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Old 06-29-2013, 08:56 AM   #1
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Question Lupus?

Im fairly new here and I have a few questions. For quite some time now I have been having joint pain, pain when I breathe in, Ive been off and on anemic for as long as I can remember, Ive had blood and protein in my urine the last three times Ive been to the doctor ( in a 6 month period of time, which the nurses told me nothing about) Ive also had this weird rash that comes and goes on my hands that look something like ringworm. I recently changed docs and I was explaining to her all that has been going on, she's the one who told me that Ive had the blood in my urine the last few times. I have a best friend who has lupus and I have many of the same symptoms she does so I asked the doc to test me for it so she did a full blood work up. She also told me that if I had blood in my urine again she would send me to a urologist because there no infection present. So I got my blood work back and my ANA was positive titer was 1:80 blood and protein still present +2 RF was neg and surprisingly I WASNT anemic this time. The NP decided to retest me and told me not to freak out as she gave me some literature on Lupus. I get my results from the blood work next fri and I am freaking out. Ive been reading up on the disease and I have alot of the criteria physical as well as blood work wise. Can anyone give me some insight? Can I be diagnosed with a titer that low? Has anyone else out there been diagnosed with a titer that low? Im terrified & confused

 
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Old 07-01-2013, 04:44 PM   #2
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Re: Lupus?

Hi & welcome, Lilshort. I'm glad you found us. I hope this isn't lupus, but if it is, please know that many people fare pretty well in this day and age.

Have you seen the sticky posts (permanent info posts) located above the user posts? One contains diagnostic/classification criteria for systemic lupus. You generally (but not always) must meet 4 or more of these.

ANA alone doesn't diagnose lupus, or anything, for that matter. It's "fuzzy", actually, because it can elevate in quite a few conditions, also due to a passing virus or infection. 1:80 is the second-lowest level reported; 1:40 is the lowest. Your level isn't very high, but more to the point, it alone doesn't point straight to lupus because, well, it's "fuzzy".

When ANA is meaningfully elevated & symptoms are present, "ANA subtype" tests are run. Only 2 of these are considered highly specific to lupus: anti-ds-DNA and anti-Sm; both are listed in the criteria. But others can be seen, too, such as anti-Ro, anti-La, anti-RNP, antiphospholipid, etc. (There are a bunch.) Get copies of your labs, look for items such as these, and drop a post if you want to discuss.

What kind of anemia have you had in the past?

Re: rash on hands that looks like ringworm. There's a "sticky" on rashes. Does anything seem to fit? If you could decribe them further, maybe we could suggest which one(s) on the list to focus on. For example, do they itch? Scar or depigment? Expand into circles with clear centers? The best way to know whether a rash is lupus-specific is via deep-punch biopsy with immunofluorescent stain tests; this would be done by a dermatologist or dermatopathologist; but this is usually done only if add'l proof of lupus is really needed.

Re: protein in urine. Once again, this can happen in things other than lupus. e.g., certain meds (even NSAID's), diabetes, high blood pressure, polycystic kidney disease, etc. In your blood labs, have BUN or creatine been abnormal?

Thyroid disorders can cause similar symptoms, e.g., fatigue and joint pain, and they also can elevate ANA. Have your thryoid levels been checked?

I mean no disrespect, but if lupus starts to look more likely, I hope you see a rheumatologist (they know lupus best), who'd then refer you to a nephrologist (etc.) as warranted. Frankly, I'd be miffed if my doctor & NP didn't mention multiple PREVIOUS instances of protein in urine. Why didn't they, I wonder?

Before being diagnosed, I read too, but reading calmed me because I could see how many problems I *didn't* have. So as you read, keep that thought in mind, OK? BTW, many libraries have hardcovers written for patients. You could borrow, then decide later if you want (or need) to buy any. Hang tough & post any time the mood strikes, we're always here. All my best to you, Vee

 
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Old 07-01-2013, 06:10 PM   #3
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Re: Lupus?

Thank you so much for your reply Veej. Let's see where do I begin, well the doc did a full blood work up. All the results were normal except the ANA and the urine test. There was no uti, kindney infection or kidney stones. The doc said she'd refer me to a urologist but when the ANA came back positive, then she said she'd hold off on that and retest me. Depending on those results she'd refer me to a rheumetologist. The rash Ive gotten has been off and on and it starts off as small as a bug bite and got as big as covering my whole hand. It has the look of a ringworm clear center raised edges. When I have them my skin is very dry, itchy and flaky & nothing relieves it. They dont scar which was very surprising because when they're active they are horrible. I was very self conscious about them (they were on both hands). I feel some irritation on them now and Im keepin a close eye on them to see if any thing comes. I also have been gettin frequent mouth sores, I currently have an ulcer on my tonsil and I have no idea where it came from. I had the dentist where I work look at it and he says its not strep throat but gave me rx for an antibiotic just in case it's an infection. I get the results of the recent blood test on Fri and I am very nervous Ive been reading so much and so many things are fitting together in my head. I also have the blue finger & toenails when Im cold, I also have a vitamin D deficiency, Ive been having hair loss for a while. I decided to go natural because I was thinkin it may be because of the chemicals but I havent had chemicals in my hair since Mar and Im having hair loss again. A dime sized area on my hair line where the hair is gone, my joints hurt like crazy especially when its cold. My shoulders my elbows, wrists, knees and ankles and the backs of my heels (if that makes sense). I have night sweats that are so bad that I have to sleep with nearly nothing on to keep from being soaking wet when I wake up. Im sorry this is so long but Im completely terrified, I have a best friend who has Lupus and I see the struggles she goes through and I dont want that to be me. But at the same time I want an answer for why I feel this way. Ive started a new job where Im on my feet all day and Im exhausted after work to the point where I can barely function when I get hm. It's so bad I sometimes have to take a nap just to be able to get up and take a shower. I just dont know whats going on and Im scared.

 
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Old 07-02-2013, 12:46 AM   #4
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Re: Lupus?

Lilshort, I'm glad you wrote back. It's interesting info to those who've been thru the confusion. I'm just a patient, of course, but here are some thoughts.

KIDNEY INFECTION. Blood labs can't really diagnose infection. General inflammation markers like ESR and CRP may or may not elevate; and even if they do elevate, they don't convey the KIND of infection until more specific tests &/or symptoms help a doctor narrow it down.

KIDNEY STONES. Blood labs can't diagnose. X-rays, kidney/bladder ultrasound, and 24-hour urine collection are the tests usually done. (I've had stones multiple times, so I'm pretty solid on this one. And you can have small stones, like coarse beach sand, without knowing it.)

RASH ON HANDS. Hmmm... When they first erupt, do they look like plump raised mosquito bites, then expand into perfect circles with central clearing, then expand even further & lose circularity? I ask because I had many years of lesions that did just that; they were finally diagnosed as Subacute Cutaneous Lupus Erythematosus, the annular (targetlike) form. (FYI, there's a second, different SCLE called papulosquamous or psoriasiform, which looks like psoriasis but isn't.) Both SCLE rashes are descibed in the rash "sticky".

My SCLE annular lesions were mostly on upper arms and back, plus a few on upper thighs. Mine didn't itch, but my skin got dry. The auto-antibody seen most often (but not always) with the two SCLE rashes is *anti-Ro*. Both SCLE's are extremely photosensitive. I think the differential diagnoses for the SCLE's include ringworm, PMLE (polymorphous light eruption), plus I'm not sure what else.

But other autotimmunes can also cause rashes, some very itchy, e.g., thyroid disorders, Celiac, UC and Crohn's. (I find this odd b/c we don't typically think of rashes when we think of these other conditions.)

MOUTH SORES can occur in lupus but in other things as well. Ditto with HAIR LOSS, which is common in lupus, in hypothyroidism, etc. Another cause of hair loss in lupus is discoid (scarring) lesions. Hair loss from discoids can be permanent, so, until you know more, you may want to protect your scalp from sun with hats (of dense material, not gauzy or porous) with broad brims.

RAYNAUD'S can turn fingers, toes, etc. any combo of red, white, and blue. It can occur with lupus, with other conditions, or all by itself.

VITAMIN D deficiency is non-specific and can also be caused by inadequate sun and dietary inadequacies. FYI, Vit D deficiency alone can make you feel lousy. (Mine has tanked because I must avoid sun, so I take a D3 supplement.)

In people with chronic inflammatory conditions, VITAMIN B-12 can also deplete. This form of of anemia is called "the anemia of chronic disease".

PAIN. My bad areas are the very ones you list, but once again, there are other root causes possible. (The bottoms of my feet can feel like nails have been driven thru them.)

NIGHT SWEATS. I imagine many causes are possible, incl. thyroid and perimenopause. (You didn't say your age.)

BUT IS THIS LUPUS? I can't know but would want my doctors to look lupus... also other "single bullet theories" like thryoid & other "close cousins" to lupus (MCTD, etc.)

ANOTHER READING SUGGESTION. Look at the last half of criteria sticky, for the section called "alternative criteria". Do these ring bells? (I matched on most.)

I know you're worried. But you're clearly intelligent and are doing prudent things (reading, posting, following thru with your doctors), and I sense you'll get this figured out. Keep at it & stay in touch, OK? With hugs, Vee

Last edited by VeeJ; 07-02-2013 at 01:11 AM. Reason: hadn't finished

 
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Old 07-02-2013, 07:05 PM   #5
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Re: Lupus?

Thank you so much Veej Im trying to learn as much as I can it makes me feel like Im somewhat in control lol. Im also trying to make sure that Im prepared for the news if there is some. KInd of what started all of this recent craziness was me ending up in the er with stomach pains, and a feeling of my bladder not being completely empty when I use the restroom. While I was there they of course took my urine and they found the blood, they immediately sent me to have a cat scan to make sure it wasnt stones. After the ct the only findings were a fibroids (which I already knew I had). They sent me on my way with some pain meds, an excuse for work and instructions to follow up with my doc. That's how I ended up at my docs and getting tested for lupus. I read the criteria on the sticky and I have the blood and protein in my urine, the positive ANA, the joint pain, the hair loss, the anemia (tho not currently), the skin rashes, mouth ulcers/sores, and I also have the sharp pain in my chest when breathing in. Ive had that for quite some time now, some mornings it's extremely bad and I can barely breathe when I wake. It feels as if Ive fallen asleep with a ton of bricks on my chest. Ive had these joint pains since high school the docs at one point dx me with lyme disease but that was when I was 17 Im 30 now and I still have the joint pains. I missed alot of days of school because of it but I took antibiotics and I thought that was the end of it. I didnt mention this to my recent doc and she didnt mention anything to me concerning Lyme when she read my recent results. I thought today about how long my ANA could have been positive. Being that its not a test often given it just makes me wonder. I was admitted to the hospital after going in for lack of feelin on my left side. They suspected I had a mini stroke and they did alot of tests on me, so Im going get those tomorrow and see what they actually said. So many things are adding up that its really scary because Im like if it's not lupus what is it. Ive been in pain for so long I dont even remember what it feels like to not be in pain. I often sit and wonder how other ppl feel on a regular basis. Me and my husband compared fingernails yesterday when we were in the car. I was freezing and my fingernails were blue almost the entire nail and his were the regular color it really scared me because Ive never compared them to anyone elses. Im just tired of being in pain, I cant even play with my children like I want to. I force myself to go out on the w/e and do things as a family because I feel its important but I dont think any of them (including my hubby) realize how much it takes out of me. He did say he'd take care of me and he took the time to read the literature the doc gave me on lupus. So hopefully that will give him kind of a blueprint of what Im going through. I feel like an old lady, how am I going to feel when Im 60 if I feel like this at 30?

 
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Old 07-03-2013, 01:24 AM   #6
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Re: Lupus?

I hope, instead, you'll soon start feeling 30 at 30! The things that stand out most to me on your last post are---

Bladder issues, then discovery of fibroids. I believe those can cause urinary symptoms, as can ovarian cysts. I have both currently (bah!). I had one transvaginal sonogram that found neither were of the size or type requiring surgery right now, but I'll have a repeat transvaginal sonogram 6 months out. My GYN is following thru on both. What's your follow-thru plan?

Pain starting at 17. Did you see the "Alterative Criteria", esp. the one about "growing pains"? My doctor says lupus loves hormonal shifts, like the teen years, perimenopause, etc. My pain started at 13. Pain that early in life has to mean something!

A rash "counts" only if it's been determined to be *lupus-specific*. The lupus-specific rashes are described in a sticky.

Re possible stroke. In your latest blood labs, I hope you'll see (when you get your copy) a test for ANTIPHOSPHOLIPID SYNDROME, aka APS or Hughes's Syndrome. It's a blood clotting disorder seen standalone but can also occur in conjunction with lupus. There's a sticky on it.

Re what you told current doctor & what she asked. A proper assessment includes the doctor taking a *lifetime medical history*. That's because subtle signs & symptoms in people who develop lupus often appear years earlier. (The Alternative Criteria illustrate this.) In my many years of doctoring, only ONE doctor demanded my lifetime history, in my own words, and that I fax it before my first appt. He was the rheumatalogist who diagnosed me, laughably in less than one month, after all my years of futility. THAT'S how a doctor who REALLY knows lupus operates---which is why, IF you strike out, that you should seek a good rheumatologist---maybe at a teaching hospital, if possible.

On the plus side, you're gaining a lot of knowledge & your husband is, too. All you two can do is keep at it, which I know you'll do. Looking forward to your updates, hugs, Vee

 
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Old 07-04-2013, 05:58 AM   #7
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Re: Lupus?

So after a 25,000 dollar stay in the hospital where they reassureed me they had tested me for EVERYTHING (including Lupus) I get my records and there is no ANA test at all! They did check my urine and there was blood present even then and yet they released me with a good bill of health. Im so upset right now, with all the symptoms of pain I had why would they not test me for EVERYTHING like they said they did. Now that I think of it I didnt even seen a RF, this is ridiculous and they are our teaching hospital in the area. I think Im driving myself crazy because I dont really know what's going on and that scares me. This has been the longest week of my life. I know something is wrong but I dont know what. I had to wash my daughter's hair last night and I had to fight off the tears because I was hurting so bad. I woke up this morning with swollen fingers and now I have yet another crazy symptom, black stool. Im so scared I dont know what to do but Im always the strong one who can handle anything so Im trying not to let it show how scared I really am. I want to thank you Veej for being here for me to talk to. My best friend who has Lupus is going through a really bad flare and I dont really want to bother her with all of my issues and questions. So having you to talk to durin this time has been a great help.

 
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Old 07-04-2013, 06:26 AM   #8
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Re: Lupus?

Good morning. I'm sorry that you're in this much pain, that's awful.

Re: black stool, I think you should follow up immediately. From the little I know as a patient, it could be related to your anemia (which can be caused by internal bleeding), to GI problems like ulcerative colitis (etc.), or to things I don't even know about.... If you're pale, weak, faint, woozy?---please head to the ER rather than take any chances!

Re: AI tests your hospital didn't provide copies of = ANA, RF, etc. Sometimes tests like that are sent to outside facilities because they're titer tests that hospital staff can't perform---as opposed to basic stuff like CBC, metabolic panel, etc. that are literally done by machines. So maybe when you asked for "all" to be sent, some staffer sent only the mechanically-done ones but missed the other reports. I'd ask again, listing the labs you didn't get.

(This happened to me when I asked for ALL hospital reports to be sent to a specialist in a different hospital system. The Records dept. forwarded ONLY stuff like blood labs, not the abdominal CT (etc.) my specialist REALLY wanted. It took me days to track down why. Their excuse was, "You must call a different department for those." That made me mad, big-time.)

When you can, please let us know you're OK, Vee (concerned)

 
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Old 07-04-2013, 08:14 PM   #9
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Re: Lupus?

Thanks Veej I will definitely make sure I tell my doc about the stool tomorrow. I noticed my RBC was marked @ low levels & my B12 as well. I will make sure I go & ask for those other tests results tomorrow. I'm so anxious I really ain't wind dwn even though I'm tired. I really am trying to prepare for what ever news I may hear. I'm not sure what tests were ordered all I know is there was only one vial of blood taken this last time. What tests are follow up test to determine if lupus can be diagnosed? I just want to be sure that I'm being tested thoroughly because this is really a local clinic that I'm going through so idk just how thorough they will be. I'm trying to learn as much as I can because I feel that Lupus may be the reason I'm having all this pain.

 
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Old 07-05-2013, 12:20 AM   #10
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Re: Lupus?

Lilshort, go to the link cited in the sticky post "Answers to Lupus Test Results Questions". Once there, go to Patients & Visitors, then to Conditions, then locate the lupus section. There's a lot of info on tests, etc.

Re: tarry stool you just noticed, I don't know in what direction your doctors will go first. I'm guessing first order of the day might be to assess for internal bleeding, from, say, ulcer, various GI conditions, etc. PLEASE MAKE A LOT OF NOISE ABOUT THIS NEW SYMPTOM.

Re: what was & wasn't found during your hospital stay. An awful thing about autoimmunes is their nasty, uncooperative way of flaring and receding. Imagine your immune system chunking away normally, putting out "good" antibodies against viruses, bacteria, infections. Then all of a sudden it puts out a wave of (bad) AUTO-antibodies (mis)targeted against your own cells. In AI's, these "bad waves" come & go, is my point; thus trapping them by timely tests & timely reporting of symptoms is a challenge to doctors and patients.

The above sort of explains why you may not know yet, or even ever, whether the hospital really missed something, or whether you're just displaying new symptoms post-release. So, when you call the hospital, I'd stay polite & neutral, avoid blame but convey urgency. That could help you get the labs you need more quickly. (Once you have them, then you can sort them out.)

Hopefully a rheumatologist will get involved, but there are other disorders & thus other "ologists" that might be feasible, too. For example, GI conditions like Ulcerative Colitis or Crohn's can cause elevated ANA, joint pain, fatigue, tarry stool, and skin rashes. Anemia (your low RBC) can occur due to internal bleeding, from something causing early destruction of RBC's, etc. So don't be alarmed if you're sent in directions and "ologists" you didn't foresee a few days ago. Remember that TV show where the doctor kept barking at his interns, "Follow the symptoms!"? That's exactly what you want done.

I'm glad you posted back. You're absolutely doing the right thing by following up swiftly. And I'm glad you found us, too. We're always here & we'll watch for your updates. Sending you more hugs, Vee

 
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Old 07-06-2013, 05:35 AM   #11
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Re: Lupus?

Ok So after all that freakin out I was doing I get to my doc appt only to find out the doctor called out!!! So I told the head NP that I was only there to get my test results and my depo. So she agreed to do that, she grabbed my chart only to find out my results werent in yet!!! So she sat me down and just talked to me, I told her my symptoms and she told me that it's either Lupus or something called sclederma (sp?). So while I was there they did MORE blood work which was some test to see if I had bacteria in my stomach that was causing all my stomach pains. And she also tested my urine and the blood is increasing, there was no protein this time, but the blood was +3. The last time (which was a month ago) it was +2, and the two times before that it was +2, and +1. She said it might be kidney stones but I told her that Id had a cat scan in the ER to rule out kidney stones and when I said that she immediately she was going to refer me to a urologist. I have an appt set up for Thurs to get my results, they should be in my then. Im upset because it's taking so long and also because I just started this job and I dont want to have to be missing time from work this soon. But while I was there I got my labs and lookin over them I see my ANA was the Homogenous pattern (sp?) which Ive read is most commonly found in healthy ppl and not primarily in Lupus. I dont know how true this is but that's what Ive read, but my question still remains if it's NOT Lupus then what is it? But I do feel confident that I will be able to get to the bottom of it but Im really frustrated. Im just tired of being in pain

 
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Old 07-06-2013, 07:00 AM   #12
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Re: Lupus?

Lilshort, this nurse is clearly be trying to be helpful. But honestly, she's not equipped to be semi-diagnosing lupus, scleroderma, or any rheumatological condition. For starters, ANA alone doesn't diagnose a darn thing. Lupus, scleroderma, and the other conditions in the same ballpark have pretty lengthy additional diagnostic criteria, so there's a lot of stuff that hasn't been considered yet.

ANA patterns don't diagnose anything either, they only offer very broad clues, then those standard diagnostic criteria must be applied. And patterns aren't necessarily accurate, really, because they're assigned by a lab tech who does the best she/he can after visually inspecting a sample under the microscope. This process is as much an "art" as a "science".

In your shoes, I'd grab at the urology appt. that was offered. And if I felt really punk before then, or experiened new symptoms, or if the pain is too great, I'd head to the ER.

I've had stones multiple times. I was told that small ones don't necessarily show on CT. But all that is for a urologist (and other doctors) to work thru, as I'm not exactly equipped to diagnose anything either. (Scary thought. ) I like your positive attitude & determination! I too believe you'll work thru this. Hang tough & keep us posted, OK? Sending hugs, Vee

 
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Old 07-07-2013, 04:58 PM   #13
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Re: Lupus?

Hi Veej, I got a new weird symptom to report. So my friend and I went to the beach yesterday we were there for a few hours. First of all I didnt have any sunscreen which I know is a big no no. Any who my skin felt like it was on fire but there was a nice breeze so it wasnt too bad after a while. By the time I got hm (its about a 30 min ride there) I had a horrible headache like along the back of my head radiating to the front. Then about 20 mins after the headache started I got really nausous to the point that I had to lay down. I didnt even eat dinner because the room was spinning to much for me to get off the sofa. Then this morning when I woke I felt a little better, I went on to church and found myself having to grab the chair in front of me when I bowed my head and closed my eyes for prayer. It's like I couldnt keep my balance. I dont know what is going on and once again Im playing the waiting game. At this point Im lost on even what to research.

 
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Old 07-07-2013, 06:08 PM   #14
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Re: Lupus?

After being in sun all my life---not sun-bathing to get a tan, but playing tennis, swimming, gardening, etc.---I hit that point, too, where I got the big headaches & felt dizzy, weak, nauseous, shivery, and addled. So I think this may be a sign that your immune system is in some sort of transition. So we'll watch for your updates this week. Good luck!

 
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Old 07-11-2013, 02:25 PM   #15
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Re: Lupus?

So the doc said its lupus even tho I haven't had anymore specific blood work. Based off my pain & my original blood work that's what she told me. She gave me a rx for prednisone & sent me out the door. I'm numb right now & I feel like there's much more to it but hearing it come from a docs mouth is like being hit with a ton of bricks. There's more to the story but I'm too overwhelmed to type it all now just wanted to update you. Ill be back on later after I wrap my head around it all.

 
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