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Discussion Starter · #1 · (Edited)
Hi, I'm new and am here looking for help and answers. I am a 19 y/o female, and I've been experiencing several, if not all, dibilitating symptoms of lupus for several months now, and they are only getting worse and my anxiety and worry continues to get worse. I have a long page of all the symptoms I experience:

•Constant fatigue
•Was badly sick constantly over summer
•Periodic weakness
•Loss of appetite
•Shortness of breath
•Sharp pain in ribs/sternum (maybe residual costochondritis from spring?) that worsens w/ stress
•Muscle soreness
•Consistent abdominal pain w/ certain foods for 4+ years
•Heat flashes
•Bowel inconsistencies (constipation/diarrhea)
•Easily cold
•Had ulcers/sores in mouth several times
•Weight gain (17 lbs)
•Hair loss
•Memory loss
•Dry patches on arms
•Fevers w/ headaches
•Coughing fits
•Stiff/sometimes swollen hands & fingers for first few hours of day

Most symptoms a worsen with exercise/exertion, stress, and lack of sleep.

So far as I've been able to research, lupus or another AI disorder is really the only fit. My mom does have rheumatoid arthritis and psoriasis, so my doctors so far see it likely that I could have an AI.

A blood lab came back postive for the ANA panel (1.1 on the antiscleroderma antibodies test with a normal being 0-0.9) and my doctor referred me to a rheumatologist, but after ordering a Echocardiogram and pulmonary function test which were both negative, and after not seeing any real symptoms for scleroderma itself (my skin is overall fine besides the few dry, scaly patches on my upper arms), he doesn't see the need for me to come back in for another 6 months.

My symptoms are prohibiting me from daily activity from exercise to work to my daily life. I keep coming back to research about lupus and it all just makes a lot of sense with what I feel is happening with my body right now. I'm not sure what I can do to combat my symptoms without a doctor's diagnosis, and have been unable to obtain any diagnosis for so long that it's becoming exhausting.
Unfortunately, there are not too many rheumatologists in my area and the one my PC doctor referred me to took about 2 1/2 months to get an appointment with. It's really at this point getting very exhausting, mentally and emotionally, having to deal with all this pain and weakness, and it concerns my loved ones. Is there anything else I can do?

Thanks in advanced for the long read and any help <3

4,445 Posts
Hiya and welcome to site...... what other blood tests did you dr run ? Did he do a dry eye test for schleroderma ? Did he have any other explanation for your symptoms ? Autoimmune or not things are not settled and normal so it needs to be further interested to see if they checked your Thyroid and other autoimmune bloods........sorry for a barrage of questions !! ..............Claire

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Discussion Starter · #3 ·
Thanks for responding :) The only things my rheumatologist was really looking for was scleroderma and Raynaud's symptoms. My primary doc has run a few blood tests, my thyroid came back normal and so did all the other AI blood labs besides the scleroderma and the initial overall blood test, in which only the ANA came back positive. My rheum also had me do some other blood work when I had the echo and PF test, but it looked like everything I had previously tested for.

10,208 Posts
Hello and welcome aplatanos 97.

Part of the problem here is many of our symptoms are vague and shared by other diseases. Sometimes it takes time for something definitive to show. The rheumatologist does not want to label you with an incorrect diagnosis as it could affect both treatment and your chances of getting insurance in the future. Having you return in 6 months to monitor your symptoms means the rheumy is not dismissing your symptoms there just isn't enough to go on to give you a diagnosis. You are always free to get a second opinion.

Take care,
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