Mystery diagnosis!

[Ski4000]

Hello

My husband has been suffering from something for 3 years now. There are many symptoms and I'm hoping someone can offer some insight as to what he should be asking and what he should be tested for.

My hubby is 34 with no remarkable medical history. He used anabolic steroids briefly back in college.. That's about it. The onset of symptoms began about 3.5 years ago w the birth of our first son. Every couple of months he'd come down w flu like symptoms. Fever, very swollen lymph nodes and frequently a body rash that would accompany. The illness would last a few days then dissipate.

Occasionally his joints would flare up. Sometimes his wrists and fingers. Most often one or both knees. Lately he has been unable to move his neck or turn his head. He describes the pain as sharp and internal- not muscular.

His latest fever and spinal/neck pain- MD prescribed Ceftin. The rash came back and then a new alarming symptom developed- Dermatographism. I'd never heard of it. The allergist strayed he was highly allergic to the Ceftin and this was causing the rash. Basically if he scratched any area of skin a red line would appear right where he scratched. It will welt up and be painful and would remain for hours.  You could basically draw on him and it would stay.

7 weeks later and rash and Dermatographism remain. He's extremely fatigued and unable to turn his head. Went to Dr and again said it was Ceftin allergy. It really does not make sense that this would continue so long.

We are very confused and want some answers. His maternal grandfather was dx'd w lupus at age 30. I thought for sure this had to be the diagnosis. He has all the symptoms! The blood tests came back negative for everything.  We are so confused.

What can we do to get other testing?

[zigsmom]

I tested negative for years but had several of the other criteria. It really does sound like your husband has Lupus. Since it can be genetic, I would get him to a Rheumatologist as soon as possible. This is the only doctor that really make a determination. Please keep us posted.

[Foggy2]

I like your mnemonic for SLE. :-)

As I said in my post, Ski4000 needs to see a Rheumatologist.  I hope she does.

[TheLightSeeker]

If you look at the diagnostic criteria for SLE, established by the American College of Rheumatology, one only needs  any 4 out of 11 symptoms/criteria to be present simultaneously or serially on two separate occasions, for SLE diagnosis.
The following mnemonic is useful for memorizing these (wikipedia):
SOAP BRAIN MD (S=serositis, O=oral ulcers, A=arthritis, P=photosensitivity, pulmonary fibrosis, B=blood cells, R=renal, Raynauds, A=ANA, I=immunologic (anti-Sm, anti-dsDNA), N=neuropsych, M=malar rash, D=discoid rash)

As you see, many of them have nothing to do with blood tests, which (blood tests) again may not be sensitive enough to be entirely accurate.

In conclusion, his MD can establish if ANY four  of the SLE  diagnostic criteria/symptoms are/were present for an SLE dx, or even better,  ask for a referral to a Rheumatologist to establish this.

Hope this helps.
Niko

[Foggy2]

Has he seen a Rheumatologist yet?  If not, this type of doctor would be able to assist in working him up for lupus or an autoimmune disease.  Bring all previous labs, testing, and records that were done.  Let the doctor know lupus runs in the family and they can do testing on him.

If he is allergic to Ceftin:
Do not take Ceftin or other cephalosporin antibiotics, such as:
- cefaclor (Raniclor);
- cefadroxil (Duricef);
- cefazolin (Ancef);
- cefdinir (Omnicef);
- cefditoren (Spectracef);
- cefpodoxime (Vantin);
- cefprozil (Cefzil);
- ceftibuten (Cedax);
- cephalexin (Keflex);
- cephradine (Velosef)
- penicillins,
- or if you have:
- kidney disease, liver disease, a history of intestinal problems, such as colitis;
or diabetes.