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Old 03-08-2010, 05:00 PM   #1
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Can someone help me figure it out?

Can someone tell me....what should your lab test/bloodwork results read in order to diagnose mixed connective tissue disease?

Is the sed rate high or low? what is considered high? what is considered low? what does high/low mean? in other words does high/low mean lupus?sclero?rheumatoid??

Is the crp high or low? same questions as above

the rnp...if its low does that mean for sure you have rheumatoid or could there be some other explanation for all the above numbers to be off....say a simple but unexplainable infection...or mono...or something.

I'm trying to understand how, without family history of any of these diseases, how with only one small joint slightly hurting that I now have mixed connective tissue disease....i don't see a connection...at all.

My sed is 2 and has been for years.
My crp is .10
my rnp is 2.1

I'm confused. The rest of my blood work is perfect...cholesterol, red blood, white blood, platelets, everything....nothing is off.

Last edited by lolo3132; 03-08-2010 at 05:02 PM. Reason: additional info.

 
Old 03-08-2010, 11:07 PM   #2
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Re: Can someone help me figure it out?

Lola, I don't think I will be much help but I hate the thought that no one is answering you yet. I have has all of those tests. In order to know if you are high or low, you need to post the reference ranges. Each lab has their own reference ranges AND it is also helpful to have the unit of measurement as that can make a HUGE difference as well. I cannot tell if you are high or low without the specific ranges. I can give you an example with my tests. I have had these tests a few times and you will NOTICE the different units of measurement.

sed rate?
ESR westergren 8mm/hr (0-20)
Sed Rate West 6mm/hr (0-30)
Sed Rate Westergren 10mm/hr (0-30)

C Reative Protein 0.1mg/dL (0-0.8)
C Reactive Protein Quant 2.1mg/L (0.0-4.9)

Anti ENA RNP 7 AU/ml (0-99)
neg <100
equivocal 100-120
positive >120

You will notice that my sed rate is higher (normally would not be good to be high), crp is the same and/or higher (also not good to be high) and anti ena rnp is higher (but with this reference range still negative). The RNP is a test for MCTD. Do you know your reference ranges? Can you get them? It might be a good idea to repeat the test if it doesnt make sense......that would be a second step (after getting the reference ranges). Then ask your doctor why he/she is suggesting MCTD.

 
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Old 03-09-2010, 06:36 AM   #3
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Re: Can someone help me figure it out?

Thanks for responding....I really appreciate it. I am just so darned confused right now. Its one thing to have testing and have a doctor say this is what it is...but then its something else when you take that info and start reading things and what the doc says makes no sense whatsoever.

I should give a little pre-info...for YEARS I have had issues with: exhaustive fatigue, ringing in my ears, insomnia and brain fog. (I'm 45, female, two boys that are pretty much grown now, don't work, been in two pretty car accidents and sustained a closed head injury in both cases which can possibly explain the brain issue...but the other issues NO ONE can explain). I've been told I had CFS, Fibromyalgia, am crazy/psychotic, Lyme disease, and adrenal dysfunction.

Recently, within the last two years, I have an issue with my throat. It gets tight, I feel the need to clear it but there's never anything to clear, the glands on either side swell and have a very sharp pinpoint pain in them, and I get hoarse. This, as well as the other issues, seem to come and go. I began to think maybe it was hormonal...either female or thyroid or both.

My thyroid always checks out fine...smack dab in the middle of the "normal" range. The only findings in the bloodwork that I have found odd were that my white blood count always seems to be on the low end, but not so low as to cause concernd, and my albumin/globulin comes back off...sometimes high sometimes low.

Also in the last three years I have had what looks like receding gums. Considering I floss, brush, never had a cavity, never wore braces, and attend my dental appointments, and my dentist always says I have the cleanest teeth, I can't figure this one out. I've been to a periodontist who sat there and actually said "I don't know why they are receding", and I went to another one who said "Looks like the blood supply is cut off to your mouth." In all honesty...ARE YOU SERIOUS???...if the blood supply was cut off to my mouth wouldn't it turn black or something? wouldn't teeth fall out? I mean seriously...

Oddly enough, around January/February, I get to feeling pretty darn bad enough that I give in and get bloodwork done. So, I've had all the numbers checked INCLUDING the ANA and CRP and the sed rate....everything everytime comes back normal...

This new issue, ONE joint in my right ring finger the top joint, was painful and swollen in the morning for about 4 weeks when I went in to ask about it...which is what set off the bloodwork

Having said all that, here are the numbers and ranges:

SED RATE (range <or = 20) mine is 2 and has been the last three years
CRP (on one report the range is 0.0-4.9mb/L) my number was <.03 in 2009
(the other report range was <.80mg/dl) my number was <.10 2010
ANA (range is 0-99, AU/ml) mine was 8 AU/ml in 2009
the test this time was called a ANACHOICE SPECIFIC AB CASCADING REFLEX ANACHOICE SCREEN, no ranges just positive or negative and mine was positive.
RNP antibody (range <1.0 neg AI) mine was 2.1 POS

From what I have been reading, maybe my understanding is wrong, but, the SED and the CRP should both be rising and much much higher in order for there to be any indication of any type of MCTD.

So...my questions are what is considered high? what range is considered high enough to give such a diagnosis?

Wouldn't I also need some other symptoms?? I don't have a rash (never have), no fever, no weightloss, no swelling anywhere, no headaches...none of the symptoms I have seen listed for them to give me a definite diagnosis of anything....especially Lupus or scleroderma or rheumatoid arthritis. The doctor wouldn't stop questioning me about Lupus. I don't have Lupus.

There are NO major diseases in my family...no cancer, high blood pressure, diabetes, arthritis of any type, no seizures, no brain cancers, not one thing. So please explain how out of nowhere and with only the tiniest of joints hurting I now have LUPUS??

The reason the rheumatologist suggested MCTD is because that is what it says on the bloodwork itself. "RNP antibody is found in patients with mixed connective tissue disease in high titer. This antibody may also be seen in systemic lupus erythematosus and other connective tissue diseases. A positive result at this stage of testing stops further testing and does not preclude additional positive antibodies."

Except for the RNP, can any of the other numbers be changed by say an infection like mono, or strep, or some other bacteria/virus??

Sorry if I sound a bit uptight...the more I think about it all the more irritated I get.

Last edited by lolo3132; 03-09-2010 at 06:42 AM. Reason: additional info.

 
Old 03-09-2010, 07:21 PM   #4
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Re: Can someone help me figure it out?

...if this is true....if I have this...what about my children?

 
Old 03-09-2010, 08:38 PM   #5
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Re: Can someone help me figure it out?

Lolo, There are some good books that you should read. You can buy them or borrow them from a local library. If you are feeling great, then that is a positive sign. There are a lot of people with autoimmune diseases that live long fulfilling lives and no one knows that they have issues. I am not an expert on MCTD. I only know what I have read. I am still seeking a diagnosis for bilateral arthritis in multiple joints (shoulders, elbows, wrists, hips, knees, ankles, MTP joints) and have been reading everything I can get my hands on. I also have Hashimotos (hypothyroid) so have one autoimmune disease that has been confirmed.

I might suggest that you visit the Lupus board. I know you say that you don't have Lupus BUT there are many people on that board that are very knowledgeable with regard to auto immune diseases and, if I remember correctly, even some have posted about MCTD.

Quote:
Recently, within the last two years, I have an issue with my throat. It gets tight, I feel the need to clear it but there's never anything to clear, the glands on either side swell and have a very sharp pinpoint pain in them, and I get hoarse. This, as well as the other issues, seem to come and go. I began to think maybe it was hormonal...either female or thyroid or both.
Have you had your thyroid levels tested? Some doctors only test TSH. You also want to get FT4, FT3, TPO and TG antibodies tested.

Quote:
Also in the last three years I have had what looks like receding gums. Considering I floss, brush, never had a cavity, never wore braces, and attend my dental appointments, and my dentist always says I have the cleanest teeth, I can't figure this one out. I've been to a periodontist who sat there and actually said "I don't know why they are receding", and I went to another one who said "Looks like the blood supply is cut off to your mouth." In all honesty...ARE YOU SERIOUS???...if the blood supply was cut off to my mouth wouldn't it turn black or something? wouldn't teeth fall out? I mean seriously...
This is very interesting. I also have gum issues but also serious bone loss in my jaw. I see a periodontist every three months and have so far held onto my teeth. Teeth are fine but gums are a big issue. Have you been tested for Sjogren's Syndrome? I have dry eyes and use Restasis and sometimes wonder if the dry eyes and gum issues are related.

I also wanted to add that about the ANA. Sometimes ANA can be negative but you can still have an autoimmune disease.

Quote:
ANA (range is 0-99, AU/ml) mine was 8 AU/ml in 2009
the test this time was called a ANACHOICE SPECIFIC AB CASCADING REFLEX ANACHOICE SCREEN, no ranges just positive or negative and mine was positive.
As a comparison, my ANA was 14 AU/ml one time and 30 AU/ml another time with reference range the same as yours 0-99. After reading your results, I will be asking for the "ANACHOICE SPECIFIC AB CASCADING REFLEX ANACHOICE SCREEN". There has to be an answer somewhere.

Most importantly, don't panic. Read all you can. Have the test repeated. And then, address the symptoms as they appear. If you do in fact have this, then look at the positive and see that you are lucky enough to have gotten a diagnosis and now you can get on with treating it and get on with your life!! Some of us are still searching desperately for an answer. Try not to dwell on the negative. Sometimes that is easier said than done. I know that firsthand!! Good luck to you. (Go to the Lupus board and see if VeeJ can help). I am truly sorry that I don't seem to be able to offer any first hand advice.

Last edited by hopalong_too; 03-09-2010 at 08:56 PM. Reason: More Info

 
Old 03-10-2010, 04:50 AM   #6
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Re: Can someone help me figure it out?

You have been helpful...thank you!

The thyroid testing....every time I"ve asked about it I only get TSH done. I'm thinking about getting more specific about all this as far as testing. I'm not willing to just roll over and accept what they hand me. I STILL think it has something to do with the thyroid. When I answer questions about Lupus and RA my percentages are so low I just can't see a connection. When I answer questions about hypothyrodi, EVERYTHING seems to point to this.

I'm just trying to decide what is the best plan of action. My problem is if you go to a rheumatologist then they only test for that and don't look at anything else....if you go to an endo they only test for that. I'm considering a hematologist to see if starting at square one and going from there would be more efficient.

Thanks for your help.

(I did post another message but no one responded to it...I think I actually posted it either specifically on MCTD or Lupus...can't remember...but no one has responded. I may try what you said and see if that person can help.)

 
Old 04-09-2010, 02:31 PM   #7
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Re: Can someone help me figure it out?

What wonderful, caring responses to your post. Isn't is great to have this message board? I just joined recently and am so heartened with what I see. I was diagnosed with RA 6 years ago and quite frankly, have been so ill that I don't even have the energy anymore to know what any of my blood test levels are. All I know is that when I finally got a ra doc with enough expertise and compassion to make the diagnosis I was SO relieved. It's amazing to think that it's a relief to finally know something really IS wrong with you! I felt guilty because I felt I shouldn't feel that relief. But - when you know something is very wrong and you keep getting doctors who say they can't find anything it begins to test your sanity. I had terrible self doubt. Anyway - to finally get the diagnosis was a relief. I have ra and fibro & lupis but all with very borderline lab numbers. The doctor finally looked at the entire picture and came up with a plan first to address the symptoms to help me get some relief and some rest and then to address the long term results. After all these years, it's a daily struggle of constantly trying to redefine what "normal" is.
I know I haven't addressed any of your points, but at first you weren't getting any and how I wished I could help you. But now you've gotten some great direction. Hang in there and just take it one step at a time. Be your own best friend and your own advocate and don't let anyone make you feel stupid or like you're a pain in the you know what.
You sound like you're really gaining a lot of knowledge and in the long run it will make you the number one contributor to your own health.
Thank you SO much..... each and every one of you great people!

 
Old 04-09-2010, 09:03 PM   #8
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Re: Can someone help me figure it out?

Hello,

I have Hashimoto's and Celiac. I also have H Pylori. I have what is called Chilblains of my toes which is usually connected to Connective disease.

My labs are pretty normal but have to see an Immunologist or Rheumatologist.

I am on Armour 4 Grains daily , antibiotics for H Pylori and stay on a gluten and dairy free diet.

I also have skin cance but am doing well and cancer free one year now.

Try and keep a positive mind. Oleander

 
Old 04-14-2010, 04:00 PM   #9
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Re: Can someone help me figure it out?

Hi,
I am in the Uk and battlled for 3 years to get a diagnosis. Lupus(SLE )usually needs a trigger, mine was a hysterectomy, it can be trauma, accidents , hormonal etc. It is soooo difficult to diagnose as we are all different.
I started with fatigue so bad that I couldn't work as a nurse, I was on long term sick, muscle and joint pains, basically everything hurt. I started with hypothyroidism, quickly developed, high cholesterol, high blood pressure, slowly got worse. My ANA has always been negative I fall into the small group of sero negative lupus patients. My ESR was high and my CRP was raised.
In UK there is a lupus world expert called Professor Hughes, he discovered the sticky blood syndrome names Hughes Syndrome (APS) he has retired from NHS but has a private clinic in London. He diagnosed me and I now go to St Thomas Hospital in London for follow up. I was first diagnosed with Fibromyalgia because my bloods weren't positive. Be persistant its the only way you get sorted with these illnesses.Try to see a Rheumatologist who speciallised in auto immune diseases.

 
Old 04-15-2010, 05:11 AM   #10
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Re: Can someone help me figure it out?

Since mid-March I've been feeling really great. So, let me ask...in Lupus, would it be the norm to have symptoms then go months and months without any problems? I'm still not convinced that its Lupus. I had a 2nd opinion appointment (with an idiot) and a new blood test was done and all the numbers came back negative. I never got an explanation of my bloodwork from the second doc (hence my calling him an idiot...plus he was extremely rude!) even though I left messages 4 days in a row. I just finally gave up. I'm assuming that I don't have Lupus...until someone can give me a definite answer. I will be going to our teaching hospital in June unless i can get in earlier.

...I still think it is all hormonal regardless that those tests also come back "normal"....

 
Old 04-15-2010, 03:05 PM   #11
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Re: Can someone help me figure it out?

My experience is that I seem to have one good day to every "bad" day. If I feel good for, say, 3 days in a row I know I'll be in bed for three days. I can go on adrenaline when necessary but it always equals out to this equation for some reason. So my experience is not that it can go away for months. But I know my RA doc tells me there are literally hundreds of different types of auto immune diseases and each patient is unique. It's just so depressing for me though. When I have those days when I can actually do normal things, I'm still surprised when I start to feel the pain and fatigue again. You'd think that after all these years I'd learn, but I guess I just can't get it into my head!
I also started with extreme fatigue and was diagnosed first with RA and had to stop working. The next was the fibromyalgia and then lupus was within the last year. It all gets mixed up together for me. I don't know where one begins and another ends.
I take methotrexate and Enbrel injections, plaquenil, and I just started Savella. We increased the dose from 50mgs to 100, but the sweating and nausea were too much on the bigger dose so I'm back to 50mg a day.
I was on very large doses of prednisone for many years but now I can go for months without it. I just start it when I have a severe flareup.
The hardest thing for me was to find a good rheumatologist. I saw two before I found one I felt comfortable with and who would really work with me.
My daughter was diagnosed with "connective tissure disorder" a few years ago. She takes plaquenil and seems to do fine with just that. I'm relieved that hers was diagnosed early. I know I was sick for a long time before we found out what it was. She benefitted from my experience and was able to see my doctor.

 
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