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Please help - Symptoms point to Lupus/Addison's disease, but negative bloodwork

Age: 29
Gender: Female
Ethnicity: South East Asian
Height: 158cm / 5’2”
Weight: 52kg / 115 lbs
Smoking: No
Drinking: No
Medication: Yasmin (Drospirenone 3mg, Ethyinylestradiol 0.03mg) for PCOS, Oratane (Isotretinoin 10mg) for cystic acne, antihistamine for allergic reactions
Symptoms:
1. Fatigue
2. Hair loss
3. Joint pain especially in knees
4. Frequent headaches and lightheadedness
5. Recurrent fevers (7-8 times a year)
6. Recurrent diarrhea (once a week)
7. Recurrent swollen eye (7-8 times a year)
8. Recurrent UTIs (4-5 times a year)
9. Recurrent cold sores (4-5 times a year)
10. Recurrent angular cheilitis (4-5 times a year)
11. Easy bruising
12. Recurrent malar rash (7-8 times a month)
13. Eczema
14. Excessive sweating
15. Body constantly feels hot to the touch
16. Recurrent swollen lymph node at groin (once a month)
17. Petechiae


Other issues:
1. Hypermobility since early childhood
2. Keratosis pilaris
3. Flat feet
4. Retroveted uterus
5. Mild scoliosis (10 degrees)
6. Osteoarthritis
7. Varicose vein

Medical History:
• 2003: Tonsillectomy surgery
• 2008: Maxillofacial surgery to correct class III malocclusion
• 2010: Polycystic ovary syndrome (PCOS)
• 2014: Helicobacter pylori infection
• 2015: 2 fibroadenomas in right breast
• 2016: Balloon sinuplasty and laparoscopic Nissen fundoplication (hiatal hernia, GERD)
• 2017: SLAP type III repair surgery (left shoulder)

Family history:
1. Father: Diabetes
2. Mother: Meniere’s disease
3. Paternal uncle: Motor neuron disease (MND)
4. Paternal aunt: Breast cancer


I hope that someone here can help me. I’m a married 29 year old female with no kids. So I have been experience extreme fatigue for over 2 years. It has been so exhausting that I am unable to work a 9-5 job and it is difficult for me to function normally. There are many days that I can’t even get out of bed. Exercise only makes it worse (I used to be physically active during college but had little time to exercise when I started working in end of 2014-March 2016).

I’ve also been experiencing hair loss especially around the temples and joint pain. The pain around my knees has been a constant dull pain but from time to time there’ll be a sharp pain. I had a SLAP type III tear in my left shoulder in early 2017 but that has since been repaired surgically. I do not know what was the cause of the tear since I have not been physically active for years. However the shoulder pain has resurfaced again these past few days. Besides that my whole body aches and I always get bruises.

I am always sick. I get fevers 7-8 times a year as well as recurrent swollen eyes, UTIs, cold sores and angular cheilitis. It also takes a long time for me to recover. For instance, in April I had a fever, throat infection and flu that took 2 months and 3 courses of antibiotics/medication to go away. I also get diarrhea about once a week for no reason. I’ve always had digestive/gastro issues since I was a kid and after throwing up on an almost daily basis, they discovered that I had hiatal hernia and GERD in 2016.

I also get random rashes on my body as well as a malar rash on my face. Besides that I have tiny red spots on my body from time to time that my GP said it’s petechiae.

I have went to several endocrinologists who tested my hormone levels, thyroid functions including Synachthen and 17-OHP tests, 24 hour urine protein test, ESR, CRP, B12 (which I do not have a copy at the moment) but everything came out fine except my vitamin D levels which was low and caused my PTH to increase slightly. I have been taking vitamin D3 since and my levels are back to normal. Besides that I have tested for lupus and autoimmune diseases and everything came out negative as well including ANA.

I have been Googling a lot and one of the things that popped up is Ehlers-Danlos Syndrome. Some things do fit like the hypermobility, joint pain, fatigue, easy bruising. I tried the Beighton score and I scored 7/9. I also have a positive Walker sign and Steinberg sign.

However I do not think I will pass the 2017 hEDS diagnosis criteria since I only have a few of Feature A of Criterion 2, and most importantly, I do not have stretchy skin. Besides that, I don’t think EDS would explain the recurrent fevers and infections as well as hair loss. Regardless, I have made an appointment with a clinical genetics specialist and he is only available in two month’s time. I’ve also written down other medical issues that I have that seem related to EDS like flat feet.

Please help me, I’m at my wit’s end. I have attached photos, my blood test results and medical history in case it’ll be useful. Is there anything else I should look into? What could it possibly be? What else can I get tested for?

Blood test:  https://imgur.com/a/oo67GiF
Reports:  https://imgur.com/a/2hghX4X
Symptoms: https://imgur.com/a/6KtDcvl

Thank you.
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