PDA

View Full Version : Diagnosis?



widebody
06-29-2009, 12:07 PM
Hi all,

Newbie here -- just diagnosed (maybe - more to follow) last week. This came after a long period battling intense fatigue, sore joints, and a brief fever...PCP ran a battery of tests and found positive for DS DNA (13), positive for ANA, and negative for rheumatoid factor. In addition, my platelets and white blood cells were low.

So, she told me 'it looks like lupus, but you need to see a rheumatologist for sure.' Luckily, I'm in one of the best areas in the world for health care, so I'm going to Duke rheumatology - but not for another month.

I'm male, 44, and also a type 1.5 diabetic with some other endocrine gland involvement. It's an unusual type of diabetes; over time, most or all of the endocrine glands are attacked by the immune system and shut down.

Which makes me wonder if this lupus 'diagnosis' is very solid or not...my research has not given me a clear answer on how specific the DSDNA test is for lupus.

I suppose, in a sense, it's not that big a deal - the rheumatologist can fill me in in a few weeks, but for me, ignorance is NOT bliss. I'd like to know if this is definitely lupus or could be something else. Anyone here have any thoughts?

Also, does the fatigue ever go away? I mean, is it a 'flare' symptom, or is it just part of the package? Cuz I gotta tell ya, it sucks :) I sleep 10-11 hours/day now (vs. 6 just a few weeks ago) and am more tired than ever.

Other than that, no problematic symptoms - the joint pain goes away with ibuprofen, and though I've been careful, I don't seem to have sun issues.

Any advice/thoughts appreciated, thanks.

Oh, and for any other men - yeah, it sucks getting what people think of as a 'women's disease' but I don't let it bother me...I figure we're 'the few, the proud, the 'Lupes'. So I've started referring to both the disease and myself in the third person as Lupe (pronounced the spanish way - loo-pay). Makes it kinda fun.

And I'm used to the diagnostic stigma -- for about four years, it was assumed I had type 2 diabetes, even though I was 38 and in very good shape when diagnosed. I REALLY hated the thought of having an 'old, fat person's disease' (which, sorry to say, is the perception of type 2) so I was actually kind of releived when I got a clearer diagnosis. So I feel where a lot of men are coming from. I've gotten to the point where it's 'meh'. I just don't care what others think. THey don't have to live with it, I do. :)

Thanks for the great posts here - i'm learning a lot.

Oluwa
06-29-2009, 12:44 PM
Hi WideBody....

Signs and symptoms of a Lupus flare...

Be aware of one or more of these symptoms:

Persistent fatigue out of proportion with what you would usually expect
Persistent weakness
Aching all over
Fever, which may be slight to high (you can check your temperature yourself)
Persistent loss of appetite
Involuntary weight loss
Increasing hair loss
Recurring nose bleeds
Sore on the roof of the mouth, which burns with spicy foods
Unexplained skin rash anywhere on the body
Hives
Sores on the skin
Painful joint(s)
Swollen joint(s)
Stiffness of the joints when waking up in the morning
Chest pain which increases with breathing
Shortness of breath
Coughing up blood
Persistent unusual headache
Nausea or vomiting
Recurring or persistent abdominal pain
Persistent, increasing swelling of the feet and legs
Puffy eyelids
Blood in the urine

Lupus is often a self-repetitive disease: watch for a recurrence of the symptoms that you experienced when your disease started.


Anti (ds) DNA is highly SLE specific...the average literature reads about 70%....

Indeed, it does suck. Fatigue is part of the package...varying degrees of it. I've never been in 'remission' but I think fatigue is not included in that package deal.

As of late I am in a mind numbing fatigue. I sleep 7 hours and within a hour or two of rising I need a nap. I try to stay awake and putz....

I welcomed you on 'your profile' page...but again welcome...hugs.

Be well...
Love,
Oluwa

widebody
06-29-2009, 12:58 PM
Thanks for the info and the kind words, Oluwa.
I have/had a LOT of those symptoms. Interestingly, I also had a really bad reaction to sulfa drugs the only time I ever took them; I had shingles three years ago, and more recently I think I had Fifth disease. All these events now, in retrospect, look like they could have contributed to lupus. Interesting.

Really appreciate the warm welcome and support!

Oluwa
06-29-2009, 01:04 PM
You're welcome, WideBody...

Sulfa drugs and lupus..not a good combo. Sends many of us into a flare. Sorry you had to find that out through experience...

Be well...hugs.
Love,
Oluwa

Delphinia981
06-30-2009, 03:34 AM
WideBody...you're a hoot! So glad to have you here!!

crmj1183
06-30-2009, 06:54 AM
Wow, I just learned something from you widebody, I was given sulfa drugs by few different doctors last year and My lupus went into overkill, and I was really sick and hospitalized nobody knew what it was. And it had gotten to the point where they would precsribe me something an d I would be hesitant to take it because I was constantly having a reaction, well after doing my own research all of the drugs had sulfa in them and they were literally killing me. So up until you and Oluwa's discussion I thought it was just me, but other people with lupus have probs with sulfa. That is very good to know. As far as the fatigue its apart of the Lupus package but its not all the time at least not for me. Your body will definitely tell you "hey lay it down" when you are in desperate need. Ive had lupus since I was 17 and Im now 25 so Ive lived with it for a while. My lupus does go into remission at one time i went 3 yrs without any symptoms. Ive only met one other guy that has lupus. Well, anyway Lupe, lol. Nice to meet you and I look forward to chatting with you.