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Does this sound like lupus?

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Discussion Starter #1 (Edited)
I have yet to be diagnosed over seven years of on-and-off symptoms. From what I have read, all my symptoms (or the majority) correlate with lupus. However, my rheumatologist seems to think differently despite what my mother and family doctor believe. I was told I may never be diagnosed unless I get significantly worse.

My symptoms include: nerve-like pain in soles of feet and palms of hands (so bad I describe it as "walking through fire on broken glass"), arthritic pain in wrists and ankles at all times - but worsened during a flare-up, swelling in joints, poor circulation, mottled skin, weakened/inactive immune system (secondary immuno-compromised), extreme sun sensitivity (sun stroke-like symptoms and slightly discoloured to brown/tan skin that is hard/dry), the butterfly rash on my face, bleeding lesions, iron deficiency, muscle pain/weakness, uncontrollable full-body twitch, stutter, memory issues (forgotten words, lose my place in conversations), extreme fatigue - even outside of a flare-up I will sleep for up to 12+ hours.

Anytime an illness has been around my town, I have caught it. I've also had chicken pox and shingles within a year of each other (I'm 17 now, young for shingles). I had a strain of mono as well. It takes a long time for me to fight off flu and cold symptoms, while most people can still function with a cold, I will be so ill that I can hardly move from bed and it will take me weeks to fully recover. Oh, I also have had hives that covered me from head-to-toe. When I first got sick, it seemed like my immune system flew away. I had the flu and hives. Every time I'd have a flare-up after that, I would get some form of a rash near the joints that ended up in pain.
 

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Hi Sara and welcome to the forum. You have obviously been through a frustrating time. Am I right in guessing you have seen a paediatric rheumy during this time? What are his suggestions on what is wrong? If you have an iron deficiency, then bloods have obviously been done. Do you have any results? Can I ask where the term secondary immunocompromised comes from? Is that from bloods? I am curious! Sorry to ask more questions than answer, usually one of the mods does that :lol:

You obviously have something going on and I wondered what blood tests he had ordered, what the results were. Why he hadn't diagnosed any condition, not just lupus.
 

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Discussion Starter #3
The rheumatologist following me is paediatric, he's supposed to the "the guy" in my province as far as things like this go. He at one point suggested it was some sort of mental problem rather than physical, it takes months to get in to see him so I'm rarely in an active flare-up when I do get in. My results are inconclusive to a diagnoses of anything from what I've been told, I have the iron deficiency (which is quite extreme in my case), elevated ANA markers - which was only just tested for my last appointment, and an elevated inflammation marker that starts with 'E' - which has been on going at different levels depending on the flare-up and if I'm actively in flare-up, but always there. When I first got sick they did a procedure that allowed them to single out my white blood cells and track them and it was found I have a slight white blood cell deficiency and that they were very active in multiple points in my body. The secondary immunocompromised was basically told to be as there isn't any way to deny my immune system is weakened, the did an exploratory digestive tract biopsy as well and it also confirmed this. Since my immune system isn't weak "just because" there has to be a cause, which makes it secondary rather than primary. I have a family history of lupus but my rheumy doesn't think I fit enough of the symptoms so I've been tested for many different thinks. We keep coming back to lupus over the years, but since he can't find a specific marker and my others are always just slightly elevated when I get my blood tests, he won't say unless I get severely worse.
 
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