I am new and scared!

Welcomw sheyna, I glad that you have found us. For me I had been having trouble for years. The thing that got me tested was that I had and accident with my work van. That sent my blood pressure up and me out of work. When my pcp did blood work, the test came back with a posative ANA. So, he sent me to be tested by all kinds of doctors.

I hope you are doing well.

Hi Sheyna and welcome. I'm so sorry you are dealing with all of this and that you still don't have any answers. Being sick and not having a name for it can be so hard. I really hope that after all of the tests are done hte docs will be able to tell you what is wrong and that they can start treating your symptoms. Please ask any other questions you have - all of this can be overwhemling. Take care and please keep us updated on what you find out about your test results.

Sheyna, I am so sorry you are in the dx hunt. MS is very different than lupus though both can respond well to steroids like prednisone.

I am unsure what exactly my first symptoms were as I have been ill for so long and it took so darned long to get a dx. I suggest consulting a rheumetologist. They will know how to proceed in testing you, but please make sure that the rheumy you choose specializes in lupus because not all rheumys are well versed in lupus. I know everyone assumes all rheumys can dx and tx lupus but the truth is that only a handful of rheumys know lupus well. The one good thing is if you find a dr who knows lupus well then you have found a doctor who knows medicine and the human body well- at least according to the doctors I have seen who have commented- and the reason is lupus can affect every single body system. Lupus is different is every single person.

I suggest going to lupus.org for good info if you want to understand the disease better.

Hello Sheyna! Welcome to HW! I had many of the symptoms that Rosie describes such as:

Fatigue, joint pain, rash, hair loss, red rash on face and bridge of nose, unexplained fever, protien in my urine, and, then, more and more FATIGUE! At the very beginning, my arms and fingers would go numb at night and wake me up. All of the other symptoms came along very soon afterwards.

My prayers are with you!

Hey Sheyna...
Glad you are here... it can be very comforting having what you feel and think validated...at least that's how I feel. Helps you know you aren't crazy, you can talk to people who understand you, and vent when you need to!

I hope you get a dx soon. That is the worst part, I think. When you know what you are dealing with, you can become informed and tackle it head on.

Mine started out as joint pain. I guess I was probably feeling the fatigue too, but just thought I was doing too much and being a slug. I had the brain fog (still do)...but I never reported that to any doctor as a symptom. I just attributed it to stress and being too busy. I also had the ridiculous sensitivity to the sun...which I just sort of blew off. I didn't have the fever like many have. In fact, I tend to run a low body temp. But - you know how sometimes you feel like you have a fever (not to the touch, but sort of in your head... does that make sense?) I had that. So - not sure if it was lupus related or not.

That's the thing with lupus...it's all of these obscure symptoms that often don't really seem like "symptoms" at all.

Compared to most...I'm finding that I was diagnosed fairly quickly. But, I attribute that to two things: My sister has RA and I made my PCP aware of it. After a bunch of cortisone shots in my elbow and it not helping, then physical therapy that didn't work, he honed in pretty quickly...thought I had either fibro or RA. Turns out it was lupus. He sent me for blood work that showed high ANA. From there, the PCP sent me to the rheumetologist who did a bunch more blood work, urine test, and x-rays. I had all the classic signs of lupus through my bloodwork (sed rate, etc.), but the clincher was the results of the anti-dsDNA.

I know it is easy to say, but don't borrow tomorrow's trouble. Meaning don't assume the worst. Deal with facts, not speculation.

I guess one thing lupus has taught me is to be patient (definitely NOT a strong point of mine...I'm the instant gratification, make a decision and get on with it - type). I have learned to be patient waiting for test results, patient waiting for doctor appointments, patient waiting to get off prednisone, patient waiting to feel good, patient waiting to remember the word I'm trying to say. You get the picture.

Make sure you let us know what you find out. And, keep coming here to ask questions...

Blessings...
~Kim