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scubagramplit
07-22-2010, 11:16 AM
My GP just got results of blood tests. He is not sold on lupus however he said I deffinetly do have some autoimune dissorders going on. The three issues on the blood test in question are: Smooth muscle AB titer, smooth mujscle AB out of range, 1:20 H. Smooth muscle AB W/refl titer, smooth muscle AB screen out of range, Positive *. Sjogren's antibodies (SS-A, SS-B) , SSA out of range, 8.0 pos *. two other parts that he didn't mention which apparently is the blood, CBC. MCH out of range 33.5 H. & absolute eosinophils, out of range 0 L. All this doesn't make alot of sense to me however I do understand that I may have sjogren's, maybe that is why my feet feel like they are burning most of the time and with out taking active lipoic acid they hurt realy bad to stand on or walk.
And to top all that off there is a good possibility I will be losing my job today. Yeehaa.:<(

wolfwhisper
07-22-2010, 04:34 PM
Unfortunatly, I don't know much about blood tests. I just thought that I would let you know that you aren't alone without a diagnosis and still going through blood tests.

Last Friday, I went to the doctor to get my blood test results. The thyroid medicine she put me on has my thyroid working properly again. The problem? As soon as I got home, was swamped by a quick dose of depression and have been hurting non-stop.

I hope you can keep your job. It's not right that they can fire people (depending on the position, anyway. Then they should give you a desk job or something easier) when they have an auto-immune problem. Or any other health problem, for that matter. Keep your chin up, and everything will turn out fine in the long run.

scubagramplit
07-22-2010, 04:57 PM
Thanks wolf, it is all in Gods hands the way I see it. I have had a diagnosis for a little over a year but new doctors have to prove for themselves which I guess I can understand. Take care. Jim. And I don't know what all this shaking in my hands is all about and I've been feeling anxietied lately, I think something is changing in my body again, I don't like it.

Bonita
07-22-2010, 06:31 PM
That is all we can do to be here for each other and the rest is in The Lords hands. Hope you get some answers real soon. Love and prayers Bonita

wolfwhisper
07-22-2010, 07:21 PM
I've been trying to get a diagnosis for too long. The doctors suspected lupus, but it was never an official diagnosis. Now I can't even find a doctor to listen to me. The way I see it though, is that if god wanted me to know what's wrong, he would let me know. I might not be ready for it, so that's why I don't know yet.

I'm sorry, but unfotunatly, I don't know about the shaking and anxiety. I'd definitly talk to the doctor about them though.

Nonna
07-23-2010, 04:02 AM
I see a lot of bible quotes here. Please read Matthew: 28-30. I find it comforting along with the Serenity prayer.

Sometimes a diagnosis causes more problems with our lives; than not having one. Think about that-you know you have Lupus. But how does the world: work and insurance companies react. Have a think on that

Hugs and prayers,
nonna

scubagramplit
07-23-2010, 06:02 AM
Nonna, which chapter of Matthew? Only has 28 chapters and chapter 28 only goes up to verse 20.

I see a lot of bible quotes here. Please read Matthew: 28-30. I find it comforting along with the Serenity prayer.

Sometimes a diagnosis causes more problems with our lives; than not having one. Think about that-you know you have Lupus. But how does the world: work and insurance companies react. Have a think on that

Hugs and prayers,
nonna

scubagramplit
07-23-2010, 06:06 AM
Well, it's official, I am now unemployed. I will now be checking on disability. Wow how things can change so fast.

Saysusie
07-23-2010, 10:32 AM
Scubagamplit;
I am SO SORRY to hear about the loss of your job. Now, you must begin the frustrating process of DIB or Soc Sec or UIB. Whichever, it is tedious and, sometimes, downright unfair.
Would you like me to research your lab results to give you an indication of what the doctors might be thinking? I am very happy to do that for you if you like.
I cannot tell you how sad I am to hear that your time of reasonably good health is dwindling away and that you are now facing new symptoms that seem to be causing you stress. I am glad that you doctor at least recognizes that there is some type of auto-immune issue happening, even if he does not want to commit to a diagnosis of Lupus at this time. As you mentioned, each doctor must have his own proof and is not that willing to accept another doctor's diagnosis. Fortunately, you are learned enough about Lupus and auto-immune disorders, and you know your own body very well. So, regardless of their uncertainty, you know how to guide them in their care for you.
I am keeping you in my thoughts and in my prayers. Please let me know if you'd like me to research your lab results.

Peace and Blessings
Namaste
Saysusie

Nonna
07-23-2010, 04:02 PM
Nonna, which chapter of Matthew? Only has 28 chapters and chapter 28 only goes up to verse 20.

Dang it's Chapter 11, shame on me......
Bad Catholic doesn't remember how to quote scripture,

scubagramplit
07-23-2010, 06:09 PM
That is quite allright, if it were me I would blame it on the lupus, anyway thanks, I will be looking that up. Jim.

Dang it's Chapter 11, shame on me......
Bad Catholic doesn't remember how to quote scripture,

scubagramplit
07-23-2010, 06:20 PM
Susie, I would love it if you could decifer the boodwork for me, The one thing that stays constant is the fact when I try to taper off the prednisone the fatigue just overwhelms me, the docs may not think I have lupus but you put that into the equation and they do not have an answer. Would sjogrens cause fatigue? I will deffinetly start doing some research on that, after all I do have the time now, haha. One must keep his humor about him:~) Also I saw the dermatogist today and the little spot on my cheek she said was pre-cancerous so she freezed it, really looks pretty now but I am sure that will improve in no time. the butterfly shaped rash on my face she said is rosacea. Oh well. Not much I can do about it at this point.

Hillbillie
07-23-2010, 08:32 PM
Jim,
I am glad that you are going to get help deciphering all those blood tests... Makes you wonder if the doctors know thnigs or if they are just guessing! I have talked to people on here that I believe could do much better job diagnosing.
I am so sorry that you lost your job. I know that is not easy to handle. My husband and I both lost our jobs. I can say through it all I can say is God is Good. We have had plenty of everything we really need. He promises that he will never leave us nor forsake us. This is the time to lean on His promises. We have found that in the valley the walks in the garden are so precious... Billie

scubagramplit
07-23-2010, 08:57 PM
Thanks for the support Billie. I know this is a hard disease to diagnose, especially after doing a little research on sjogrens there are a lot of similar symptoms. A couple of them are the dry eye's and mouth which I do have however they did not come about until after I started taking prednisone. I have had a soar in my nose for I don't know how long, I've noticed that it is much worse in dry climates but as far as my whole nose being dry that is not the case, it is a definate soar in one spot that gets worse in the dry weather. I checked out your profile, you like to quilt, my wife quilts along with one daughter. I should start taking pictures to post. Thanks again. Jim.

Hillbillie
07-24-2010, 10:04 PM
Jim,
Yes, do post some pic's of your wife and daughter's quilts. I used to quilt with my Mom. I don't feel like doing it much anymore but when I can I try to get in a few stitches. I am not a professional at it but I love patchwork. My Dad always said that was the silliest thing he had ever seen. Taking perfectly good pieces of cloth cutting them up sewing them back together when you could sew it up and be done with it and it'd still keep you warm. He was right but it wouldn't be as pretty. I keep saying I will post some pictures but seems like what little time I'm on I am on the forum and forget to see if I can figure out how.
Take some time to rest up. You will probably realize you have been pushing yourself harder than you imagined. I hope that you get an answer but sometimes no one is able to give you one. My diagnosis was Lupus like auto immune... so really I don't have a definite diagnosis either. They have me on all the meds for Lupus, I take prednisone (the only one I actually KNOW works for me) Plaqunil (anti malaria)and Asathioprene(anti rejection for kidney transplant). Ultram and flexeril for the pain and helping me sleep a little at night. I should be good if my kidney gets switched or if a mesquito bites!!!
You take care. Put your hand in the hand of the man who calms the sea... I love that old song.

jmail
07-25-2010, 08:35 AM
scubagramplit Jim, do you get sores in your mouth also? I was told my facial rash was rosacea also... and another time that the sores on my scalp were psoriasis... and another time that since I was a man, I couldn't have lupus... hmmmm... After almost 20 years of it, it seems I "all of a sudden"-like have lupus... 'Course, it's a hematologist that said it, so I'm sure they can't be believed... lol & tic

Sorry to hear about you losing your job. Is possibly just temporary while the economy is slow, that they don't need to train as many linemen?...

Angel Oliver
07-25-2010, 02:40 PM
Oh im so sorry you are so anxious and that you lost your job and are going through it right now. Yes life changes so quickly,but i believe everything happens for a reason.I am hoping soon life gets a littlle better and you get some proper answers on your health.Keep posting and know we are here for you.
love
Amanda.xxxx

scubagramplit
07-25-2010, 09:51 PM
Angel, I am not woried to much at this point about life getting better, I have worked hard all my life and live had been good just the way I wanted it to be just to watch everything I have worked for go down the tubes. I am thinking that maybe I have put my priorities in the wrong place, We have family that is helping us and it is going to end up helping them also and that is something that God wants us all to do. Yes I lost my job but I still have my family that I love and I know they love me and God loves us all, What more could someone ask?
Jmail, yes I get soars on my head that come and go and I get soars in my mouth and nose that come and go, blisters like things that come and go in my mouth and little pimple like things that come and go on my head that itch and it seams that I am always getting itchy spots all over my body. I am not convinced that the rash on my cheeks that have the butterfly shape is just rosacia. Naturaly with all lupus patients we tend to do a little research especially on this web site and everything that I have learned on this site tells me that the dr.s are not always right. Thanks for all the support and take care. Jim.

Saysusie
07-28-2010, 01:43 PM
Hi Jim;
Here is what I found out about your lab results:

SMOOTH MUSCLE ANTIBODY TEST:

This test and the ANA test are ordered when a doctor suspects or wants to rule out autoimmune disorders, specifically , hepatitis. The tests are usually ordered when a patient presents with symptoms such as fatigue and jaundice along with abnormal elevated findings on routine liver tests, such as the aspartate aminotransferase (AST) and/or the bilrublin test.

The SMA and ANA are also ordered to help diagnose and/or rule out other causes of liver injury. The doctor uses this test with Lupus patients in order to
distinguish autoimmune hepatitis from SLE.
A normal results means that there are not antibodies.


Generally, a positive test may be due to chronic active hepatitis, Cirrhosis, or infectious mononucleosis.
In most cases, a normal Titer is below 1:80. Anything above 1:80 is considered positive. Now you say that yours was 1:20..that does not appear to be out of range to me, but each lab has it's own guidelines for what they consider to be out of range!



SJOGREN'S ANTIBODIES TEST:

Sjogren's antibodies, called SS-A (or SS-Ro) and SS-B (or SS-La), are specific antinuclear antibodies common in people with Sjogren's. However, you can have Sjogren's without having these ANAs. Sjögren's syndrome can exist as a disorder in its own right (Primary Sjögren's syndrome) or it may develop years after the onset of an associated rheumatic disorder such as rheumatoid arthritis, SLE, scleroderma, primary biliary cirrhosis etc. (Secondary Sjögren's syndrome).
Blood tests are be done to determine if a there are high levels of antibodies that are indicative of the condition, such as (ANA) and rheumatoid factor (because SS frequently occurs secondary to Lupus and/or rheumatoid arthritis), which are associated with autoimmune diseases. The typical Sjögren's syndrome ANA patterns are SSA/Ro and SSB/La, of which SSB/La is far more specific; SSA/Ro is associated with a number of other autoimmune conditions, but are often present in Sjögren's.


CBC merely means Complete Blood Count:

The CBC is used as a broad screening test to check for such disorders as anemia, infection, and many other diseases. It is actually a panel of tests that examines different parts of the blood and includes the following:


White Blood Cell (WBC) tests: a count of the actual number of white blood cells per volume of blood. Both increases and decreases can be significant.
White Blood Cell Differential: looks at the types of white blood cells present. There are five different types of white blood cells, each with its own function in protecting us from infection. The differential classifies a person's white blood cells into each type:neutrophilis(also known as segs, PMNs, granulocytes, grans), lymphocytes, monocytes, eosinophils, and basophils.
Red Blood Cell Count: is a count of the actual number of red blood cells per volume of blood. Both increases and decreases can point to abnormal conditions.
Hemoglobin: measures the amount of oxygen-carrying protein in the blood.
Hematocratic: measures the percentage of red blood cells in a given volume of whole blood.
The platelet count: is the number of platelets in a given volume of blood. Both increases and decreases can point to abnormal conditions of excess bleeding or clotting. Mean platelet volume (MPV) is a machine-calculated measurement of the average size of your platelets. New platelets are larger, and an increased MPV occurs when increased numbers of platelets are being produced. MPV gives your doctor information about platelet production in your bone marrow.
Mean corpuscular volume (MCV) is a measurement of the average size of your RBCs. The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in anemia caused by vatimin B12 deficiency. When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron-deficiency anemia or thalassemias.
Mean corpuscular hemoglobin (MCH) is a calculation of the average amount of oxygen-carrying hemoglobin inside a red blood cell. Macrocytic RBCs are large so tend to have a higher MCH, while microcytic red cells would have a lower value.
Mean corpuscular hemoglobin concentration (MCH/MCHC) is a calculation of the average concentration of hemoglobin inside a red cell. Decreased MCHC values (hypochromia) are seen in conditions where the hemoglobin is abnormally diluted inside the red cells, such as in iron deficiency anemia and in thalassemia. Increased MCHC values (hyperchromia) are seen in conditions where the hemoglobin is abnormally concentrated inside the red cells, such as in burn patients and hereditary spherocytosis, a relatively rare congenital disorder.
Red cell distribution width (RDW) is a calculation of the variation in the size of your RBCs. In some anemias, such as pernicious anemia, the amount of variation (anisocytosis) in RBC size (along with variation in shape – poikilocytosis) causes an increase in the RDW.

I think that I covered all of the tests that you had questions about. Please let me know if you need anything further.
I do love your attitude about being thankful and grateful for what you do have (your family that loves you, especially). I hope that with their help and your attitude, things will turn around for you. You have worked so hard, for so long. I am sending you my thoughts and want you to know that we are also here for you!!

Peace and Blessings
Namaste
Saysusie

scubagramplit
07-28-2010, 04:10 PM
Susie, I don't know how to thank you, for all this information that must have taken some research, and also for everything that you do for everyone on this site. You are a rock that holds us all up. We will be moving this weekend and I already have an appointment set up with my old rheumy. One thing about it, he was the only one to say that he was 99.9% possitive that I have lupus and then he went on to explain that he interned at on of the leading lupus clinics on the west coast and that he new lupus. I feel confident with dr. Greene. Thanks again, I will keep all updated as things progress. Jim.

Nonna
07-29-2010, 09:12 AM
Good Luck and God speed

mountaindreamer
07-29-2010, 08:03 PM
hi jim,

so sorry to read about all of your new trials. i am glad to hear that you will be able to go back to your rheumy that you like. I hope he will be able to help you put an answer to all that is going on.

and thank goodness for saysusie,,,,,she is always here to research, to answer questions, and to ease our worry.

take care, jim....hope the move goes smoothly.

Linda From Australia
12-17-2010, 03:39 AM
Jim just wondering how you are doing, and what you are up to now days. You have had a difficult year and had to make some difficult major changes in your life.

scubagramplit
12-17-2010, 03:50 AM
Things are not going all that great. Chemo did not work and have been working on tapering off meds. Still taking 200mg plaq. twice daily (personally I have never felt that plaq. has done anything for me) and 5m prednisone tapering down 1mg every three weeks. I have come off a lot of medicine in not a long time and then through life in on top of that and what a wonderfull week:~) as the pred. goes down the fog increases along with the fatique and I must say I am surprised how much of fibromyalgia pain the prednisone controled. I did get filed for SSDI, we will see what that will bring. Sorry not very happy today. chat later. Jim.

Nonna
12-17-2010, 04:00 AM
Hi Jim,
I'm sorry to hear that tapering off is not going good for you. I'm back on prednisone myself. But I just wanted to give you this

Psalm 130 it's short, but I like it; I find comfort

nonna

scubagramplit
12-17-2010, 05:18 AM
That is great Nonna, Thanks. After so manny days of tears of grief this verse brings me tears of joy:~)