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lainie

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 #1 
Hi guys.
I have lurked here a lot, read a lot, asked questions and you were all so helpful.  I just had some new labwork done and wish to post my results.....

First I wish to tell you about my first experience with this Rheumy in town... only one I can go to btw.. ugh.  Anyway, around a yr ago I finally got in to see him.  It's not easy to in this town apparently.  I brought my husband with me (thank god) for support.  Anyway the Dr. was not pleasent to deal with at all.  He just walked in, and stated that I had no autoimmune problems (without testing me yet) and that all my problems were due to being old (I'm 52, do NOT consider myself old, I'm more like 8 sometimes lol... no but seriously the way he said it was really offensive) and that I take too much pain medication and those two things were causing all of my problems.

My husband and I were shocked in the least.  I couldn't even remember to tell him all of my joint pain actually started years ago, in my early 30's, 20's if you want to count my Cervical Stenosis and that I had a sleep study report that ruled out my pain meds as the cause.  He told me to go off all my pain meds immediatly because they were harming me.  SMH... I go to a pain specialist for a reason, just like I would go to him for his specialty's.... anyway after this short talk he still handed me a piece of paper for labwork, but said he was so convinced that I didn't have any issue's that I could have all my results sent back to another doctor then he.  Basically he didn't believe me, and brushed me off.  He never ONCE examined me, and I was even in a wrist brace because of all the pain I was having in my right wrist and thumb.

Ok, well I left and said no way, I'm gonna see if someone else can help me.  Well it was very slow going, had to also deal with my son's health issue's that popped up, so I put myself aside for a bit.

Ok.... so finally I have gotten worse, since I have to see my pain doc every month and he was the only one trying to help me get a correct dx I thought wait.... how bought if I can find his lab order I can have them fax the info to you.... He said sure, do it.  Well I couldn't find it (ugh, I am so blah, with brain fog, memory issue's, and I lose stuff all the time etc...) So I finally went back and asked for a copy of it.  They ended up giving me my whole file.  He was not too kind with what he wrote in my report and I guess even sent it to my PCP who never told me about what he wrote.  AND HE LIED!  He said he examined me and nope... he never touched me, checked my joints or any of the stuff he wrote in the report.

Ok... so to get to my final point, I saw my pain doctor today and WOW, I am doing the happy dance, but still kinda shocked at the same time.  My Doc was like really serious over some of my results which I wish to post here and maybe you guys can help explain some things to me before I go see him.  I want to be prepared if I get a *I can't or won't help you response again....  So here are my test results.

I'm gonna post all the ones, but some may be minor I get it but I can't distinquish which ones are or are not so I'll just post them...

MCV - High - 101
MCH - High -  33.6
EOS (Absolute) - High - 0.6
It said I had a trace of protein in my urine, but it doesn't look or seem to be important at this time.  It just said Negative/trace.  I had another set of labwork done for my regular PCP and it was the same in their set of tests.  Those tests were just standard...

Hemoglobin A1c it says pre-diabetic, but the other day I was told the same thing by my PCP and they said It was so minor that I prob just had one cookie too much that day or something...

TSH - High - 4.750.  *Note, I am already on a small amount of Levothyroxine, so I am guessing I will have to up it soon....

My Rheumatoid Arthritis factor was at a normal level.  Not convinced that I don't have it tho.  Right now I have a knee being looked at by a Surgeon and we are trying physical therapy first to see if I can get it stronger so I don't have to have surgery.  But to be honest I do not have high hopes about it.  I feel good after I leave but at home and between sessions I am still experiencing a lot of pain and I have found to have a Cyst behind each knee.  One knee is worse tho as 30 something years ago I dislocated it twice and it showed meniscus tears and problems with my tendons and ligaments etc.  But from what I've been told... when you have a cyst behind your knees, it's being caused by something, and that somthing is Arthritis.  Just not sure what kind so far.

Ok so on we go....
Vitamen D, 25 - Hydroxy level is low - 21.9.  (It's been low before so I'm not surprised)  I also know I have osteoporosis in my hips with a recent lower lumbar MRI recently done.  I have Arthris in my hip facet pockets (I think that's what they called it, but I don't have the report right in front of me) and something else, like a disck is sliding downward out of place or something like that.  Anyway, this explains all the knew hip pain I have been getting....

ANA, Antinuclear Antibodies, IFA - Positive Abnormal 1:80.  From reading it sounds like it's a borderline number.

Complement C3, Serum - High - 175

C-Reactive Protein, Quant - High - 8.7

So.... although I do not have an official dx yet, and not expecting one so fast when I see this Rheumy next month, but I want to be prepared.  I have pics of rashes, a Pic of one of my hands that swelled up one morning for no reason.  Like a club swelling, and my fingers were stiff.  Just stuff like that if he needs to see it.  I started seeing a new Dermatologist and was going to get my face rash biopsied but the guy just said to go back to the Rheumy because that's what they would do anyway, is send me back to him, so scratch that.  I was too tired to fight over it with him, I was also trying to get my son some help too, so we both share the same Doc Appts.

Ok.... so I'm almost there getting some answers.  Wish me luck.  I'm so tired of nodding off and sleeping all the time and all my joints hurting etc.... And then there's the stress over my youngest one whose going thru episodes with really foamy urine... long story.  You know whats funny?  Or kinda weird?  Is my oldest son whose 21 gets that classic, PERFECT looking Malar Rash when he gets too hot, goes outside or it gets really red and bright when he gets out of the shower.  I asked him some questions and he says no he has no problems and feels fine.  Unlike my other son who has a lot of gut issue's ie Gastritis and IBS, and joint pain.. A pediatric Rheumy said he had something like a Mixed Connective Tissue Disorder because he is hyper mobile etc.  But she just put down Arthralgia as a dx.  Hope I spelled that one right.  Ok.....

Well book over with.  Didn't realize I was going to type so much but my head is soooo confused.  Anything you can tell me, advise me, or help I would appreciate so much.

Thank you in advance :)
Cakelady

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 #2 
I am not sure you are going to like what I have to say. First off there are between 60-80 different AI's that mimic lupus. Lupus is very hard to dx. It can take years to get a lupus dx.

Also not all rhemys have lupus patients nor do they know how to treat them. Make sure your rhemy has lupus patients and the patients are being treated. Also having a positive ANA does not mean you have lupus. My ANA goes from positive to negative to positive plus there are people out there that have positive ANA's that do not have lupus.

Lupus is not something you want. I get you want answers but try not to push for a lupus dx. There are so many AI's out there that mimic lupus it could be any number of things.

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Cakelady

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 #3 
One last thing a trace of protein in your urine isn't really a big deal. What would worry me is A1C now that is nothing to mess around with
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taffylinden

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 #4 
Hi, lainie. Just to add to what Cake said...It can be very frustrating to have symptoms and not know what's wrong, and a rude doctor doesn't help matters. I hope your doctor can give you a diagnosis based on the test results. As Cakelady said, it often takes years to establish a lupus diagnosis, and that is one diagnosis you do NOT want to have. Also, because it's so frustrating to have no idea what's going on, you can start seeing lupus in symptoms that are completely unrelated to lupus. 

For instance, I don't know what's going on with your son, but lots of different diseases and conditions can cause a malar rash, and it may signify nothing at all. I sure hope that's the case for your son. But I'm afraid you'll need to be patient for awhile before you get a diagnosis.

Hang in there!


lainie

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Posts: 53
 #5 
Oh I don't mean to imply that I'm happy to get a specific dx, especially Lupus, I'm just relieved that I am feeling like I am on the road to finding out what the heck is going on with my body kwim?  No, I understand about how many different AI's there are, but for once I can start feeling like I am not crazy, you know?  I have been miserable for years, with Doctors testing me for Seizure's, Strokes, you name it, but then I found, wow, there is a group of symptoms that I understand, and understand how other people feel.  I think the most horrible thing has been how I've been treated by a few Doctors along the way... asking me if I was still seeing my psychiatrist for example because all my symptoms were due to stress.  I mean come on guys, you all know that stress hasn't caused what you have, but when someone just casually throws that out there, it makes you feel small and insignificant and I'm so darn tired of that.  All I want to do is to get to the bottom of what's happening to me, why I'll lay down and sleep for 16 hours at a time sometimes, Etc and for some test scores to show It's at least the start of something, no matter what it turns out to be.  As for my son, I'm not trying to say he's got anything (either one, including the one that has his own issues) but I did find it odd.  He's got no other symptoms so I'm just glad he's doing good health wise.  I just thought it odd when I looked at him one day and was like wow.... That looks like a classic rash.  And it stayed for months, and then went away.  Just seems to come and go.

Anyway, no matter what the final dx will be I still feel happy that something is now showing.  And I have at least one Doctor who backs me up.  I'm always in pain, even on pain meds.  Although I have started a hand cream my pain doctor prescribed that has helped A lot!
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