Hi Erica, I'm so sorry to hear this is happening to you. I also began my health "journey/nightmare" right after college. To me moist of these symptoms seem like clear, cut lupus. Have you had your ANA? My dr got the positive ANA and worked backwards to diagnose from there. I think you should probably ask him to send you for blood work before you go see him if you wait that long so he will be able to rule somethings out. The not knowing is the scariest part. Lupus is different for everyone but what I love about the internet "lupus community" is the support. You will get through whatever it is. I'm 26 now, 24-25 were kind of taken from me by this illness, but I got back up and am doing better then ever. Hopefully you have a supportive family to help you through the downs and enjoy the ups with you. Best of luck, keep us posted!
Hi Erica, yes autoimmune could be the culprit. Perhaps sjogrens and.... maybe lupus.... there might even be some scleroderma.
Hugs and prayers
Thank you all for your kind responses! Unfortunately, I have to wait until December for my autoimmune testing, but the mystery became more mysterious today! I went in for my annual well woman exam and two large hard lumps were discovered in my left breast (she said they were not fibrocystic changes). I am having an ultrasound done on my breast next week, and she has referred me to a breast surgeon in town. Hoping that it is just a benign tumor or cyst! Did either of you have breast involvement? (aside from fibrocystic breast disease)
There's certainly something systemic and foundational going on here.
With so many conditions and symptoms, I would suggest you get low thyroid function ruled out first.
The reason for this is that for any maintenance, repair and healing at the cellular level for any organ, any bodily system, adequate thyroid function is
Unfortunately MOST hypothyroidism cases are not diagnosed because of flawed testing.
The standard testing TSH and T4 miss the ...mark in more cases than not.
These tests only test for the circulating levels of these 2 hormones and not for the actual function of bioavailable T3, which is the hormone used in the cells.
In such a case the patient has exactly the same clinical presentation as
patients who do not produce enough thyroid hormones, yet their doctors
usually go only by the negative labs, leaving the patient with unregulated low thyroid function!
It is no different for diabetes type 2, where patients have insulin resistance, while they have adequate levels of insulin in the circulation.
Please rule this out by asking and insisting for Free T4, Free T3 and Reverse T3.
You may also do a screening test on your own (which was the (superior)
method of testing in the past, along with clinical symptoms and history,
by doing Dr. Barnes Basal Temperature Test.
Untreated or under-treated hypothyroidism, if prolonged, may result in the onset of many disease processes, including autoimmunne.
Also double check Ehlers Danlos as that can cause a wide range of bizarre systemic issues. Especially along with autonomic dysfunction. Although hair loss and ulcers sounds more vasculitic or autoimmune. Do you have to wait for that dr to get your ANA done?? The UK doesn't have a clue how lucky we are in these respects with access to tests like that never being down to one dr like that.
Just wanted to give a quick update. I saw a spine doctor today because I have been having upper back pain and I also have developed a weird hump on the top of my spine. X-rays showed that I have scoliosis in my thoracic spine that is curved to the right and I also have forward head posture (extreme) that has created a dowagers hump (kyphosis), he said that it was the worst x-ray he has seen for forward head posture in someone my age in a long time. He also informed me that I have arthritis in both my right and my left ac joint, I had not known that prior I just thought it was my left because it was the only part we had imaged. He asked me if I have been tested for rheumatoid arthritis and lupus and said that he wouldn't be surprised if I test positive for one or both systemic diseases. I informed him that I have an appointment this upcoming Thursday with my family doctor to do testing for autoimmune diseases (finally) and to let him know what my blood work comes back as.
I have extreme muscle spasms over my body and red nose all the time now it's started on my cheeks fingers have begin swelling at night and my back is always stiff and in pain. Dr is treating me with stiff person syndrome. Can any one relate.