Skip to content
Do you think I will be diagnosed?
avatar
Jazzydiamond7 posted:
Let me start by saying I am horrible about going to the doctors. I put it off until I can't function. I got very ill about a year ago, it started with a headache that completely knocked me off my feet. I had just returned from vacation, in which I was taking my kids to the beach everyday. I broke out in rashes and couldn't balance, my joints could barely bare weight. I went to the E.R. And they could not determine what was happening, they tried three different pain medications to relieve the headache I was having and nothing helped. I stayed in bed for a week. I was told by the E.R. To see a neurologist and did so. He had all types of MRI's and blood test done including a test for lupus. My ANA came back positive with titer of .160. I was sent to a rheumatologist that told me I tested positive for SLE and that he could do other test but didn't want to kill me with more blood work at the time. He then wanted to have me to return to the neurologist. I felt like a ping pong ball and just stopped going to the doctors. For the past year now I have started seeing more symptoms but didn't want to go back to the doctor so I just dealt with them. I continued to get rashes on my hands, fingers, face. Under my eyes swelled up so bad that I looked like I had been beaten up (this was happening for months along with an itchy rash) I broke out in a pronounced butterfly rash for about a week. I have horrible joint pain in my fingers, ankles wrist, knees, and the fatigue is the worst. I work so hard and by the weekends I am in bed. I have no energy left and can't live like this so I returned to a new rheumatologist. I had been taking photos and keeping a video diary of all of the symptoms I had, and was able to show my Dr. How bad they were. She ordered a full panel and contacted me the other day to let me know that all the specific test came back negative, but I have a positive ANA again and severe anemia. She was contacting me about the anemia because she was really concerned and wanted me to get on iron supplements right away. I asked her about what she thought about the + ANA and she said she will talk to me when I come to the next appointment but that with the photos I showed her and the symptoms that I have she wants to start treating me for lupus. Does this mean I will most likely be diagnosed? I am so tired of living like this, I feel sick all the time and feel like no one understands. I feel guilty that I am too tired to do anything but work. I'm only 36 and I don't want my kids to always see me like this, I'm embarrassed that I can't just deal with it and be stronger. I feel alone, and like no one can see how bad I feel and how hard it is for me to put a smile on and act like I'm fine because I don't want them to think all I do is say "I'm tired or I feel horrible". Sometimes just getting basic things done takes everything I have in me. I hope I can start living again sometime soon. If I can't have answers I feel like just giving up. Please help.
Reply
 
avatar
lisatru62 responded:
First, you need to keep your appointments with your doctors. If you have lupus you will have many doctors and yes you will feel like a ping pong ball. Treating lupus can take time to see results so the sooner you start the sooner you will start feeling better.

You shouldn't feel guilty for feeling bad, it's not your fault, it is a disease. People who have cancer don't feel bad, we usually feel sorry for them. Just because there aren't huge outward signs of a disease doesn't mean you can't hurt or feel tired. That is what lupus does to us.

It is a long row to hoe when it comes to getting a diagnosis and you must see your doctors on a regular basis. Once they figure out a treatment that works you will only see them occassionally.

Stiff upper lip and don't let any doctors or people give up on you, least of all yourself.

Lisatru62


Featuring Experts

Dr. R. Swamy Venuturupalli is a board-certified rheumatologist practicing in Los Angeles. He is Clinical Chief of the Division of Rheumatology at Ce...More

Coping
With Lupus

WebMD's Day2Night will help you develop personal coping strategies for living with lupus – at home,
at work, or with family
and friends.
Visit Lupus Day2Night

Helpful Tips

Blood Test Results
I found a useful website that lists various blood tests and gives the definitions and normal ranges for them! This website also has a wide ... More
Was this Helpful?
5 of 8 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.