Lupus has been ruled out for me BUT I have a question

My rheumy has decided that there is not enough evidence for a Lupus dx for me.

She is sending me to a neurologist to look into my cognitive issues, because they go above and beyond fibro fog.

She took away the fibro dx, and said likely Lupus, and then she took Lupus off the table, and not says fibro likely the reason for the rashes, and achiness.

It's been a rollercoaster ride, and it continues. I guess that's how it goes trying to find answers.

I just wanted to update you all, and say thank you so much for all of the advice, and support along the way.

Post Edited (Jake'sMom) : 10/5/2015 3:54:18 PM (GMT-6)

Are there any here who have both Lupus and fibromyalgia?

I woke up with mouth ulcers, and a sore in my nose again. I have this nagging feeling, and I just want to talk it out.

This was my second Rheumatologist, and I don't want to go looking for trouble, but I want to understand why my body doesn't seem to react the way other people with fibro claim theirs does. I want to understand why I keep having these "flares" of symptoms that seem so very much like Lupus.

Thank you.

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Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

Couch, it would be a third rheumatologist. sigh

I also get psoriactic type rashes on my elbows, and when it happens, I have joint pain in those elbows.

I'm so tired of the search for answers. Feeling so defeated.

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Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

I too have lupus and Fibro. My fibro was dx'd before my lupus, way, way before my lupus was DX'd. It seems common that Lupus folks also have a Fibro Dx' too.

The two of them are so alike it's hard to tell which one is flaring up. I can tell that in my experience, when I'm flaring and it's a fibro flare up, if my Rheumy has me take prednisone it does NOTHING to help me at all. Now a Lupus flare up the higher the steroids the better I fell.

It can be very frustrating trying to figure it all out. Some folks with Lupus get their DX and treatment on the first Rheumy maybe second. Then there are those, like me, who it took forever for the DX and treatment, 13 years to be exact.

Lupus is known as the disease of a 1,000 faces and it truly it. This is hard to handle the disease while getting first DX'd, it helps to have a strong support system, while you go through this process.


I sincerely hope that if you need to see another Rheumy you'll be able to get them to listen and most importantly they begin to listen to you and treat your symptoms and getting you out of this terrible flare.

I hope you get some answers soon and let us know how you're doing. Hang in there we all understand and are here for you.

Hugs,
Barbara

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DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Also, I forgot to respond to Lynwood. There doesn't seem to be a chapter in Oklahoma. I'd have to travel to Dallas. I have so many health issues going on, and driving to another state is too overwhelming for me.

I am going to have to see a nephrologist, because I have blood in urine, my BUN/Creatinine levels are high, and my potassium is high. I may have mentioned this in previous posts. With my kidneys acting up, I am really questioning if I actually do have Lupus. Doesn't it cause damage to organs such as kidneys?

It could be completely unrelated, but I have no history of kidney disease in my family. I'm not sure what could be causing this, because 6 months ago, my potassium was actually low.

I just really don't know whether to push harder or to just let it go, deal with what I have on my very full plate, and go on.

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Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

Well, I've had the urine test, and it shows blood. I've had the blood test, and it shows high creatinine. I have not had a kidney biopsy.

I'm seeing my primary doc about this issue tomorrow. I'll ask her for a referral. I mentioned these things to my current rheumy. I even printed out my chart from the patient portal showing all of my lab results.

Thank you for your help.

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Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD