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Posted 1/24/2008 1:54 AM (GMT 0)
I had a positive ANA 4 months ago I think either in the 1:6ish or 1:8ish area and it was speckled. My doctor did other test that came up neg. so now he wants to check me every 3 months and hold off on the rheum doc. When I ask about the symptoms he doest really answer me. I am always tired, not as much sleepy as just my body is just worn out!! I have had problems with back pain,feet pain(mostly in the a.m.)and now hand pain. My hands get really red in the heat and white in the cold. I was also dx'd with severe IBS after having a colonoscopy 1 year ago, my mouth is always dry and last but not least very bad headaches that I wake up with and last for a few hours to all day. Do these sound like Lupus symptoms? Please help.
Posted 1/24/2008 2:06 AM (GMT 0)
Hey Loni...

Glad you found us.

Your ANA result was probably 1:640.  That's what mine came back at and they sent me right to the rheumatologist.  After the rest of the testing, was diagnosed with SLE.  What was the other test you had?

A lot of what you are talking about sounds like lupus.

I would suggest that, if you aren't comfortable with the answers you are getting - get a second opinion or seek out a rheumatologist yourself.

~Kim

Posted 1/24/2008 2:17 AM (GMT 0)
I had I think 2 different RNA test done and something that starts with an S I had them written down but cant find it. My sister who I do not talk with often just told me the day after my ANA results that she was dx'd with RA. We do not know our family history(mom left when I was 9 and dad is passed away). Thank you very much for responding to my post! I am sorry that you were dx'd but if you feel like I do it can also be a relief to know that your symptoms are not in your head as soooo many doctors like to make you think!
Posted 1/24/2008 2:44 AM (GMT 0)
Loni...

I have a favorite saying on this site:  you are the expert on you...

If you aren't satisfied with the answers (or non-answers) you are getting, you need to push the issue - and if the doc doesn't respond, he/she isn't worth your time, money or energy.

I am very lucky - I have a PCP that I dearly love...and once I started having additional symptoms, he moved very quickly to figure out what was going on.  He is also not one that makes you feel stupid when you talk to him.  I have panic disorder also - so he has had his hands full with me!

As far as family history...  This is what I can share from my experience:

I have a half sister - we share our mom.  My sister has RA really, really bad...I have lupus.  Our mother died 12 years ago.  She had problems with her shoulder...they called it a frozen shoulder.  We wonder if she had RA or another auto-immune problem that went undiagnosed.  So family history does play into it.  I had told my PCP the family history about my sister - so when my symptoms escalated, he honed in on them and my sister's RA and started the testing process.

It was a relief to be diagnosed.  It's a very frustrating disease tho.

I would suggest getting copies of your lab results so you can see what tests you had and the accompanying results.  I get copies of all my tests so I can track what is going on.

~Kim

Posted 1/24/2008 2:48 AM (GMT 0)
Okay, thank you! Oh but the way, are you getting frequent eye exams with a retina doctor because of the plaquenil? I work with eyes and though I havent seen anyone get macular degen. from it they say it can happen.
Posted 1/24/2008 2:52 AM (GMT 0)
Hi loni,

 

Welcome to the forum.

 

Yes, your symptoms could be lupus, or another autoimmune disease.  They all mimick each other so well.  Your doctor is wise to keep checking your ANA.  If it is 1:640, that should raise a red flag with him. That's the ANA I was diagnosed with.  It's considered high.  If your doctor is humming and hawing about your ANA titre, I wonder if it read 1:60 or 1:80?  That is considered a low positive.  A huge number of the general population have that, and will never develop any symptoms.  It's weird how it works.

 

I hope we can help you with your questions!

 

Ginny

Posted 1/24/2008 2:54 AM (GMT 0)

Thanks for checking!

I go every six months to an opthalmologist.  She is keeping a close eye on me (no pun intended).  My first visit, they took pictures of my optic nerve, etc.

I just went back for my second visit last week and passed my field vision test with flying colors.  They checked the macula and it still looks fine.

kz

Posted 1/24/2008 3:03 AM (GMT 0)
Thanks Ginny for responding, I am going in 2/08 for my 3 month blood work so I will get a copy of what I have already have in the chart. I do not really not much about Lupus so I didnt pay alot of attention when he showed me the #'s.
Posted 1/28/2008 4:46 AM (GMT 0)
My daughter is 12 and has a positive ANA of 1:640 in October and again in January. All the other tests on the Lupus panel are negative. She does have oral ulcers in her mouth, raynauds, dry eyes and is extremely tired. She goes back to the Doctor in April for more testing. He did not start any medication yet and says this is the beginning stages of lupus. She has been out of school for 3 months and started back on Friday and it wore her out. She is so exhausted with any little thing that she does. Does anyone have any suggestions?
Posted 1/28/2008 5:52 AM (GMT 0)

Dear vetteme22,

I am so sorry to hear your daughter is going through this. Has her doctor started her on any medications? Unfortunately fatigue is a common symptom of lupus and not much can be done about it other than rest. Plaquenil helps some with this but it takes about 3 months to start to work. In the meantime, could your daughter go to school for 1/2 a day? Can she be homeschooled? I know how awful the fatigue is and her body really does need the rest. Welcome to our group and please feel free to ask any questions you would like. Why don't you start a new thread with this post? (Just click on "new topic" and give it a title) I'm afraid the other members will not see it here and I'm sure they would like to offer advise too. Again, welcome. This is a great place for advise and comfort.

Sandy

Posted 1/28/2008 5:58 PM (GMT 0)
If your daughter is this tired and the Dr doesn't want to see her until April -- that's a long way off and I'd look for a second opinion in the meantime. I don't think she should remain untreated for that long.
Posted 1/28/2008 8:46 PM (GMT 0)
Please find a new doctor for your daughter. I got sick in my early teens and I did not get treatment until I was 28. The damage done is irreversable and I nearly died. Find someone who specializes in lupus and hopefully kids too. If she is that tired then this is not the beginning stages.
Posted 1/29/2008 2:53 AM (GMT 0)
Took my daughter back to the pediatrician today and he is keeping her out of school until the end of April. She has been homeschooled by the school district since October so it will continue. She kept her 4.0 grade average too. The pediatric rhumetologis said he wanted to see her back in April but I will see if we can get her in sooner. Nothing came back on the full lupus panel that they ran except the positive ANA of 1:640. She does have Hashimotos Throiditis and her TPO AB is 1000 she is on 88.8 mcg of synthroid, Thanks for the advice. I posted a new thread too.
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