the one his primary did that made her diagnose him.. his ana was then also 1:160 and speckled.

Everything im reading says lupus. How could this latest specialist say he was negative for EVERYTHING?

I dunno what to do. He was gonna quit taking his plaquenil but now I dont know if thats a good idea. Maybe THIS time he happened to have ok results but the other 2 were NOT ok. It HAS to mean somehting, I would think..

mawfia
by Member on Jul. 27, 2012 at 10:06 PM
That is crazy. it also worries me as I'm just starting out with my own diagnosis.
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jdouglas111
by Member on Jul. 27, 2012 at 10:43 PM
1 mom liked this
I have tested positive and negative both on the ana. I have seen 4 different rhuems, 3say lupus one told me I was perfectly healthy. I would go back and talk to the primary doc and explain what happened and see if they can send you to a diff rhuem.
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chickensmommy
by Member on Aug. 16, 2012 at 5:51 PM
Um, I always have to get complete bloodwork done even though I was diagnosed with SLE years ago. It's pretty common.
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momof3inCT
by Member on Aug. 17, 2012 at 12:12 PM

I was positive for 5 yrs and last year was NEGATIVE my dr had told me that your body can go into a temporary LIKE remission but not to be fooled that it can flare again some people who have a "mild" case as they call it can have this happen, for me I had gotten pregnant and I TRUELY believ the pregancy hornones block tests maybe not symptoms b/c most of my symtomsare acting up right now but I started back on my meds and and hoping for some improvment! I meant to ask the dr on my last appt about people who dont TEST for things b/c I know I test negative for allergies which I clearly have so is this one of those things too?

JDmommyJD
by Member on Aug. 17, 2012 at 12:27 PM

 I also wonder if because his numbers are low, and  hes MALE, the rheumy gave him the negative result? Every rheumy we tlked to sad well, youre male, so its highly doubtful. Gah!

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