autoimmune disease/connective tissue disease? what could this mean?

WHAT CAUSES MODERATE POSITIVE SM-RNP AND POSITIVE ANA 1:80 SPECKLED BUT NEGATIVE SM AB? SYMPTOMS OF MANY AUTOIMMUNE DISEASES SEVERE SYMPTOMS! MOSTLY LUPUS AND SCLERODERMA BUT SCL70 TEST NEG. BEEN SICK FOR 12 YEARS WITH RASHES, SUN SENSITIVITY, SEVERE JOINT, MUSCLE,BONE PAIN ,JOINTS ARE VERY STIFF,SEVERE FATIUGE,KIDNEY PROBLEMS,ADULT ONSET SCOLIOSIS,VITAMIN D DEFICIENCY,GASTRITIS,ESOPHAGITIS,GALLBLADDER REMOVED FROM GALLBLADDER DISEASE AND STONE,MALAR RASH,RAYNAUDS THAT IS GETTING SEVERE,CANT THINK GETTING WORDS CONFUSED AND NO SHORT TERM MEMORY,EDEMA,HEADACHES,NOSE ULCERS,HAIR FALLING OUT,PETECHIA,ANEMIA OFF AND ON, BLOTCHES UNDER SKIN DAILY WHEN IN LIGHT OR EMOTIONS OR EATING,HYPERTENSION,FAST HEART RATE ,TOO MANT TO LIST. ANA HAS BEEN NEGATIVE UNTIL RECENTLY ,HIGH SED RATE ,AND CRP,CREATININE BORDERLINE LOW,RDW HIGH,PLATELETS ARE LOW NORMAL, HAIR COMES OUT IN GLOBS,SHORTNESS OF BREATH ,CANT FIND A RHEUMATOLOGIST TO BELIEVE ME . THE ONE I SEEN SAYS BECAUSE THE ANA WAS ON THE LOW SIDE IT DOESNT MEAN ANYTHING AND MY JOINTS ARENT REAL SWOLLEN BUT MY FINGERS ARE SO STIFF THEY WONT HARDLY BEND AND I CANT HARDLY WRITE OR TYPE ANYMORE WITHOUT HURTING ALL NIGHT. CAN SOMEONE PLEASE TELL ME WHAT A SM-RNP THAT IS 47 MODERATE POSITIVE WITH THE ANA 1:80 SPECKLED AND ALL THESE SYMPTOMS GETTING WORSE MEAN? I AM NOT ON ANY MEDS FOR PAIN OR TREATMENT. NO MEDS THAT WOULD CAUSE THESE SYMPTOMS EITHER. PLEASE HELP!

[karajo]

OK Samantha, I'm going to try to give this a school girl try.

If the Sm is seperate from the RNP - a positive Sm is an indicator of lupus (SLE.  

The positive RNP is found in lupus along with mixed connective tissue disease.  Although there are additional symptoms that go along w/ MCTD.  A small number with scleroderma or rheumatoid arthritis also have positive RNP.  So it is required for a dx of MCTD, but not specific to that disease.

I'm not sure I am understanding your lab though.  I'm not sure I've ever heard of a Sm AB.  Is this a new test?

Your symptoms sound so much like lupus.  And there is something called ANA negative lupus. One must have at least 4 of the 11 criteria for lupus dx.  Are you familar with them?    In those w/ neg ANA lupus, 1/3 had antiphospholipid antibodies and 1/3 had biopsy documented kidney lupus.  Of the remaining 1/3, half ultimately became ANA positive.  

I know how frustrating this process is.  I know I spent time in the sun prior to my ANA being checked.  It went from 320 and 640 to 2,560.  That got their attention.  (I spent about 15 min. on a hot July day)

[SAMANTHAP6]

Thank you so much for your reply! My test results confuse me too. Here is what they say : Test Name- Sm Rnp Ab, / Sm Antibody -Reference Range <20 negative  /My Result is : 80
My Result : 43.0 Moderate Positive. So as you can see my Sm antibody is
negative but my SM-RNP AB is moderate positive. I dont understand that
because I cant sind anything about a SM-RNP AB only a RNP or a Sm antibody? Its got me puzzled! My ANA has always been negative until they did this test it was Positive 1:80 speckled but the Drs said it is low positive and it really doesnt mean anything! I explained to them I cant go in the sun at all because I break out in blotches everywhere and swell everywhere! My rash I get on my fingers,knuckles,and legs will get worse and about 3 days later I will start feeling awful! I even have to cover my windows with special curtains to block out any sunlight ! I havent been outside in the sun in over 7-8 months! I can only go out in the evenings after the sun is out and even then the heat makes me sick! I get the same reaction at dept stores and i get very sick from computers! I noticed for about 3 years now I get disorentated and dizzy from computers and I get shaky like Im going to pass out just as if I was in the sun and start itching on my hands and break out in the butterfly rash.But the butterfly rash omly stays for a hour or so! But I have noticed it is doing it more frequently and I will get hot and flushed all day now! My symptoms are getting worse and worse by the day now! I have almost every symptom of every rheumatic/autoimmune disease! I am developing alot of scleroderma symptoms recently which I havent had before! My pinky finger is spreading away from the ring finger and is starting to look very deformed! I cant bend it hardly anymore and it feels like its broken sometimes although I know I havent hurt it! I have developed scoliosis in the past 3-4 years and my back is getting horrible! I was diagnosed with chronic gastritis and esophogitis about 4 years ago but never had any problems until now ! My throat is so dry and my mouth to the point I cant hardly swallow food it feels like its ripping my throat open! My raynauds is getting severe and I have to take hot baths 3-4 times a day just to get my feet and hands warm! They stay blue-purple until i run hot water on them ! I am starting to get alot of pain which I didnt have before just touching cold things and I get tingling and numbness! I am dreading winter because it wasnt like this last winter! My joints/muscles/bones all hurt everywhere especially my hands,fingers,hips,shoulders,and ankles! My hips r so bad I cant sleep on one side very long without rolling over every 10 minutes! My chest hurts and the shortness of breath has me where i cant do anything! Cleaning my bath tub makes me feel like I am smothering and cant catch my breath! Even talking wears me out! Im getting very scared yet the Drs havent given me anything except bp meds. They dont take me seriously even though just walking into the office makes my heart rate go up to over 100 bpm! It stays in the 90s when im sitting! I have 6 children that I want to be enjoying activities with yet I am unable to hardly get up! I force myself to get up and do things but I end up paying for it big time! I homeschool my children and I cant hardly bend my fingers to write with a pen or pencil most days! Its not like a flare its everyday getting worse with no end! My rash is coming back pretty bad and wont go away yet my Dr said she thinks its scabies! I told her I have dealt with this for 12-13 yrs now and its not scabies! There is no way possible I am a clean freak and I dont go antwhere but to the grocery store and back home! My children are always with me and arent in public school or have never been in day care ! They have only spent the night away from me when I was in the hospital during pregnancies! Everywhere I go my husband and kids go! we do everything as a family! not only do we love it but our children do too! They are very loving and everytime we go in a resturaunt to eat people come up to them and tell them how well mannered and sweet they are! It breaks my heart that this illness is keeping me from being able to go do all we did before and now its like a job to get up to get to the grocery store ! By the time I get home I am so exhausted I fall asleep eating or reading to my 3 year old! This is not how a 28 year old should feel! The drs say well 6 kids is the reason u r so fatiuge! But that just isnt true! I have always been able to push through fatiuge and keep going but not now! I wanted to ask u another question if u dont mind , my Dr just ran some more blood tests called : C3,C4,sed rate,CRP,Centremere? for scleroderma,anti ds DNA,and HCV with another test that goes along with the HCV and I missed the call for the results yesterday but she told me to call Monday to discuss the results and said she called in a rx . The rx was for vitamin D 50,000 . I have had a vitamin D deficiency for 2 years now and been on that rx I dont know if she relizes that because I have only seen her 3 times but she didnt do a vitamin d test or any test that would include vitamin d levels ,do u have any idea what could be wrong for her to call that in?I know she said it has to do with the blood work results but do u think any of the tests showed something like lupus or scleroderma? I read there is a link between scleroderma and vitamin D deficiency online and many people with lupus also have deficiencies! Do you have any clues to why she called that in?

[karajo]

Samantha,
First of all, I commend you for homeschooling your precious children.  I have homeschooled for 23 years and have 5 more to go.  I can understand your frustrations.  I tried to muttle through homeschooling and field trips.  I usually sent them into the building and assigned another mom to look after them while I sat in the car.  Then all the drs. appointments.  All the while I was our homeschool group's president.  

I don't know what to tell you about the Sm Rnp Ab test.  I would definitely ask the nurse when they call Monday.  

I don't know why they would call in the D prescription when they didn't check your D level.  Although it is very common for people with autoimmune diseases to be deficient in D.  From what I've studied, it is because the mechanism in your body that converts sunshine to D is broke.  I know that is layman's term.  

I can't remember what the Centremere shows, but the C3 and C4 show kidney function, Sed and CRP show inflammation, Ds DNA would indicate lupus flare activity and would be a definite dx, and I don't know what HCV is. They are definitely suspecting an autoimmune disease.  Is it your GP that is running these test or is it the rhemy?

I am praying really hard for you.  
God bless

[auspiciousresilience]

I have a lot of the same symptoms as you, not as many tests/results, but what I did do helped a lot:

I fainted and get dizzy all the time so my pcp/fam doctor (they are the same thing right?) Ordered me an ANSAR test and then from that a cardiologist saw me and put me on midodrine...being fatigued/groggy/confused all the time could be caused by fluctuations (mostly low in blood pressure) and relieved by vasopressors or something else like midodrine.

I feel loads better on midodrine...doesn't relieve all lupus like symptoms but helps the worst of them. I believe in negative ana test lupus....yyour pain is real, you aren't crazy!!
There are solid scientifitic reasons that cause negative ana....chemotherapy is one of them. I also have scoliosis (juvenile onset) and am wondering if the radiation exposure could reduce ana levels like steroids and chemo do. It is just a thought but there are way too many commonalities between my symptoms, your symptoms, and the symptoms of lupus!!!

[matilda587]

can plaquenil suppress your ana results.Its been possitive for 3 years testing,now after plaq for a year...its negative.

[karajo]

I don't know if I know the answer to your question.  But I do know that the last time they checked my ANA it was neg and the dr. was thinking I maybe didn't have lupus  But a nurse at the lupus foundation told me that the ANA fluctuates, can even go from positive to neg., and is not an indicator of disease activitiy.  

I do know that sun exposure can cause the ANA to be very elevated.  But I haven't tried this while on plaquinel.  

[Tammale]

Has the doctor done a skin biopsy?  Five years ago I was diagnosed with fibromyalgia because my blood tests showed everything to be normal. Recently I went to a dermatologist for a skin and scalp condition (previous dermatologist just blew me off and said I had eczema). She did a blood test for dermatomyositis and it came back normal. We decided to do a skin biopsy to pinpoint what the rash was and it did come back as dermatomyositis. I would suggest seeing a different doctor and ask that they try different tests if the blood test comes back normal.

I am considering trying the Life Vessel but it is an expensive alternative treatment. There are only a few in the US.  If you type in Life Vessel on YouTube you can see what it is. I'm still unsure about it but I prefer not having to take steroids and other meds just to mask the symptoms.

I feel your frustration. I do hope you find out what is wrong and can find a cure.


God bless.

Tammy

[SAMANTHAP6]

I am very interested to know what showed up on your skin biopsy if you dont mind if you would rather not say thats perfectly fine but my Dermatologist did a skin biopsy of my chest where I get blotches and not the (MAIN COMPLAINT) MY FINGERS AND HANDS!? but my SSDermatologist works with my Rheumatologist who has misdiagnosed me and may be (or not ?) protecting him! I cant really unerstand the words used in my biopsy results but actually the pathologist mentioned Dermatomyositis! He said the characteristics of it werent seen in the examined section however a a small %of patients with Dermatomyositis have negative findings! Keep in mind this is a blotchy rash I get on my chest upper back and shoulders that is under the skin not even the rash I have all over my fingers that is raised and my Derm dx as Dishydrosis or Dishydrotic Eczema which I know it isnt this because when I read what Dishydrosis is it doesnt even come close to sounding like my rashes! It is from sweating and I never sweat not even under my arms! I have been told I have a condition where I dont sweat! So I knew not to trust this DX at all! It also says it gets on palms of hands and soles of feet! I have NEVER had it on neither!  But maybe you could tell me if any of this sounds like your Skin biopsy this is some of what they found in my biopsy of my photosensitive rash on my chest and upper arm: "There is Epidermal Spongosis with intraepidermal vesicles containing lymphocytes. Mild to moderate dermal perivascular lymphocytic infiltrate is present". This is what the pathologist commented but my dermatologist metined she actually called the Pathologist working on this and I find that disturbing especially when she only did the biopsy to more less prove to me I dont have a autoimmune disease ! I feel this is why she took the biopsy of my chest and not the rash I told her is my main complaint on my fingers! I didnt even tell her about the blotches! she noticed them. When I asked why she wouldnt do my fingers her answer was "All it will show is inflamation (inflammation) because they are so swollen and inflamed! But any advice would be appreciated!