Lupus or not Lupus?

Switch doctors!!

Thanks Becky, for responding. I will be starting the rituxan treatments with one treatment per week for the first 4 weeks. Thereafter that I don't know what the schedule will be. Can you please tell me the reactions you had to the rituxan treatments and how severe they were? Did rituxan help and how are you doing? Thanks again, Rose

@geegie Glad you’ll be starting rituxan. I’ve had no bad effects from the rituxan. I get 1000mgs twice a year (so 2 doses a year).
I also get 25 msg of Benadryl and 2 tablets of Tylenol before each dose. I have a very different AD than you and rituxan is probably standard for lupus. It is still a trial drug for my disease (which is inflammation in the brain). Good luck! And be sure to let me know how everything goes!

Thanks, Becky. I really appreciate your information and I certainly hope that your condition gets better soon. Take care and stay well Rose

Whew. Ok, so... I am doing everything I can to keep my sanity (not the word I typically use haha) together right now. I'll do my best to keep the background stuff as short as possible, but I can write novels when I'm stressed out. I apologize in advance lol. But yeah, on the verge of tears at the moment because I'm reading MY story in other people's stories. I'm so exhausted.

I have been trying to find out "what is wrong with me?!" for about 7 years or better. At first, it was "just" some minor low back pain. I've seen half a dozen ortho/neuro type specialists and my primary numerous times (to no avail) over the first 4+ years for JUST that and the progressing symptoms that have come with it in that time. Currently, not including why I'm writing now, I am diagnosed with: meralgia paresthetica (both legs), pudendal neuralgia, and Lumbar Radiculitis. So basically, everything from the waist down is really bad. In the last couple years, I had an SCS installed. I went in for programming several times over the course of 9 months or so, because it would keep adjusting and being less effective, until finally they called in the Engineer from Texas, he worked his magic, and the next time I went in... same result - in essence, the zappies were hitting me in the ribs and making it uncomfortable to breathe. So they had me go in for a 2nd surgery to move the leads. which resulted in the exact same thing, only now it's worse. It's been 5 months.

But the real reason I am here is because, for the past 3+ years, I have been suffering from steadily worsening chronic fatigue. Along with my chronic pains, it's just gotten to the point where I don't even want to get out of bed. I forced myself to make a wellness visit appointment with my primary (insurance vehemently insisted). I dislike seeing her, because it usually ends up being futile anyway. But, for some reason, she actually listened this time and ordered a whole giant panel of bloodwork. 28 tests. Doc told me it would take about 2 weeks and they'd call me, but hopefully nothing bad came of it. I told her, "I don't care if it's bad. At this point, I want an answer. I can't fix it if I don't know what's broken." I went to the phlebotomist the following Monday and he took 10 vials of my blood. I also decided to do an initial search of what all she ordered and then left it alone for a while. Last week, I decided to look into Lupus, because I didn't really know much about it (I've researched a LOT of things because of all the suffering I'm going through, trying to find answers).

I am 95% sure that I have Lupus. There are even symptoms I had no idea were associated with anything, let alone Lupus specifically. I don't have a noticeable red rash on my face, but my skin is definitely flaky ALL the time in that same area, along with what I think is some sort of eczema inside my ears and possibly my scalp. I can scrub the skin off my face and a few hours later it's right back to being flaky again. Joint and muscle pains? Wow. Ok, my joints and muscles almost all over are in pain, most noticeably in my arms and legs, and recently in my neck. I admit that I had been focusing solely on my legs, because they've been the worst off with the low back/nerve stuff, but it reminded me about my knees. I actually had an Ortho tell me that the sharp pain in my right knee (which was why I was there) was torn ACL and had me in surgery 2 weeks later. Except... I woke up from that and was told that my knee had healed itself and he didn't do the surgery, then sent me packing. Healed itself. In 2 weeks. HAHAHAHA. Riiiiight. I am now having that same pain in my LEFT knee, and these sharp pains happen rarely if I sit in same position for too long, and almost always at night, after I've been asleep for a little while. They wake me up and I am instantly crying. No amount of staying still, moving, rubbing, or anything makes it go away. I have to just wait until it decides it's done stabbing me. And, I urinate frequently and have done so for years now. I attributed it to the pudendal neuralgia once I had that diagnosis, but it's been happening for quite a long time. But, if it's "something else" like Lupus, I'm worried that it isn't getting addressed. Then there's the noticeable brain fog, inability to recall words I KNOW I know, going totally blank when I am talking about something because I forgot what I was saying... cognitive dysfunction anyone? Ugh. And don't even get me started on Anhedonia. (I have MDD/anxiety officially).

Aaaanywaaaay, my bloodwork came in this past Monday, I did not get called. I called yesterday morning and got a call back later that afternoon. I was told that my Vitamin D levels were "a little low" and to get an OTC VitD Supplement. Other than that, everything was great. I started crying, because at that point I REALLY wanted them to tell me SOMETHING - a definitive, tangible ANSWER... so that plans could be made, actions could be taken, and I could maybe have a better quality of life, even if it took a while... No such luck. Lady on the phone seemed a bit put off when I asked, "Well then what the he-- is wrong with me?!" She said she'd send the doc a note and call me back with that. It's been 24 hours, not that I expect it to be that quick (it never is), but I've been in a whole fog waiting. I finally went into my patient portal this morning and lo-and-behold, there are my bloodwork results. I don't have a printer, but I saved it as a PDF and tried to take a nap (oh yeah, sleep has been evading me lately).

Sooooo... I think whoever "interpreted" the results is probably wrong, doesn't know what they're looking at, or... I don't know. I don't understand a lot of this, so I've been looking things up and well... here I am in Mayo Connect pouring my life story out because I am desperate for answers, wondering if anyone can READ these results and tell me I'm not crazy. Well... at least not crazy for having Lupus symptoms and being told I am fine.

😐 Again, sorry for the length

@thecyborgenchi Hi, and welcome to Mayo Clinic Connect. I think you’ll find that everyone in this group is very helpful and should have some answers for you.
I, also, have an autoimmune disease and know how hard it can be to get diagnosed. Just don’t give up! Have you seen a rheumatologist? Most of them are specialists in AD… you will need to get a referral from your doctor, first.
While you are waiting for an appointment, you can start to get yourself together/organized. Make a list of symptoms that are from this year and are still bothering you. Keep your list concise and to the point. Also prepare any questions you may have. One thing, be sure not to complain about the healthcare system and/or other doctors. They already know it can be tough.
Think you can start making a list today?

Hi Becky! Thank you for responding. I have not seen a rheumatologist. We have a rheumatology department at our local hospital, but there's only a visiting NP that specializes in rheumatology, and she practices at another office that's over an hour away, so... I'm not sure if that's the best choice or not. I basically live in a black hole when it comes to quality "health" care or specialists. I have to stay in the state, because of my insurance, and typically any referral I receive will take me 2-3 hours away in any of 3 directions. So it's an all-day ordeal. But I guess it's a start. I had planned to call my primary's office tomorrow since nobody called me back today, and I will ask for a referral.

And yes, I can definitely start on a symptom list. Concise and to the point I can do, but it will be lengthy. I don't even know where to start with questions, but I'm sure some things will come up while I make the list. I am also open to suggestions.

Again, thank you. I feel like I'm going crazy and I am SO exhausted having to work so hard to find out what is wrong. 7 years of starting and stopping repeatedly has worn my resolve down. So, I deeply appreciate you reaching out and pointing me in a direction - hopefully it's the right one and I can get some answers AND help soon!

thecyborgenchi, Bless you sweet lady. I understand. You have not mentioned fibromyalgia. Has that been mentioned at all? It can cause severe fatigue and pain. The doctor will palpate your trigger points and then do bloodwork to rule out Lupus, RA & MS. It is so difficult to get a diagnosis for Systemic Lupus because your numbers have to be very elevated. I have to ask, have you had COVID? Covid ramped everything up in my joints, etc., Also, thyroid issues can escalate arthritis. Please have a complete thyroid panel done. It's so frustrating when you can't get a diagnosis to go along with your symptoms isn't it? I have been there. I am still not getting a definite answer from my Rheumatologist for borderline Lupus and was told by others that is normal. I had more bloodwork done yesterday with the rheumatologist and am awaiting results. I think your numbers for inflammation have to be out the roof before they can definitely diagnose you. Sometimes, doctors need to go by symptoms versus numbers and"look outside the box". A low D3 can cause pain and fatigue and I would definitely get on a good Vitamin D3. If you B12 is low you can been exhausted....that happened to me as well. Praying for you and I am so sorry you are going through this. Don't lose hope. Keep me posted. I care.

Nope... you're not crazy, just stressed!
You are experiencing the same thing that many of us have
also lived... many years before the diagnosis. You are NOT alone.
Becky has given you great advise: yes, I too tend to 'expond' when stressed, because I wanted to explain everything so they would understand! But.. the opposite is required.
If you are old (like me) you may remember an old TV show, where the exhausted, grumpy cop keeps saying.. "just the facts ma'am, just the facts"
This is sooooo true for your appointments. Remember that the job of finding the diagnosis is theirs... your job is to clearly, and calmly state your symptoms. Can you take a trusted person with you to your appointment; whose presence will keep you grounded, and help you feel calm?
I do wish for you to find a doctor whom you can work with. This road is a long one... but heavily travelled. Plz let us know how you get on.
All the best!
There are many tests for the myriad of autoimmune diseases.

I had 28 tests done. I'll list them as I see on the paperwork, many apologies - it's lengthy 😀 I will also put the results of any of them that showed up as anything other than normal in parenthesis. I was never tested for Covid when I believe I had it, but that is included in the blood work below. Side note: I don't know if I'm allowed to throw this info out there, but at this point I don't mind that people see my info, so... *shrug*

TSH, serum or plasma
CBC w/auto diff (of the 20 parts of this: platelet count was high)
T3, free, serum or plasma
T4, total, serum
vitamin B12, quant, blood
SARS CoV 2 IgG Ab, QN IA, serum or plasma (1 part: high - confirms I had Covid, if I'm not mistaken)
estradiol, serum
progesterone, serum
dhea-sulfate, serum
testosterone, total, serum
Ih + FSH, serum
lipid panel, blood (of the 16 parts: HDL cholesterol low, LDL particle number high, LDL small high, LDL medium high, LDL peak size low, hs CRP high)
HbA1c (hemoglobin, A1c), blood
insulin, serum
C-peptide, serum
CMP, serum or plasma (of the 18 parts: urea nitrogen [BUN] low)
urinalysis, dipstick
CK (creatine kinase), total, serum
magnesium, serum or plasma
vitamin D, 25-hydroxy, total, serum (1 part: low at 23 - but I knew this already)
iron + TIBC + ferritin, serum
uric acid, serum or plasma
erythrocyte sedimentation rate by westergren method
ANA (antinuclear antibodies) panel, serum (of the 3 parts: ANA screen - ifa positive/abnormal, ANA titer - 1:40 high, ANA pattern - nuclear, speckled/abnormal)
rheumatoid factor, qualitative, serum
CRP, high sensitivity, serum or plasma
anti-C1Q Ab, serum
systemic lupus erythematosus profile
lupus anticoagulant, plasma (of the 4 parts: anticoagulant not detected, drvvt screen high by 1 point)

And there you have it. Again, I'm not a professional by any means, but I like to think that I am intelligent enough to understand things, especially when I do the research that explains what it means. I've looked up the results of every one of these and the one that worries me the most is the ANA panel - it does NOT say normal, soooo... ?! According to what I've read, those results are indicative of lupus, if nothing else, further testing. I just called my doctor's office (they never answer) and left a message, telling them I want a referral to a rheumatologist, and provided the name and location of the one I chose that my insurance covers. She is 2 hours away, but I expected that.

Thank you for responding, by the way. I am finding that the support I'm receiving here is helping tremendously. I start crying every time I see someone has responded with kind words, encouragement, resources... it doesn't matter. My feelings of "I must be insane" start to go away, and that's important to me. I'm NOT crazy (not in this regard anyway lol). I'm NOT imagining these symptoms. My quality of life has tanked and I just want answers and some goals to work toward getting better, you know?