Could it be Lupus?

Neurogirl, I don't know if I can give you a definite answer to your questions. One thing I have read is that some healthy people can have a low positive ANA, but if you have a positive ANA and have symptoms then a doc should be looking into things for you. Also a positive ANA can indicate other illnesses aside from lupus like Rheumatoid Arthritis, scleroderma, myositis, polymyositis, autoimmune thyroid disease, and I know there are some others that I haven't listed. I'm not sure about the low level of Antiphospholipids. I do know that lupus can be a very slow progressing disease for some people and it can take years to develop. It is possible you could be in the early stages of it with some vague symptoms. You can click on the resources in my signature and it will take you to a page where you can look at the diagnostic criteria for lupus (you have to have 4 of the 11 symptoms to get a diagnosis). If you are thinking you might have lupus, you can ask for a referal for a rheumatologist since they are the ones who diagnose and treat lupus. I also think it's a good idea to keep a list of your symptoms and make sure you get checked if any new symptoms occur. I wish I could be more specific in my answers, but lupus is a very tricky disease and can sometimes take many frustrating years to get diagnosed since there is no specific blood test for it. We call it the great imitator and the disease of a thousand faces. I'm hoping that you will get some help with your symptoms soon and that a doctor can help you figure out what is causing them. Please let us know if you have any other questions. Take care

Hi Neurogirl:

First off I like to say I'm sry to hear that you're having these symptoms and feeling bad. The researchers that study lupus, can not say 100% what causes it. Sometimes an illness can trigger it, medications can cause drug induced lupus, there's the possiblity it's inherited in families. They really just don't know. Hippi gave you very good advice and information. I've had lupus since I was 23 but I didn't get an official DX until I was 36 yrs old. Your ANA is the same as mine. Whereas, my daughter's ANA is 1:640 and she has no signs of lupus. People can have a positive ANA and not have a single thing wrong with them. We've been following my daughter since she was 5 yrs old, her ANA stays positive it never changes. The Peds Rheumy said that each year she goes w/o symptoms of lupus the better.

Lupus is a tough and tricky disease to dx, you may have to wait for symptoms to appear before you can meet the requirement for 4 out of 11 symptoms needed for a dx. That's what happened with me, my symptoms started out slow and like I said it took them forever to officially say, "yes you have lupus". You didn't do anything to cause it if you have lupus. It just happens, I hope that you can see a rheumy soon and get some answers. Hang in there and don't give up.

Take Care,

Barbara

Hi Nuro:

When I first started having issues when I was 23, I had rashes on my face, joints, legs and arms. I broke out in a rash as soon as I came in from the sun. I ran low grade fevers and suffered from fatigue and joint pain. As the years passed I suffered with pericarditis (fluid around the heart), pleurisy (inflammation of the lining of the lung), I had troubles with low platelets, anemia, I had low C3 and C4 panels. I had a double stranded DNA come back positive, a positive ANA on and off over time. My CH50 was very very low, and only lupus patients test positive for this. I spilled protein in my urine, I had bowel issues all the time, headaches, and forgetfullness.

When I was dx'd in 2001, I was started on prednisone to help with my joint pain. I'm still on prednisone, and my disease is worsening everyday. I've long forgotten what remission is like. Of course I've got an additional problem and disease. I truly believe that my MDS and lupus are feedingl off of each other. I know I need to stay positive and have hope, but I don't. My MDS is going to get worse and I'll get sicker, this is a known fact. My doctors are uncertain what my lupus is going to do.

Hope that helps some.

Take care,
Barbara

Hi, Neurogirl, and welcome to the forum. Hippi and Barbara gave you some very good information. For more specific information on lupus and anemia, lupus and antiphospholipis, and much more, go to the websites hippi has in her post. The first one is the one I'm most familiar with - by the Lupus Foundation of America.

Lupus, as you have already figured out, is usually a hard disease to diagnose and most of us have gone for many years with symptoms prior to getting a diagnosis. And many of us were treated as though it was "all in our heads." We just listened to our bodies and didn't give up. You'll find a list of symptoms in both sites. My worst symptoms are joint pain and extreme fatigue. If I spend any time in the sun, I'll go into a flare, and I'll bet nearly all lupus patients finally learn to stay out of the sun.

I agree with Barbara that making an appointment with a good rheumatologist is the first place to start.

From your name and number of posts, am I correcty in assuming that you're in the Neurology forum? Tell us more about you. You'll find lots of helpful and knowledgeable people here who are very willing to listen and help. Good luck, and hope to see you again soon.

Pat

Thanks girls!! CAn I ask if any of you have visual disturbances with Lupus. That is my very first symptom, along with headaches, lightheaded, dizziness and zap feeling once in a while in my body. The vision is so wierd though. I get sparkles, zig zags, trails, afterimages, purple swirlies, light flashes and more :(

I am usually in the neurology forum and heart one too.

Hi Neurogirl,

I haven't had any of the symptoms you describe. Well, except for the rare times that I have a migrane headache, and isn't that a neurological problem? I haven't seen anyone else on this forum talk about the symptoms you describe, and I'll be curious to see what others have to say.

I do know how frustrating it is to have symptoms without a diagnosis. Hope you get some answers soon.

Pat

I get the headaches, dizziness, and neck pains also!! Sometimes I do get those floaters but not necessarily all the time. My doc chalked it up to AP disorder but it happens with OR without panic for me (I do have AP disorder but think these are not necessarily related). I can't find any doctor to take it seriously and it can be debilitating especially with the dizziness is full force. I hope you get some answers... I also may just have to keep bugging my docs about this.

Take Care

Yes, I apologize... AP stands for Anxiety Panic. When I get anxiety or panic episodes than I usually will get a jolt of adrenaline but I don't always get it with these symptoms so I'm not sure.

Take Care

Every one is different but for me... I get this rush of adrenaline and I get very lightheaded. My heart rate goes up although I don't get chest pain with them (some people do). I get dizzy and my focus is off and concentration is hard. I kind of go into a derealization state, I am aware of whats going on around me however everything is really fuzzy. This is what happens and my docs say its a panic attack although meds (was Xanax, now Klonopin) doesn't completely help. Hope this helps some.

I have no balance from time to time

I explained this to some people somewhere else because my next guess is that it could be something else because like you, I get them with no panic or anxiousness and there doesn't seem to be any trigger (except I get them more in bright or flourescent light) and I was told that I may want to check with a neurologist so I may just do that. I always pause though because I always hate to go somewhere and feel like an idiot, I know I need to get over that though.