After 10 months of waiting I got into the rheumatologist! She did a complete exam and has ordered an MRI, Bone scan, xrays and 24 blood tests. Most of the blood tests are screening tests for various auto-immune diseases (most of which I’ve never had before). I feel like I might finally get some answers which hopefully will lead to getting my joints under control! I’m so relieved that she seems to really care about getting this figured out. =)
Hello Roni,
I am so pleased for you mate...sounds like you have to wait as long as we do here in the UK but those extensive tests cover aload...that's what was run on me first off 9 bloods, then a furthur 12 and then another 8-9 done besides other's while seeing the dermo.
So hopefully like you say something will show properly on what's happening...i'm so pleased for you.
All my love Terri xxx
Thanks! She kept asking me why I was never sent back to her and I didn’t want to be rude and say that it takes too long and everytime a had a flare my doctor didn’t want me to wait that long to get things under control. The blood tests are insane, but she wants to start from scratch. I don’t even know what half of them are! LOL
I go for the bone scan tomorrow and blood work on Monday, so I’m just waiting to hear from the folks in xray and MRI departments.
Here’s a list of the blood tests she ordered:
ESR
CRP
CBC
Diff
Ferritin
CK
LDH
HLA B27
ANA
ENA
C3
C4
ANCA
RF
Anti CPP
Vit B12
Ca
Mg
TSH
Urea
Crest
Lytes
Uric Acid
She’s being very thorough and really seems to want to get things under control for me. Of course after 10 months of waiting the only inflammation I had was in my SI joints and hips. I didn’t even have a finger joint inflamed (which I almost always have). I was thinking going in that I would get brushed off because I was having a good day and of course today my elbow is acting up!! Always seems to be the way. LOL
Roni
That is great news. I am Glad the visit went well and wishing you all the best in finding your answers!
The list of lab tests are all to familiar for me!
Deenie
Roni it's sick how they make we wait but at least she's taking it serious because like yourself i need something stronger...when it first happened in my elbow like you have it, i did'nt know i had Lupus i was treated for over a year with tennis elbow...idiot of a doctor.
Roni you've definitely add the full works mate here and thanks for adding them, as this will help members who need to check results besides.
Love Terri xxx
ESR (erythrocyte sedimentation rate)- Heamotology test for inflammation & to what rate your red blood cells fall in testing.
CRP (C reaction protein)- Inflammation & tissue injury plus it can tell also what's causing an issue to occur in inflammation.
CBC (complete blood count) on white and red blood cells and also platelets...to see what comes in as high or low counts.
Diff (blood differential test - WBC) Test white cell count to see if it's high or low.
Ferritin -Test the amount of ferritin in the blood which is iron which contains protein stored in cells in the body.
CK (creation kinase) measures the blood levels of certain muscle and brain enzyme proteins.
LDH - measures the amount of an enzyme in the blood called " lactate dehydrogenase
HLA B27 - determines the presence or absence of human leukocyte antigen
ANA(antinuclear antibody) screens for several autoimmune Diseases
ENA(extractable nuclear antigen) Tests for specific autoantibodies and is generally ordered to test for autoimmune disorders
C3(Complement Activity, Complement Component C3) are used to determine whether deficiencies or abnormalities in the complement system are causing, or contributing to, a patient's disease or condition.
C4 - are used to determine whether deficiencies or abnormalities in the complement system are causing, or contributing to, a patient's disease or condition
ANCA - Detects vasculitis
RF (rheumatoid factor) A blood test to detect Rheumatoid arthristis
Anti CPP (anti-cyclic citrullinated peptide antibody) A test to show the presence of markers for Rheumatoid Arthritis.
Vit B12 - It's a blood test to show high or low levels in red or white bloods cells if so it's a sign of anaemia.
Ca - Test for calcium levels in the body that's not stored in the bones.
Mg - check the amount of magnesium in your blood
TSH ( Thyroid-stimulating hormone) test is used to detect problems affecting the thyroid gland
Urea - test is to measure of the amount of nitrogen in the blood - to make sure your kidneys are working properly.
Crest ( Crest syndrome) checking for systemic scleroderma
Lytes - Testing levels of magnesium, sodium, phosphorus and calcium in the blood.
Uric Acid - Checking for Gout.
Awesome explanations Terri!! I had looked up several that I wasn’t sure of. Thank you so much for that, I’m sure others will find it helpful. My official dx is psoriatic arthritis (without psoriasis) and ITP (autoimmune low platelets).
I have a positive ANA & low platelets so with those ones I already know how they’ll turn out. I expect the HLA B27 will probably be positive (most people who have arthritis in their spine/sacroiliac are positive for that) and the inflammation tests will depend on the day! LOL
A lot of them I haven’t had before (I’m really curious to see how the ena panel comes out). She is basically starting from scratch with my diagnosis. Currently I have 3 lupus criteria (non-erosive arthritis, positive ANA and low platelets) and from the line of questioning, she seems to be thinking along those lines (it’s been 23 years since they started testing me for Lupus). She also was very interested in a sore I have on the roof of my mouth and how sick I became everytime I went south for a vacation. At this point, I don’t care how she decides to label it, as long as she finds something that will help get the painful joints and fatigue under control. I’ve always thought it was lupus due to having so many other symptoms that aren’t official criteria. I would love to have an answer (so i don’t feel like i’m going crazy!) but “relief” is much more important to me.
I feel like she’s going to figure it out, even if it takes her a while. =)
Also I think the DIFF test is not what you have listed. I think that one gives more information on the CBC test. Instead of just counting them, it measures size and shape (which helps determine the age of the cell and how your marrow is functioning).
This is where they get the MPV (mean platelet value) for me. The MVP tells them the average size of the platelets. Platelets are larger and not as “sticky” when they are new. My MPV number is always high, which means my marrow is overproducing new ones trying to replace what my immune system is destroying. People with autoimmune destruction of platelets always have low counts and a high MPV. I really couldn’t say if it’s the same for all the other cells though, this is the only one that was explained to me.
Hi Roni,
I did them when you said you did'nt know what all of them was, your welcome anytime but when you go back also check to see if you have sjogrens because that is an important Disease and if she says yes, you need to know at what degree Roni primary or secondary.
SK as that also psoriatic arthritis, now i have psoriasis but i have cervical spondylosis also known as osetoarthritis....now youe arthritis usually follows after psoriasis itself.
Well how you have a positive ANA mines been tested twice both come in high and the same with the ENA and my DNA was tested for inheritence and also for meds my system can take sulpha surposed to but that Dapsone drug made me ill...i'm more suited to anti-malerial.
This one HLA B27 it says what it means but was also showing a level of 25 and 15..so that comes in different levels.
Well if your ANA comes in again positive then your ENA will most likely match it....well as long as you know what you've got that makes you more at piece of mind with yourself but i hope you don't have scleroderma as i've got that, it affects your muscles and thickens your skin, in other words it's not pleasant to have and it also follows with raynauds.
Well how you've had all these bloods done something must show...because my bloods must have been strong at the time because as bloods was coming in they was throwing what i have at me.
I really do hope it works your way and do you phone for the results or have you got to wait long to see her again.
Love Terri xxx
Roni,
You can just hae a Diff tests which i've put down and there's also Diff with CBC test but i only refered to what you put.
Roni if your platelets are like that low...then get ready as there maybe more involved and more levels showing.
It's totally terrible what we go through...totally nightmare mate. xxx
Roni said:
Also I think the DIFF test is not what you have listed. I think that one gives more information on the CBC test. Instead of just counting them, it measures size and shape (which helps determine the age of the cell and how your marrow is functioning).
This is where they get the MPV (mean platelet value) for me. The MVP tells them the average size of the platelets. Platelets are larger and not as "sticky" when they are new. My MPV number is always high, which means my marrow is overproducing new ones trying to replace what my immune system is destroying. People with autoimmune destruction of platelets always have low counts and a high MPV. I really couldn't say if it's the same for all the other cells though, this is the only one that was explained to me.
Oh ok! I didn’r realize they were different if listed seperately, as she has them on my form. There’s so many I am likely confused! LOL
My ITP is fairly mild. I usually am over 100 (last one Aug 1st was 132 which is just below normal).
I thought I read that the ENA panel included the autoantibodies for sjogrens? From what I understood from what i read the ENA panel determines which autoantibodies showed up in the ANA? And I also think one of the other autoantibody tests she was running was for sclaroderma… But I could be wrong! LOL
It is highly unusual to have a psoriatic arthritis diagnosis for 15 years and not develop psoriasis, however I’ve been told it’s rare but not unheard of. I believe the dx was largely based on the fact that my youngest daughter had a rare form of psoriasis (pustular) which is extremely rare to see in children and pre-disposes her to develop psoriatic arthritis. Psoriasis runs in my family and my husbands so to me that explains why she got it so badly.
Some stuff doesn’t make sense for a Lupus dx though and that’s what leaves me baffled. Textbook lupus arthritis doesn’t happen in the spine/sacroiliac joints (although many people say they do have it there as well) and psoriatic arthritis is a spondylitis and I do have it in my back. However the rheumy mentioned that she wanted to find out if my back was inflammatory or osteo. So maybe it is osteo and everyone has just assumed it was inflammatory because of the PsA dx? The other thing is that I don’t really have much for rashes. I’ve had a couple of things that cleared on their own. And lupus stats say that everyone has a rash of some variety. So that makes me think maybe it’s not lupus (but I don’t have psoriasis either!). So very confusing!! So like I said I just want relief and figuring it out will be a bonus! LOL
Oh… she will call me when all the results are back and book me in for another appointment. Now that I’m officially “her patient” again I don’t have to wait. It’s only when you are first refered that you wait forever (her current patients take precedence over any new ones). She said there is a wait for the MRI but said I should have all the tests done within 3 months (I assume she meant the wait time for the MRI was within 3 months). Still a bit of a wait but at least we’re going somewhere! =)
Hi Roni,
All this you've stated is correct and by your results it says the same as you've stated.
I thought I read that the ENA panel included the autoantibodies for sjogrens? From what I understood from what i read the ENA panel determines which autoantibodies showed up in the ANA? And I also think one of the other autoantibody tests she was running was for sclaroderma... But I could be wrong! LOL
What i'm trying to say is...she may say yes you have sjogrens but there's a good many members on here now still having to find out what degree because of just being told they have it but that scleroderma contains such alot of issues Roni and read this link on it mate because there's such alot on that also and that's a Crest syndrome but crest syndrome does mainly cover Gout which people with Lupus can develope.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001465/
Oh Roni it sounds like your daughter as inherited the psoriasis..it's a shame when they're only young plus it's nightmare when it does break out.
Ronie your psoriatic arthritis becomes involved with spondylosis and spondylitis..you see if you carry any of the other two that's why she's testing you for both spondylosis and spondylitis give you back trouble i've got it...some days i feel like someones hit me with a bat across my back.
Ronie not everyone with Lupus as the trouble with skin issues and then there's lupus suffers who have skin issues and not SLE...if i was you i'd wait and see what those results bring in.
Well Roni lets hope they come through quickly and your called in at the same rate besides to finally know what's happening...there's always a wait for the MRI's unless it's really serious.
Well i am really pleased for you and throw her my way mate..as i'm sick and tied of waiting now like you and when i do get my appointment yes bloods etc the same as you but anything else is done..it's totally sick.
Love you loads Roni. xxx
Thanks Terri! I would send her your way if I could! Bone scan is done. They did a full body one then one for just my back, sacroiliac joints and hips, blood work on Monday, MRI on the 23rd (a Sunday which is weird!), now just waiting to hear from the Xray department. Apparently rheumatologists don’t have to wait for tests! =)
And the cardiologist also called (had a echo done to check on a heart murmur) so I go see him on the 19th. Very busy moth for medical stuff after months and months of waiting! Hopefully it all gets figured out. =)
Love ya! xoxo
Dear Roni,
I have Psoriatic Arthritis without the Psoriasis too, along with secondary Sjogrens and Raynaud's. They are still looking for others to show up.
If I can help you in any way, or if you need to talk, let me know. My type of PsA is Spondylitis, so I know all about the SI joints.
Are you taking an immunosuppressant yet to slow the progression?
Glad to hear your Rheumatologist is so thorough, hold on to that one!
Hi Roni,
I'm just so pleased all the testing is being done so quickly...so hopefully you should get your results quicker than you think especailly if your called in sooner if anything has been found.
Well an MRI here is weird besides other tests..i thought it was at first until i asked and weas told they still run tests over the weekend especially if they've been done as an emergency.
Well all i can say is come the 19th nothing is to serious with you and things are going alone fine but i am really pleased they've moved so quick on testing and your on about your month you want to see my mouth it just never ends.lol
Thinking of you dearly Terri xxx
SK - thank you! I am not taking anything but anti-inflammatories right now. This visit to the rheumy was to look at getting me started on a DMARD, but she wants to take another look at the dx since I haven’t seen her in so many years, never developed psoriasis and started having positive ANA tests. She also wants to determine if the sacroilliitis & spondylitis is inflammatory or degenerative (I assume to help with the dx). It’s been about 13 years (give or take a year) since she dx’ed psoriatic arthritis and I didn’t develop the problems with my back and SI joints until about 7 years ago. It was assumed by the rehab doctor I saw (and myself) that it was part of the PsA. It was at that time that my ANA started testing positive (weird co-incidence?). I’m glad that she took the time to really examine me and ask questions about everything I’ve experienced (related to the arthritis) since I last saw her.
Terri - the heart is a worry, although I’m sure it will be fine! Staying positive… Most heart murmurs are harmless. =)
I’m glad the tests are happening so fast too, although that also kind of worries me, since our system works by the most urgent cases getting in faster. But when I talked to the lady doing the bone scan, she said the rhemy’s tests get a higher status. The waiting for the results will be the hard part!
ALSO - is it normal to have a headache after a bonescan? I don’t recall if I had one before (too long ago for my foggy brain to recall! lol). It’s not too horrible, seems to have peaked and is calming down now.
My headaches are either neck related or sinus/allergy. I have not had a bone scan yet, surely that is to come, can't wait! Glad you are getting such good care and that your Rheumy is so good! They are hard to come by!
Although, at times during the 10 month wait, I doubted my decision to wait longer for her, I’m so happy I did in the end. I think the other rheumy (we only have two) would have just prescribed a dmard and sent me on my way. I’m glad she wants to clear up the confusion with my dx. I feel like whatever she comes back with will be correct due to the multiple tests.
Anne, I’m so happy that your leg is getting stronger! Just the added stability you must have on a daily basis is such a benefit. As we age we are more prone to falling and with our added isssues, the injuries from a fall can be devastating. I’m just so happy to hear your seeing an improvement. Just imagine where you’ll be in six months or a year from now!!
I’m down 93lbs now and still work on losing. I am out of the “obese” category and working on getting to the "healthy range. I haven’t been using the treadmill much because of my SI joints. I really need to get back at it though, even if I slow it down and just start doing more leisurely walks. Afterall… If you can push yourself with your weak leg, I can do it too!
xoxo