Lupus Board Index: Confused & concerned about combination of systems: Possibly SLE? (2024)

Hello everyone who reads this,

I am 39 and have been experiencing various conditions over the past few years. These have largely been viewed as unrelated until I happened to see a different doctor within the same practice who took notice of my 1.5 written pages of symptoms and my demands for some testing. Now six months later, we still do not have a diagnosis and I am getting pretty frustrated about it. I am tired of inexplicable symptoms and pain, "normal' test results and NO relief.

On a recent stint in hospital (after I presented with sudden onset of rash, severe abdominal pains, shortness of breath), the specialist physician suggested after several days of testing, CT scans etc, that I might have SLE.

An overview of the symptoms are:

[B]Joint pain[/B]
I have been experiencing knee pain and joint stiffness, which effects my mobility. Walking up stairs is extremely painful and my knees crunch to the point of making other people cringe when they hear it. My knees give way randomly, I can't kneel at all or even bend down properly. The docs originally suggested knee reconstructions for both knees. Now this joint pain has spread to my left elbow and more recently my right wrist. My joints randomly swell and throb with pains that take my breath away with their strength. My Doc prescribed me Celebrex, which did help, but then took me off them once we found my liver issues.

[B]Skin Rashes[/B]
I have irregular occurances of skin rashes after I am exposed to sunlight. This rash appears under my armpits (itchy, scaly, red, turns brown) and has been persisting for over 3 months now. Doc gave me a dose of antibiotics for that, which didn't really help. My face gets small bumps all over my forehead, chin, eyelids, hairline and sometimes my cheeks. After going in the sun I break out with acne. More recently my lips puff up with tiny white bumps within minutes of sun exposure, then sting, crack and peel for the next few days. My hair is also thinning around the scalp line, and becoming slightly patchy.

[B]Liver issues[/B]
I was also diagnosed with non-alcoholic Fatty Liver Disease, but I have now eliminated that through massive diet changes and weight loss. However I have a focal mass / lesion they found, which has grown from 11mm to 16mm in three months. Doc says this could be an error in the first measurement, so we are now waiting to see if it grows any more. Could possibly be hemangioma, but if it is growing, that may present a problem.

For almost a year now I have had regular episodes of dizziness and numbness that shoots across the right side of my face when I walk, turn my head, chew, brush my teeth and when I hear loud noises. My lips tingle and some days I lose some of the feeling in my cheeks. I was taken to hospital one time because the symptoms were so strong that they suspected a stroke. I was diagnosed with "Trigeminal Neuralgia". Although much milder, the symptoms still exist to this day.

[B]Anxiety & Depression[/B]
The doc put me on Effexor 150mg. It helped at first but then ended up making me so sick. I took them for a year. I gained over 20 kgs in under 4 months, had severe sweating issues, suicidal thinking, worsened anxiety, mood swings, metallic taste, increased thirst, aches and pains. My new Doc gradually weaned me off them. She thought all of those symptoms were possibly seratonin syndrome. now that I am off those meds I feel a lot better, although some anxiety and the night sweats remain.

[B]Eyesight issues[/B]
More recently the optometrist reported that my left iris is thinning and that I am developing pigmentation spots around my iris. My binocular vision is also deteriorating. I have decreased night vision, pain in my left eye and frequent headaches. There are also early signs on glaucoma. I have also been experiencing 'strobe' like episodes where everything in my sight flickers. This has been going on for many years. I have been referred to a specialist, however my optometrist says that this degeneration can be indicative of systemic / connective tissue disease.

[B]Vascular swelling[/B]
More recently I have had episodes of swelling in my left ankle and shin. It swelled 2cm larger than my other leg and was extremely painful to touch. Please note I had no traumatic event that could have caused the swelling. The Doc ordered scans for Thrombophlebitis and DVT, which came back normal. So still to this day, this swelling is unexplained.

[B]Test Results[/B]
Recent test results for presence of Lupus anticoagulant were negative. All other Liver funtion tests have been "normal", except for elevated red blood cell count and ESL level of 35. This is very frustrating because I am not imagining these symptons, nor do I enjoy experiencing them, so it is disheartening to keep getting 'normal' results, because it leads us nowhere.

Also I should mention that my Aunt has Lupus and my grandmother died from Lupus-related complications. My other Aunt is riddled with Rheumatoid Arthritis.

Other symptoms from the past include:
• frequent miscarriage. I am 39 with no children because I have lost five over the years, with two of them being in the second trimester.
• arthritis pains in my fingers
• frequent chest pains, especially on the left hand side.

So there you go, sorry for such a massive read! I am on the government waiting list to see the Rheumatology Specialist at the hospital, but god knows how long that will take. Any insight from this community would be much appreciated.

Thank you for your time :)

Lupus Board Index: Confused & concerned about combination of systems: Possibly SLE? (2024)


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