Could I be in the early stages?

[rosam031]

Hello To All,


I previoulsy posted that I tested +ANA but I didn't specify what first make the doctor test me. I had an accident at work and was not healing quickly enough plus I had major swelling and pain. The WC doctor had me tested and found that I was ANA + and that I could possibly have Lupus. He recommended I go to Rheumatologist but I first had to go to my primary to be able to get the referral. Well, I did made the appointment and got tested, this time I also tested + ss DNA so she did gave me a referral to the Rheumatologist. I don't have the malar rash, or some of the other symptoms that other people have but I do have an ulcer in my mouth, fatigue, extremely tired even if I sleep, loss of hair, aching joint pain, I also see flashing lights in my eyes, I was also diagnosed with depression, and high blood pressure. I also noticed that I get red on my cheeks specially in the sun but it does not go across the nose or gets flaky just red like if I had blush. I tought

My other blood work said that my organs are doing ok so, does that mean that I could have it and be in the ealry stages or not have it at all?

I just received my referral in the mail so I will be making the appointment ASAP! so I can have some answers to this.

Can anyone relate?

M

[wifajax]

Hi M! style_emoticons/<#EMO_DIR#>/foryou.gif

I can indeed relate to your story. I haven't been officially diagnosed yet, either, but my GP believes I have lupus. I am also ANA positive (1:1280, homogeneous pattern). I'm waiting on the rheumy appointment scheduled for Aug. 16th. I doubt I'll have a diagnosis then, since my doctor left out a lot of tests that the rheumy will want done.

Have you looked at the 11 criteria that doctors use the determine if you have lupus? They are pinned on this web site, and you can search for it. Your doctor will want to see at least 4 of the 11 in your case to feel comfortable giving you the diagnosis. You do have symptoms that are consistent with some of the criteria.

Lupus is different in every person who has it, so don't be worried about the symptoms you don't have. Only about a third of lupus patients get the "typical" malar rash. I have never had a mouth ulcer, to the best of my knowledge. I don't get fevers, either. But I do have nausea, extreme fatigue, joint pain, tingling in my legs, migraines, vertigo, nodules, and the malar rash. My symptoms get worse if I spend time in the sun.

I have visual problems, too. I see flashing lights and what looks like heat waves. I'm having a real problem with dizziness, and it seems to hit me most when I drive. Very scary!!!

Good luck with your rheumy referral. style_emoticons/<#EMO_DIR#>/clover.gif I hope you can get in soon...My rheumy had a three-month wait.

Terri

[Clare.T]

Clearly your health isn't good so it's just as well to get it investigated. Make a list of all your current health problems and of life health history leaving nothing out because even ob/gyny problems could be lupus related. Include symptoms that come and go regularly. List any chronic or recurring health problems of close family members and of any medicines you are currently on or have been taking recently.


Lupus is not necessarily a progressive disease. I'd like to say not usually because a number of studies relating to disease progression do seem to indicate that many cases do not evolve more serious symptoms after diagnosis and even go into lengthy remission.

The focus is usually on those cases where it does progress, the more severe and difficult cases, as on this forum. The people who are living perfectly well with their lupus under control don't post on forums and don't get studied by the doctors.

So there's no reason to assume that you will get worse. You are doing your best now to to get diagnosed, get effective treatment and be closely followed, thus lessening the chances.

I have never been able to find out what diagnostic significance the anti -ss DNA antibodies have. It's usually the anti- ds DNA that are significant because they are regarded as highly specific to lupus.

Try to fnd some interesting activity, maybe start a long put off project, to take your mind off the health worries. You have access to excellent information here that will help you get the best outcome. Worry isn't worth it until you know exactly what you have to worry about, have some facts to go on.

Keep in touch and good luck

Clare

[rosam031]

Hi,

I just made my appointment but is for August 3rd, they said that is the earliest appointment that they have. I called other Rheum. in the area and they all have the same wait 1 to 2 months, is just very frustating. The receptionist also told me that in my area there are only 5 Rheum. and they all have large practices with long waits. I have been in this dilema now since March and I just want answers. I will take all of the Xrays, MRI, Scans, blood work and all the history and be prepared that way I can get a quicker answer.

Is just hard to get my mind off it ever since the doctor mentioned it to me. I also, have headaches that don't go away with tylenol anymore, dizzy, and I have also had the tingling in my legs, very tired. My primary prescribed the Cymbalta for the depression and it has help me with the pain, now I am able to walk better, have very mild pain, and I am able to sleep. The only thing is that my insurance does not cover it and is very expensive $132 a 30 day supply.

My hubby says just keep on our goals and keep moving forward but I can't until I have answers to my problems. I am constantly looking in the internet for info. and wonder if I have had this for a while and my previous doctors didn't catch it.

Well, I will post again when I get a diagnosis from my Rheum.
Thanks for the replies.

M

[helloos]

Hi there.

I just wanted to say that you have done the right thing by setting the appointment. Maybe you can be on the cancellation list too. I know how frustrating it is to want to find out answers and the cause to all this discomfort. Try not to be searching all kinds of sites about this disease. There are a lot of sites that are not correct and misleading. Also it will just make you worry more about it. Try to search fun things or ways to relieve your stress. Keeping the thought of Lupus always on your mind, will destroy you. It will run your life. It will constantly be on your brain. Try not to get swept into that nasty world. I did. It is not pleasant. You stop living. Try to be nice to yourself during the wait and find some things to take your mind off of it. Try to relax and stay stress free. Take comfort in knowing that you are doing everything right by getting into that doc. If not Lupus, maybe he can help you with the direction of what it is. Until then, do some things for yourself. Try to keep your pain under control. Stay out of the sun. Get rest. Eat right. These are things they would be telling you do if you did have Lupus. If you are in a lot of pain, maybe the doc or a pain clinic can help you out until that time.

Good luck and keep the faith !!
http://i58.photobucket.com/albums/g275/todayimfelicia/83ba1bc8.gif

[wifajax]

Hi again M!

Call the rheumy's office again and find out if they keep a list of people who are willing to come in if there's a cancellation. I've done that with mine in the hope that I can get in sooner than August 16. There are 5 rheumies here that are in my network, but only two are board certified. The other one has a 15-month wait. Incredible! style_emoticons/<#EMO_DIR#>/hissy1.gif

Terri