For starters I am a 24 year old female, and I have made an appointment with my GP back at home but I wont be able to see her until December because I am in a different state for grad school.
I have been plagued with medical problems my entire life, but it seems like once I started graduate school they have really been rampant. I am going to make a list of my current medical problems, past, and undiagnosed symptoms to see if this rings a bell for anyone. I have told my doctor that I think I need to be tested for autoimmune diseases and she agreed based on what is happening, but I don't know if I should specifically ask about Lupus.
Current problems I am being treated for/under the care of a physician
• Plantar Fasciitis
• Interstitial Cystitis
• Irritable Bowel Syndrome- constipation (no cause- very bad as of recently, I can take up to 5 laxatives at once and still cannot go)
• Wandering Atrial Pacemaker (result of cardiac ablation)
• Parotid Gland Obstruction (very recent, waiting to see a surgeon who specializes in salivary gland diseases, current ENT said that there is a buildup of fibrosis tissue in my cheek, didn't know why)
• Fibrocystic breast disease
• Arthritis with degenerative changes and bone spur (Orthopedic had no idea why, the arthritis is in my AC joint and has caused a bone spur to form on top of the joint)
And finally undiagnosed symptoms that no one knows the cause of
• Large accumulation of adipose tissue on back of neck (like a buffalo hump- was tested for cushings)
• Swelling of ankles and feet- cardiologist ran tests and it is not heart related
• I cannot see well at night- new onset when I moved to different state
• Mouth and Nose ulcers
• Mouth Rash
• Fatigue- I can sleep for hours and hours during the day and still be tired when I get up
• Hair is falling out- I am finding clumps of my hair on the carpet
• I get heat flashes out of no where and my face will get really red as if I was recently sunburned and it makes me very irritable
Does anyone have any idea if this could be lupus or a different type of autoimmune disease? It is discouraging that every year I am having more surgeries or I am in the doctors office trying to diagnose a new issue, especially because I just turned 24.
Thanks for reading my post, I know it is extremely long
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!
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.
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