Lupus? Any Advice??

[gemini2tru]

I have a couple of questions about this. I had 2 positive ANA tests and 2 negative. The drs all mentioned lupus. It started when i couldnt use either of my hands, even to lift a drink to my mouth and my arm dr checked my ANA and asked if i knew of lupus. (then followed was hemotologist) not ONE has said it for sure! A year ago - i took all i could take with my lungs- it was shatp pain when breathing deep and odd 'cracking' type feeling when i tried opening them in mornings. The pain has never left but has changed to entire rib cage feeling as though i had been beaten with a bat- sometimes sharp pain but always pain. This past wknd i had 5 diff episodes of severe chest pain. always on right - same side w/ribs. I have had stress tests, so Im doubtful its actual heart. My family physician doesnt believe i have lupus and my rhuemotologist says ' you more than likely do'. Can any1 give me any advice ? I really cant cont playing tennis and doing my normal hobbies in this kind of pain.

[jellynpain]

Hi,

I am in a similar position, but different (that sounds mad!).

I have a autoimmune diagnosis but the specialist for that said I have many symptoms over & above. They fit more with Lupus.

To cut a long story short I am going to Lupus Specialist to hopefully get a yes or no on this.

Have you considered this?

X

[gemini2tru in reply to jellynpain]

I have. In my town, only 2 Dr's deal with Lupus. The rheumatologist says he is UNSURE of the definite diagnosis because I had 2 positive -when I couldnt use either hand (no swelling/redness) ..I couldnt even get a drink to my mouth and on 3rd day I finallyyy could use 2 hands to put car in gears to go to dr. I also had 2 negatives at a later time. The Rheum. wants to put me on Methotrexate just in case it 'helps'. I walked out bc that is a big drug w/side effects. Im finding after a solid year of pain in right lung and all of rib cage and bouts of chest pain. It is disrupting my life. Im unsure of where to go from here- I would like a definite diagnosis and if not lupus, then what???? Its a question I have also- do I need to go to a larger hospital or something to get a SOLID answer? I have considered alot over the past year. The pain is becoming too much and is esp hard when there is no visible proof of it. thank u for responding

[jellynpain in reply to gemini2tru]

If Dr's are unsure re Lupus get a referral to a main Lupus Specialist Unit, not a standard Rheumy. If they eliminate Lupus then you can go to your go and ask for further tests. You may have to push. Be really clear of your symptoms and how it's causing day to day problems.

X

[gemini2tru]

Thank u. I actually see my family physician today. I need to write down all of my symptoms- even though they change somewhat, it's alwayssss something! It's exhausting physically and mentally. I'm 39 and my stepmom can run circles around me on my bad days and on good ones I can almosttt keep up. It's just frustrating. thank u and I will ask my Dr to send me to Duke University if all other options fail. He has referred me back to the rheum, whom I dropped because he could give me no DEFINITE answers but wanted me on chemo pills. I have since found out - that is standard procedure. tyvm

[abby1649]

Lupus is an insidious disease. It mimics and pretends to be other diseases (MS, RA,Fibromyalgia and many other auto immune disorders). I think it's better to assume Lupus and treat it. Better than doing nothing. I also read up on RA treatments. Many also work for lupus so better than doing nothing. Best of luck and try to keep a positive attitude.

[Hidden]

I think you need to be referred to the chest clinic for a lung function test and assessment, this might lead to some treatment. Don't be fobbed off, and be firm but polite with your request. Good luck.

[nerossa]

What are the diagnostic criteria for lupus?

To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four

To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list either at present time or sometime in the past, it is likely that you have lupus.

(1) Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly

(2) Discoid rash – a rash that appears as red, raised, disk-shaped patches

(3) Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse

(4) Oral ulcers – sores appearing in the mouth

(5) Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed

(6) Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)

(7) Kidney disorder – persistent protein or cellular casts in the urine

(8) Neurological disorder – seizures or psychosis

(9) Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count),

lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)

(10 Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies

(11) Abnormal antinuclear antibody (ANA)

(taken from lupus.org/answers/entry/lup...

So, I am NOT a doctor, but in your comment I see numbers, 5, 6, 10, and 11. Sounds like Lupus SLE to me. Also a positive DS-Dna (or anti-dna) is strongly suggestive of lupus nephritis. I would persist and demand a diagnosis. I would ask for Plaquenil and get some of this under control. I would get your thyroid tested while you're at it. No one thinks about your health once they get home at night but you - be your own advocate. Your symptoms do not have to occur all at once. And some symptoms (like Malar rash) you may never have. That's Lupus - everyone's experience of it is unique.

Good Luck

[misty14]

Hi Gemini

Sorry to read you are having a tough time. Have you had the chest pain checked out in A&E? If it worsens you should and it could lead you to a Rheumy referral. Lupus can affect the lining of the heart and lungs and affect the ribs and it can be so painful!. Lupus is such a tricky illness to live with and diagnose and you have to be prepared to fight. I haven't had a definitive diagnosis in 29 years so u may not get one either but what is important is finding a Rheumy who is prepared to treat you regardless . It's good that that Consultant wanted to put you on Methotrexate, it's a good drug for the arthritis. Scary I know but the dose used is tiny and you'll be well monitored with monthly blood tests, fortnightly when you start it. Hope I've helped and good luck?. X