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View Full Version : hello new here..not diagnosed yet ??



Lotus
08-30-2011, 09:19 AM
Hi everyone,

I have been having tests since Jan '11 and since being in hospital have not felt the same as I use to be, Im not sure what happened to me,all as i re-call, was that I went into ED, after they though i ahd a mild stroke, im 39 years old. I spent 6 days with tests being done all my left side went paralyzed, but appreantly no mild stroke, then tested for MS, but no again...each three month period i have blood tests and its a wait n see, my ANA levels up still flagged, but they will not diagnosed me, but obviously something is going on...since this time has passed, my memory isnt as sharp, fatgiued, joint pain and bad headaches..which ive never had really in my life,...I really dont understand nay of this and if someone knows that if our ANA's are up then it means you've got something that is at risk of attacking your cells...and the only way doctors can diagnose is when its to late, and only when you have 4 out of the 11 symptoms...Can I fix this beofre it does get to Lupus or will I eventually just get it and could I be early stages??
Anyone out there with any experience similar or help, would be so much appreciated..Thank you

Suzanne

Gizmo
08-30-2011, 01:35 PM
Whew, those are some big questions you have Lotus! It would be nice if lupus were a nice, neat little diagnosis, - like diabetes - that you either have it or you don't. Unfortunately, that rarely is that case and it takes some people many years to develop enough symptoms/abnormal labs to be diagnosed. It took me about 10 years to be diagnosed, but my daughter (who has similar symptoms, but her ANA is normal) has not been diagnosed with a specific autoimmune disorder. However, she was started on Plaquinil, then prednisone and now is also on methotrexate, all of which have helped her symptoms.

Have you seen a rheumatologist yet? Some rheumatologists are less concerned with labeling an autoimmune disorder than in treating your symptoms. Maybe you could make an appointment to talk with your current PCP or rheumy about the concerns that you have raised here. They might be open to trying you on Plaquinil (for most people there aren't really any side effects - you just need to get your eyes checked every 6 months) to see if you improve. Unfortunately, it takes 3 or 4 months for most people to start seeing a difference. Many lupies are able to control their disease with that one drug.

I am not implying that it sounds like you have lupus - your symptoms could be autoimmune, or complex migraines or something else altogether. My point is that if things are heading in the direction of lupus, a open minded rheumy might work with you on meds. Let us know how things go, and welcome!

tgal
08-30-2011, 01:58 PM
Hi Lotus. First let me welcome you to WHL. As Gizmo said lupus (and other AI diseases) js very hard to diagnose. There is no test for Lupus. Lupus is basically a diagnose that is given when everything else is ruled out.

As for the positive ANA, that does not necessarily mean Lupus nor does it mean that your organs are being attacked. Positive ANA can happen for many diseases or illnesses and hence, is not a test for Lupus. I will post a link to the 11 Criteria at the bottom of this post.

Hope this helps a bit. Please keep us posted!

lovedbyHim
08-30-2011, 05:07 PM
Hello Lotus, welcome to our family. I know several people with elevated ANA and they don't have Lupus. I agree that ruling out is how it goes and that takes time. It took years to get me figured out. I thought I would beat up about 5 doctors until I was diagnosed correctly. Hang in there dear. Read all you can and keep good documentation of your daily symptoms.

steve.b
08-30-2011, 07:53 PM
hi suzanne,
welcome to our cyber family.

as others have said, auto immune disorders are often not easy to diagnose.
there is 63 of them, and there symptoms often overlap.
you can get moree than one at the same time, just to complicate things further.

also a raised ana means some thing is happenning with your immune system.
it does not neccessarely mean lupus, it could be a simple viral infection, or one of a multitude of normal ailments.

please do not fear the worst until you have a few more tests.
most people will have lots of tests,before a diagnosis.
this is because doctors need to rule out illnesses.

with a broken leg, the symptom leads to a diagnosis.
with auto immune issues, you need to rule out deseases first, then sort out what is left.

Lotus
03-18-2012, 09:44 PM
hi gizmo,

thank you for your post, Its been a while since I posted here. I have now got an update and Feb 2012 I was diagnosed with Lupus. I now am waiting for Rheumatologist and go from there.
Regards
Lotus.

Lotus
03-18-2012, 09:47 PM
Thank you to all of you for the welcome and Im sorry I havent been on here, Ive just logged back in today and looking at way now to research for further info and relate to others. thanks Steve.Bryce for your comments, Gizmo,Lovedbyhim and Tgal....much love thank you for the help...