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Discussion Starter #1
I'm new here. I haven't been diagnosed with lupus yet so I would like some feedback about recent blood test results: CBC values normal except for Lymphocytes low, Granulocytes high, MCH high, MCHC low; ANA positive, titer >=1:320, speckled pattern; RNP Ab, SSA Ab, SSB Ab, Smith Ab and SCL70 Ab negative. Does this pattern look familiar to anyone?

Also, what does it mean when one's MCV is within the normal range but MCH is high and MCHC is low? I have had this combination for 20 years or more and absolutely no one has explained it to me nor has anyone informed me of anything I can do to move these values to within the normal range. Doesn't it represent some kind of anemia? If anyone can explain what this might be and what I can do about it, I would appreciate it immensely. All of my doctors avoid discussing it.

Barb G.
 

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Hi Barb,

Your doc will take all your test results into account and consider your symptoms/what meds you are currently taking and also want to rule out any other causes for the abnormal results.

Lymphocytes being low is quite a common finding in SLE, however there are many other possible causes:

http://www.rcpamanual.edu.au/sections/pathologytestindex.asp?s=33

Do you know which Granulocytes were high, was it basophils, neutrophils or eosonophils?

I assume the rest of your Red cell count was normal and the following are the only abnormalities?

Is your MCH very high or not much out of range? As you probably know it's a measure of how much haemoglobin is in each red blood cell. So a high level wouldn't be too much of a problem unless it was sky high.

Same goes for your MCHC is it very low or just out of range? It's a measure of the haemoglobin in a certain volume of red blood cells. Again unless it's very low it's probably of little consequence.

A lot of these red blood cells readings (like many tests) need to be read taking each of the different components into account to see if these are just individual variations from the norm and the overall picture is fine or if they indeed are indicative of problem.

There's a link to various sites explaining individual blood tests pinned at the top of the Tests and Procedures forum. It's helpful to educate yourself so you at least know what the doctors are testing and what their significance is.

The fact your ANA is 1:320 is enough for them to carry on assessing you over the long term as long as you are having symptoms of some kind of rheumatic disease.

Good luck,

love
Lily
 

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Discussion Starter #3
Thanks for the info Lily.

I don't know which granulocytes are high, the printout I received didn't specify (as far as I can tell).

And, yes, the rest of my Red cell count was normal. I provided info regarding the abnormalities only.

My MCH is not much out of range (high) and my MCHC is just out of range (low).

The problem is that I have had symptoms of anemia all of my adult life and there seems to be a problem that is hereditary because I seem to be developing all of the same conditions my father has experienced over his life plus some novel ones. My father has Vitamin B-12 and folic acid deficiencies and other relatives from his side of the family have been diagnosed with celiac sprue and a form of leukemia caused by genetic abnormalities acquired over time, all conditions involving anemia. My father is 74 years old and is nearly a vegetable from the ravages of multi-infarct dementia. The aunt who acquired leukemia passed away at 55 years of age.

I'm frustrated by the medical community's lack of interest in pulling all of the pieces of information together to arrive at a diagnosis so that I can learn how to manage whatever it is that I have and live a productive life. I haven't been able to do hardly anything (housework, walk far or much) since May 3, 2008 and I haven't been able to work much since January 2001 because of the level of pain and fatigue. MS has been ruled out per MRI. I feel like I'm disposable, like I'm not worth the time and effort it would take to sort everything out and find the correct diagnosis and treatment.

More information about my history and symptoms is posted under Introduce Yourself.

Barb
 

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((((((((((Barb)))))))))) yes it can be frustrating beyond belief. It sounds like you have quite a complicated medical and family history. I had a similar scenario and it wasn't until I got to my great doc that I have now that things got sorted out. I do hope the new Rheumy gives you thorough investigation and I have everything crossed for you. It can take time and observation but with the right doc you will sort all this out. Do stress to her just how this has affected your life and that you really need some answers and some kind of help so that you can have some semblance of a life. Docs need specifics sometimes, saying you are tired etc etc doesn't convey the level of fatigue you suffer. Same with all our symptoms, they need to now how it is affecting our ability to function as a human being.

I ended up being referred to an Immunologist who also dealt a lot with autoimmune diseases amongst other things. He did some real detective work but we got there. So that's another possibility for you if the Rheumy does not seem to know what is going on.

Good luck and don't worry we understand what this is like, so many of us have been where you are now. But don't give up there is hope and help out there.

love
Lily
 

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Discussion Starter #5
Hi Lily,

Thanks for your feedback. When I read that you had a similiar scenario, you got my attention. I then looked up CNS Vasculitis and the symptoms fit what I have been experiencing and what the doctors haven't been able to figure out so far (the symptoms also fit my father's history). I used to have severe headaches which developed into migraines with aura as I got older then what I think are TIAs that begin with a thump on the inside of one side of my forehead then momentary loss of vision in both eyes, dizziness, confusion, temporary numbness of nose and cheek bones and jaw on both sides of face, temporary mild headache, etc. One neurologist said he thought they were migraines (I think he's in denial, something I'm seeing a lot of in the medical profession these days.) The most recent TIA was Jan or Feb 2008. I was also having problems with crushing chest pain, heart flip-flopping, and bradycardia. The heart problems got worse while I was on various medications so after numerous tests, including a cardiac angiogram, ruled out a physical cause for the chest pain, I quit the drugs and the chest pain cleared up but then I developed cervical dystonia (or whatever it is, since my physicians can't even agree on that) on May 3, 2008, after staying up all night working on a project on the computer. The SCM spasm and hypertrophy followed the development of tendinitis in my right hand and wrist, a wave of sick feeling over my whole body that started at my head and moved downward until it reached my toes within a few seconds time, and hypothermia that lasted several hours despite a hot shower, turning up the thermostat, and crawling under several layers of covers with several layers of clothing on including a jacket. It was a similiar hypothermia event in 1985 that developed while studying for final exams that set off my 24 year saga of very weird symptoms and chronic muscle and joint pain that waxes and wanes in severity and seems to concentrate in different parts of my body gradually over time, with extremely painful, red, swollen joints in my fingers on one hand but not the other for a while which eventually clears up, then extreme pain will settle in my lumbar spine and sacroiliac joints for a few months then lessen and the extreme pain will move to another part of my body but with a chronic level of pain and fatigue everywhere, all of the time. A CT scan revealed that I already have calcified arteries in my brain (I'm 53), and other imaging tests have documented 49% blockage of my internal carotid arteries. Does any of this sound familiar?

Barb
 

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Hi Barb,

I really meant that your complicated family history and your own symptoms were puzzling to put together just like mine ;) It makes it hard for the docs when they have to consider all this. But with the right doc they get there in the end, hopefully you are close :)

Your tia like episodes do sound a lot like a complicated migraine from what I hear others say here. And if you have calcified arteries in your brain and a 49% blockage in your carotid artery then that could explain some of that stuff too. I had a lot of tests done to rule those things out as a cause of some of my symptoms. I'm not saying yours aren't related to lupus but they aren't similar to my presentation of CNSV.

Do you know if they have ever tested your clotting antibodies - anti-cardiolipin and lupus anticoagulant? That could explain some of that.

Mine were negative but with the particular symptoms I had and the evidence on brain scans with very specifically located lesions being active they felt confident enough to call it.

Likewise with the dystonia diagnosis being connected to my SLE. They ruled out a family history (dystonia's can involve an inheritance factor) and they ruled out lots of other things, amongst them certain meds that can cause dystonic reactions which people sometimes don't recover from even after going off the med. None of those applied. What a long arduous process it all was :eek: but necessary to get the right conclusion and therefore the right treatment. Movement disorders are very rare indeed with Lupus and the more usual one is Chorea, very few cases of Dystonia.

Let's hope they can put all the pieces of the puzzle together for you soon.

love
Lily
 

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Hi,
My family medical history was challenging, but nothing like yours! My sympathies and positive wishes to you. I found that lupus was hereditary in my father's side. Of my grandfather's 9 brothers and sisters, 8 of them died of stroke or heart attacks. My father and his 2 brothers have all had either heart attack or vascular/aneurysm problems. I have lost one cousin to lupus, she died at 36 of her 10th heart attack. Another cousin has autoimmune problems, but not yet diagnosed with lupus, she has 3 of the 11 symptoms. Fortunately, all 3 of us have been treated and cared for by my rheumatologist. Good for us.....and easy for him to identify and rule out similar issues.

I did end up having to work with a hematologist to rule out and identify some of the blood problems. It may be that you will need to bring one on board to help you identify some of the problems you have had.

Positive thoughts for you to get help in dealing with some of the issues you have had.
Sally
 

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Discussion Starter #8
Lily,

To my knowledge, I haven't been tested for anti-cardiolipin and lupus anticoagulant. Both tests are on my list of things to discuss with my rheumatologist and/or GP, if I remember to ask (I always have so much going on to discuss with them that I forget some things or we run out of time.) What I can't figure out is why, given all of my symptoms and my family medical history, my rheumatologist hasn't done these tests already.

One possible reason: physicians and nurses other than my GP and rheumatologist have told me that they know little or nothing about lupus and never test for it because it never comes to mind as a possibility because they know little or nothing about it and have no experience with it. I have been told I have to go to the Mayo Clinic or some other specialty clinic several hours away if I want diagnosis and treatment so I tried to do that but I had to keep going back which isn't feasible financially, physically, or time wise. I never received a diagnosis from the university clinic either because they couldn't figure it out and I couldn't afford to keep going back. Very frustrating. And now, because of the high cost of my medical care (or, more accurately, my pursuit of diagnosis and treatment), my husband may not be able to afford to continue to purchase health insurance for us and his employees come October. The deductibles are massive, beyond affordability now if something serious happens, and the premiums will be unaffordable if they increase any more.

I guess whatever will be will be.

Barb
 

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Discussion Starter #9
Some good news!

Thanks to the information I obtained from this site and, in particular, from Maia, Keebler and Lily, I was able to convince my rheumatologist to order a battery of tests today to help rule lupus (plus some other possibilities) in or out: skin biopsy, 24 hour urine collection, ANA, Anti Card. Antib. (X3), C3, C4, CRP, DS DNA, ENA Profile, ESR, Mixing Study, RA Factor, TSH, etc. I am also scheduled for another MRI.

At first, he just wanted to prescribe more meds to deal with the pain symptoms (as usual). Armed with the information I got here, I refused and said I wanted all of the tests necessary to get to the cause of all of my symptoms, including ruling in or out lupus, before I would agree to take more meds. Red, dull eyes, a flaming red face and burning skin helped.

He said it would take a while before all of the test results would be back. I am scheduled to see him again in April. Maybe an answer will be forthcoming.

Thank you everyone!

Barb
 

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Hi Barb,

Good for you! I am glad you stood your ground with the doctor. Just treating the pain is not enough. You need to treat the cause to lessen the pain.

Take care,
Lazylegs
 

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Way to go Barb :thumbs: He's missed something out that would be important given your circumstances.......The Lupus Anticoagulant.

love
Lily
 

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Discussion Starter #12
Hi Lily,

After reading your post, I went back to check the list of tests. I didn't understand all of the abbreviations so I had to look some up on the web. I am being tested for lupus anticoagulant. It was listed under the abbreviation DRVVT which I didn't include in my previous post because I didn't know what it was.

Thanks for looking out for me:)

Barb
 

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Barb you have done really well to insist on full investigations, bravo ! :)
I think the Mixing Study have to do with aspects of blood clotting problems too.
I hope you don't have to wait too long for results and that they prove useful Good Luck
Clare
 

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Discussion Starter #14
Blood tests and skin biopsy results

Hi all,

I had blood drawn for a full lupus panel March 6, delivered the 24 hr urine sample March 9, and had the skin biopsies taken last Wednesday, March 11. I sent my rheumatologist a fax requesting I be faxed the official test results as they came in but no faxes and no phone calls yet (my rheumatologist routinely withholds this info from me.) I also sent a fax to medical records requesting a copy of my complete medical record, including all lab test results, up to the present date but no response from medical records either. I have verified that the faxes went through okay.

The dermatologist informed me last week when I had the skin biopsies taken that I would receive the results of the biopsies today when I went in to have the stitches removed but I didn't; they said they hadn't received the results yet and that it sometimes takes 14 days or more but they seemed dishonest and evasive. They also had more questions for me. When I got home, I went online and learned the Skin Biopsy for Immunofluorescence takes only 48 hours so the results should have been available last Friday. I know some of the blood test results might not be available yet but most should be, so I'm getting very anxious. It doesn't help that I am feeling very fatiqued and run down today after having a brief reprieve yesterday and actually feeling energetic yesterday for a few short hours for the first time in many months.

What is/was your experience -- how long did your bloods, urine and skin biopsy results take?

Barb
 

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Hi Barb,

The urinalysis usually only takes a few days and the maximum wait for the other tests is 2 weeks. However the skin biopsy could take a couple weeks at least I would imagine from what others here have said.

If you have an appt in April it's quite possible your doctor won't release any results to you until you see him then and go over any abnormalities with him. This is pretty good practice (even though it is hard to wait). Not what you wanted to hear I know :(

Are you able to speak with your Rheumy over the phone? That's another avenue to explore before the appt. If he says its all fine then take your opportunity to ask for copies.

Hope this helps,

love
Lily
 

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What Lily has said is true. It really is good practice and commone for doctors to withhold results until your follow up appointment with them.

I always request when my blood is drawn to have the lab send a copy to my house. This is one way to avoid having this happen. I write on the bottom of the script cc a copy to patients home. My rheumy said that was fine with him so I do it on all of my scripts.

Moving forward let us know how it goes at your follow up appointment. For me, urine is usually in around 3 days later and my bloods results are typically back in 5-7 days.

Good luck and keep us posted.
 

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Hi Barb,

When I have a question with my rhuemy I call his nurse. For me I have to leave a brief message for the nurse and she calls back. That way she can get my chart and tell me something or write it down if I am having problems. Where I go is wonderful about calling me back the same day. My rhumey's nurse is so kind and compassionate.

Like the others though most doctors will wait till they see you next time. Sometimes I get a postcard saying the results were........ Then I call the nurse and have her explain it to me.

(((Barb))) I know it hard to be patient when you want to know right away.
Love,
Lyn
 

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Discussion Starter #18
Thanks everyone.

One of the reasons I'm so anxious is because I don't trust my rheumatologist completely. He's been stuck on the current diagnosis (fibromyalgia) for the eight years he's been seeing me even though I have never met the criteria for a diagnosis of fibromyalgia and have repeatedly pointed that out to him, begging him to get to the bottom of whatever is going on; he has refused up to now and is defensive. Because I don't trust him, I want to see the test results myself and he NEVER wants to share the actual results with me, only his spin on them. Christ, I'm 54 and he treats me like a difficult child (though less so than other physicians who have treated me.)

The other reason I'm so anxious is because if it's not lupus it may well be cancer; most everything else has been ruled out by my GP. Cancer, including leukemia, is in the family ... So I just want to know if it is or isn't lupus ASAP. I would prefer that it's none of the above but I have been so sick for so long, getting weaker with each passing month, that I know whatever it is, it isn't good. The sooner I know, the sooner I can start working on acceptance.

I will let you know what the results are when I get them.

Barb
 

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Results will take longer than 48 hours if they have to send them off to a pathologist and can't do them in house. Likewise for blood tests and U/A's. This could be one reason why they weren't back yet.

If you have *never* been able to get copies of your medical records, then I would be very suspect of the whole situation too. Did you fax an official release of records form to them or just a written request? Most doctors/hospitals will have their own form for consent to release information and will need that to be submitted before releasing forms. You may need to ask for that and send that in to them.

This is one reason why I do love where I receive my care (University of Iowa) because they are very open with test results and will send them to me automatically if I request that at the appointment. When you do it this way then there is no charge either ;)

Good luck. If you decide to get a second opinion, they can also request the information if you sign a consent form for them to receive it.
 

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Discussion Starter #20
Hi Maia,

I have never tried to get my complete medical record from my rheumatologist before, just some of the official lab test results.

I sent a fax requesting my records, not an official release form, which worked previously to obtain some lab test results (and I didn't receive a copy of the original, official results, but altered info which I'm suspicious of.) I figured they would call me or fax me the official release form if they needed but I haven't heard from them.

Barb
 
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