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Hi Everyone,

For any of you who have been diagnosed with lupus, I am wondering what your initial symptoms were.

I initially went to my primary care dr. last September because I was experiencing strange rushing sensations, weakness and muscle pain in my arms and I was also having heart palpitations multiple times daily.

I didn't think any of that sounded like lupus, but the doc wanted to check it out anyway. She did the initial ANA test that came back low positive at 1:40 homogeneuos pattern and she also checked vitamin D which came back at 13.

Based on the ANA she sent me to the rheumetologist whose impression was that I more likely had some autonomic neuropathy due to 23 years of type 1 diabetes. However, he did run more tests to rule out lupus.

To his surprise the anti dsDNA came back at 17. He said that is a low positive result (with >=10 being positive). He is following my care now and maintains that I most likely do not have lupus or it is lupus but in the very early stages.

He is treating me with Savella which I am tolerating well but after 2 months of taking it, it is not helping with the pain in my arms and hands and lately I am starting to feel these same pains in my legs.

Any insight you can pass along will be greatly appreciated.
Hi and welcome! I believe anti-ds-DNA is considered very indicative of SLE, also that some rheumatologists "make the call" based pretty much only on it, even though the accepted diagnostic criteria call for a patient's meeting 4 or more of the 11 over time. (But, of course, I'm only a patient...!)

In your shoes, I'd consider whether to stick with your current rheumatologist, or seek another for a second opinion. Also, regarding kidney function: did the rheumatologist order urinalysis? If NOT, I think I'd immediately look elsewhere... especially given that you've had Type 1 diabetes for years.

Among my problems, I had all you cited, i.e., rushing tingling sensations, muscle weakness and pain, heart palpitations, and low Vit D. Note that while SLE can wreak utter havoc with the CNS, it certainly can also cause such lesser neuro-like symptoms.

Have you read the sticky posts = the permanent info posts at the top of the thread list? They contain info on tests, symptoms, diagnostic criteria, other reading resources. I hope you post again after you review them. Sending best wishes, sincerely, Vee

Thanks so much for your reply. I really appreciate the info you shared with me.

I'm glad you mentioned the urinalysis because this is one thing that has been in the back of my mind, wondering why the dr. hasn't tested my urine since this all began. I was assuming they must feel they can tell my kidney function from the blood work they have done, but yet I keep reading everywhere that the urinalysis is important. Do you know what it is they can tell from the urine that they can't tell from the blood in regards to kidney function?

I have also had so many other weird and new things going on with me over the past couple years, ie dizziness, horrible headaches, temporarily lost part of my vision and at the same time my thumb and index finger started going numb (dx at the er was a TIA) stomach polyps and B12 deficiency (pernicious anemia), vit D deficiency, benign tumor in the heel of my foot (which was removed), a small dot on my tongue that bleeds once in awhile) but now I'm worried that I'm becoming overly sensitive to every little thing my body does. Sadly, my Aunt died from kidney failure and complications due to Lupus 19 years ago, so I think about it way too much I'm sure.

I have read the sticky posts and reviewed the ACR criteria for diagnosing lupus. I think skin involvement seems to be a key in the diagnosis and the only rash I have is on the back of my neck and it itches. The dr. thinks it's probably eczema and not due to lupus. I also have the little dot on my tongue that has been there a couple years and starts bleeding on a rare occasion, but I thought it was probably due to the B12 deficiency and not considered an oral ulcer. I also have been borderline anemic with low red blood cells but hemoglobin on the bottom rung of normal (12) , but they thought this also due to the B12 deficiency. I have also had arthritis in my shoulders that I received cortisone injections for.

But now of course, the main thing giving me trouble is the pain in my arms and hands, which is unfortunate because I'm on the computer all day for a living. It's getting harder to get things done because of the pain.

Thanks Again for your reply, I really appreciate it and any further insight you might have after reading this post.

Take care,
Good morning, Cheri. One of my books discusses two kinds of SLE kidney involvement. But please read what I write here in the light of my being only a patient, and my NOT having first-hand experience of kidney issues!

Nephrotic syndrome. Kidney spills large amounts of protein and serum albumin levels drop very low. Is indicated by bloodwork showing elevated BUN &/or creatinine. BUT may also be indicated by urinalysis: the microscopic exam can reveal cellular debris called casts; and/or hematuria, which is small amounts of blood; and/or proteinuria, which is presence of protein.

WHICH TEST IS MORE USEFUL? This author says urinalysis is the most accurate test for lupus nephritis, and adds that the presence of protein is the finding that has the highest correlation to nephritis.

Uremia. I couldn't see much on this, other than what it is (kidneys failing to filter, so toxic materials build up). Also some physical symptoms: patients are fatigued, pale, and emit a distinct odor.

RE: your TIA. Did you read the "sticky" about antiphospholipid syndrome, the blood clotting disorder sometimes seen standalone and also seen in a fair # of lupus patients? Have you been tested for it?

To refine your questions for your drs., you could solicit more (meaning better!) input from people here who have had first-hand experience of kidney problems & antiphospholipid syndrome. To grab the attention of more knowledgable folks, you could start new threads with succinct titles. Looking forward to your next posts & to your making progress, and sending hugs, Vee

P.S. Urinalysis can reveal a 4th thing that suggests nephritis: leukocyturia = white blood cells.
My initial symptom was chronic fatigue, and then pain. I had a very low vitamin D level and low B-12 and after treatment my muscle weakness went away, either or it was the plaquenil that helped it go away. Can he do a test to check to see if it's neuropathy? I also have neuropathic pain and get shooting pains & tingling sensations, that can really hurt sometimes. Treatment for my MCTD does not help those problems. Has he mentioned trying you on Lyrica or neurontin? I'd just tell him the Savella isn't working and try something different.

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