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Old 11-19-2008, 03:06 PM   #1
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murphmom HB User
Now What????!!

Hi Guys, I am new here and not sure who to turn to. I have been experiencing fatigue, really aching joints (especially in hands) all over. Sometimes I feel like I am comming down with something but it goes on for a couple of days.

I went to my regular dr and he tested for RA and Lupus. My ana test came back positive so I pursued it with a rhuematologist. He ran a whole bunch of test. My ana came out positive again ( 1:35 with a speckled pattern)and I had a low c4 complement test.

He gave me a pain killer and said goodbye!! Didn't say I need to do anything else, he didn't think it was Lupus. Why do I feel so crummy and why if I have all these symptoms and test results do I not have a diagnosis of Lupus?

Should I do anything else or just live like this popping pain pills when I feel Bad?? Any help or input would be appreciated.

 
Old 11-20-2008, 02:57 AM   #2
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Re: Now What????!!

Murphmom, hi. In your shoes, I'd first get copies of your bloodwork, to start building your own file. In case you have to try other doctors, you'll have your old tests available (not that you have to vocalize that!).

You could borrow lupus hardcovers from your local library. Dr. Daniel Wallace does a thorough job explaining reasons for ANA being positive. One problem with ANA is that it's positive in MULTIPLE conditions---or even due to a passing virus, family tendency, or aging (that last would not apply to you!) Another possible problem: your ANA level may not be high enough to be considered significant---you could ask about that.

Next, look for the autoantibodies seen in lupus. But note that ONLY TWO are considered "specific" to lupus, while the others (at least 14 more) can appear in multiple conditions. Look at your tests to see if you were tested for ALL such autoantibodies.

Review the ACR criteria. To be Dx'ed with SYSTEMIC lupus, you generally have to meet 4 (or more) over time, meaning not necessarily all at once; and there are some variants for which you may meet fewer than 4. Do any of the other criteria ring bells with you? For example, certain skin rashes can be useful to a Dx.

The criteria can take quite awhile to evolve, and/or to "trap", meaning timing of bloodwork can make a difference. (It took me years to get answers. It gradually [duh!] dawned on me that I needed a better rheumie, so I lined up some names of big-city teaching hospital rheumies, as my "Plan B".) Plus, what can look lupus-like early on can develop characteristics that point to another condition, or even to one of the "fuzzier" Dx'es, like UCTD.

On your "standard" bloodwork, check to see if any of those values are off.

You could ask your dr. in what conditions low complement levels are seen.

Doctors won't (and really shouldn't) make a call too early, without sufficient supporting evidence. If your symptoms persist, or new problems emerge, you'll have to try again, either with this rheumie or with a new one, which isn't what you want to hear. Obviously I'm only a (dumb) patient, but I truly believe reading can make you a better patient, and can help you sense whether your doctor(s) are "getting you". Post more when you can, OK? Meanwhile, sending you my best wishes, Vee

 
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Old 11-20-2008, 01:27 PM   #3
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teresacar HB User
Re: Now What????!!

Hi murphmom, your symptoms are exactly like mine. I myself too have a positive ANA 1:32(homogenous pattern) i think thats how you spell it. My symptoms started around April of this year, my MD referred me to a rheumy, he ran all this tests on me, all normal except the ANTI-DN-DNA was inconclusive. Went to see him for a second appt. and basically told me not much just to call his office in case I ever developed a face rash, or had new symptoms. I have had many face rashes through out my life, when i was 23 yrs old I started seeing a Dermatologist for my face rashes and he DX me with having Skin Lupus, to not worry because that was not the "bad lupus". I really never had any body or joint aches until this year, i feel like i have the flu, just a feeling of not feeling right, i know something is not right, I think i know my body pretty well. My arms, hands, knees ache most of the time, and not to mention very exhausted. But the day I left the rheumys office I told myself i would not go back unless i was literally dying, i felt like he thought nothing was wrong with me. This week has been a little hard for me, i've had two mouth sores within the last two weeks, and I read that is one the symptoms of lupus, and extremely achy and tired. So when I read your post I felt like that was me, oh by the way my rheumy thinks all i have is a virus that can last up to a year, and he also told me that 20 % of the population are ANA positive, that doesnt mean that they have any disease. At this point I'm really considering going back to my MD and letting him know how i feel and see what he recommends. But i will tell you one thing feeling they way you feel is not normal.

take care,
Blessings
Teresa

 
Old 11-20-2008, 05:00 PM   #4
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Re: Now What????!!

Teresa, I can identify with how you felt about that rheumie. Is there any other rheumie you can see? My first rheumie was downright appalling. He spent the time chatting up my husband and fluffing his toupee (HIS, not my husband's! ), and we left discouraged and disgusted. The NEXT rheumie I saw (affiliated with a teaching hospital) was totally different, exactly what you expect and hope a doctor to be. Doctors are NOT created equal, is what I'm saying. I truly hope you continue to seek the help you need. Hang in there! Vee

 
Old 11-20-2008, 09:18 PM   #5
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Join Date: Jan 2008
Location: orange co., CA
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murphmom HB User
Re: Now What????!!

Thanks Guys, I am not sure what I am going to do. I am still recovering from a neck surgery and am really tired of Drs. I feel kinda like you do Theresa. If I feel like I am dying maybe I'll go back in.

Anyway. Thanks for the support and I will keep checking back.

Blessings,
Nanci

 
Old 11-22-2008, 08:34 AM   #6
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Join Date: Nov 2008
Location: miami fla USA
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mary 47 HB User
Re: Now What????!!

Quote:
Originally Posted by murphmom View Post
Hi Guys, I am new here and not sure who to turn to. I have been experiencing fatigue, really aching joints (especially in hands) all over. Sometimes I feel like I am comming down with something but it goes on for a couple of days.

I went to my regular dr and he tested for RA and Lupus. My ana test came back positive so I pursued it with a rhuematologist. He ran a whole bunch of test. My ana came out positive again ( 1:35 with a speckled pattern)and I had a low c4 complement test.

He gave me a pain killer and said goodbye!! Didn't say I need to do anything else, he didn't think it was Lupus. Why do I feel so crummy and why if I have all these symptoms and test results do I not have a diagnosis of Lupus?

Should I do anything else or just live like this popping pain pills when I feel Bad?? Any help or input would be appreciated.

 
Old 11-22-2008, 08:37 AM   #7
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Join Date: Nov 2008
Location: miami fla USA
Posts: 3
mary 47 HB User
Re: Now What????!!

I feel the same way been to 3 doctors and all ignore my symtons. i have a positive ANA and liver problems. can you tell me what finally happened, with you? did you see another DR.

 
Old 11-25-2008, 02:44 PM   #8
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Join Date: Jan 2008
Location: orange co., CA
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murphmom HB User
Re: Now What????!!

not yet. I am kinda tired of doctors at this point. I think I will wait until after the Holidays and see If I am ready to get back into the fight of finding out answers

 
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