Please give your thoughts on diagnosis...

alli sunshine

Regular Member

Joined : May 2009

Posts : 40

Posted 11/1/2009 8:35 PM (GMT -6)

I have posted here in the past. Quick review- Raynauds, anemia, gastoparesis, high ANA test, pain in joints, particularly feet, elbows, fingers, strong family history of RA. Sent by primary doc to rheumy. He ran dna tests for lupus which came back negative. Wants me to see a podiatrist, which I have been slow in scheduling, but will schedule this week. I saw my primary doc this week because even though I had a uterine ablation to try to help the anemia, I am still feeling exhausted. She checked my hemoglobin, and it has hardly increased. So, I am back on iron again. She said that in the note from my rheumy, he said that while the lupus tests were negative, he suspected something was brewing due to all the other factors. Meanwhile, my Raynauds has really flared in both my hands and my feet. Truly, it hasn't been this bad in a long while. My feet are bad, too, and my stomach issues are flaring as well.

I guess here is my question. How do you know when you have something? I feel crappy a lot of the time, like I am getting the flu, but it comes and goes. I guess another question is, how long can things be "brewing"? I just want some answers, and I feel like I'm not getting any.

Thanks for any thoughts. Sorry to be a downer- not having a great day.

PattyLatty

Veteran Member

Joined : Mar 2006

Posts : 2608

Posted 11/1/2009 8:40 PM (GMT -6)

Sunshine,

You ask a tough question, but it's the way I feel off and on - like I have the flu, but I know it's not the flu. There's unfortunately no answer to your question about how long can things be brewing. My lupus "brewed for years before my labs became positive, but because of a family history and friends with lupus, I was 95% sure that's what it was. But my "flu-like periods" were infrequent - once or twice a year and only lasted for a couple of weeks. I wish I could go back to those days!

So sorry you're not having a great day, but know that you are not being a downer. I just hope, as you do, that you get some answers and some relief.

Pat

_{SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.}

_{prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex}

lucysgd

Veteran Member

Joined : Jun 2008

Posts : 675

Posted 11/2/2009 10:29 AM (GMT -6)

Hi Sunshine -

I too can really relate to the fluish feeling - only it hardly ever really goes - it's just that some days it isn't so pronounced. I've been "brewing" for 3 years now, with lupus suspected as the main component, but it hasn't shown up in blood tests - just highly positive ANA and elevations in CRP, liver enzymes and the like on occasion. I know how badly you want answers - it seems like if you could get some, you could get on with your life......at least that's how I felt. I was finally put on Plaquenil last Dec. and have been trying a Gluten Free diet for 2+ mos. There have been some benefits - one of which is that my ANA test turned up negative a couple weeks ago for the first time in years. Do I know what that means? Not really - but I'm putting it in the plus category.

I hope you get some answers soon. Really paying attention to what your body is feeling by figuring out what triggers what, and what helps soothe and/or prevents flaring is helpful. Sorry you're having a bad day - hope it improves and you find the answers and relief you need. Hang in there -

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}

crazykitty

Veteran Member

Joined : Jul 2009

Posts : 4796

Posted 11/2/2009 1:19 PM (GMT -6)

Hi Sunshine, Sorry you are hurting. Trying to get a diagnosis can be so frustrating.
Hang in there!

Have you been put on a calcium channel blocker for you Raynauds? I am taking Diltiazem
and it has really helped with the pain and achiness in my hands and feet.

Hope you find some relief soon!

Hugs

Robin

^{MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative}

^{Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia}^{MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins}

BumbleBee1

Regular Member

Joined : Oct 2005

Posts : 130

Posted 11/3/2009 4:39 AM (GMT -6)

Hi Sunshine

Although the anti ds DNA antibodies are one of only four specific criteria for lupus they are absolutely not essential! Only about 50% of those who have lupus have these antibodies. If a doctor doesn't want to diagnose SLE because there are no specifics for it, he can diagnose UCTD, Undifferentiated Connective Tissue Disease. That simply means there are no specifics for lupus or any other connective tissue disease. The important thing is to be sure that the symptoms are due to autoimmune connective tissue disease and not a completely different sort of disease. UCTD is a perfectly good diagnosis that usually stays the same, meaning specific symptoms or worsening disease do not usually develop. It is a much better diagnosis than SLE because an SLE diagnosis has serious implications on insurance.

It is not reasonable not to treat as lupus just because anti ds DNA has not been detected . The ACR Criteria list is absolutely clear about this. The high positive ANA is all that is needed.

Maybe you could get a second opinion?

All the best
BB

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