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Should I see a Rheumatologist?
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Should I see a Rheumatologist?

Hello everyone :)

I went to a dermatologist for a persistent rash that looked like tiny poison ivy blisters across my cheek and nose.  I thought it was an allergic reaction to something but as it turns out it was rosacea.  I was sent for a Lupus screening and came back with a positive ANA.  I was then sent for further blood tests that showed a positive RNP and it was concluded that it was Mixed Connective Tissue Disease.  The Dermatologist did a biopsy on my cheek and I go back in 2 weeks to see if I have Lupus going on in my skin where the Rosacea appears.  He mentioned that I should not be overly worried about the MCTD because it may mean that my symptoms may be lessened. He said it means that I have more than one autoimmune disease going on.

I don't feel completely comfortable with his explanation of MCTD after reading about it on-line.  He stated that we would just treat the symptoms of Lupus as they came.  I'm wondering if I should be seeing a Rheumatologist.  Is a 5.6 RNP always indicative of Mixed Connective Tissue Disease and if so how do they figure out which of the diseases are contributing to my problems?  Are there drugs that slow down the progression of these diseases?  

My face is swollen and I have stitches.  I feel anxious, exhausted and now I am noticing every ache and pain I've ever had.  You can't help but wonder if all problems of the past are connected to Lupus or MCTD.  

I would be very grateful for your thoughts and thank you for being an ear and shoulder to lean on.

Peggy

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14 Comments Post a Comment
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483733_tn?1326802046
You absolutely need to be treated by a rheumatologist.  GP's are not equipped to handle this.
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Hi peggy i myself have symptoms of mixed autoimmune diseases i.e lupus, sjogrens syndrome and crohns disease. A tthe moment i have positive reumatoid factor and low sodium level test results My symptoms have occurred over the past two years with the rash on the face the dry eyes and mouth. Persistant canker sores and persistent kidney stones being the most troublesome.
It is very frustrating waiting for a diagnosis especially when you would just like to have answers instead of feeling like a hyperchondriac.
It is always best to see a specialist and you should push for that as gp very often get it wrong listen to your body you know when something is not right.

Meanwhile in answer to yor question about medication to help cope with these symptoms unless they are very severe medications have their side effects which are not good for you.
I have done alot of research on autoimmune diseases and one peace of information i found a very good read was at:

  http://cinque.getwebspace.com/facts.html

Please read and consult these options with a specialist as it may be alot better option for you than medication.
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1210887_tn?1268677277
Thank you Trudie.  I got a referral today so I'll be making an appointment.  I'm really learning a lot about autoimmune disorders.  Maybe this will explain why I have always been so exhausted.

Thanks for your support :)
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1210887_tn?1268677277
Thanks for your help Tara.  I'm going to read the article you posted asap.  I was tested for sjogrens and it came back negative so I think I can rule that one out.  Plus my eyes and mouth seem to produce enough moisture at this point in time.  I am mostly just really sore and my back always hurts.  According to my Orthopedic Surgeon, I have a good amount of Arthritis in my spine for my age.  I have been treated in the past for depression.  It such an effort to just do the things I need to do every day.  I hate to complain to anyone because I often feel like they are thinking....  oh geez doesn't this girl ever feel well?  I'm tired of being tired.  So when anyone asks me I just say I'm doing fine thanks for asking even if I don't.

I wonder if they will find RA and maybe Chronic Fatigue.  I guess we'll see.  It's hard to wait.  Having to wait two weeks after each blood test for the appointment to discuss the results seems like an eternity.  

Thanks so much for reading my post and taking the time to reply.  :)  
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1210887_tn?1268677277
I was just sitting here thinking....  you know what else I forgot to mention....  I have a terrible time with my memory lately.  I wonder if anyone else has that problem too and is it a part of Lupus or other autoimmune diseases?
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483733_tn?1326802046
Memory issues are definitely included in this.  Welcome to our world!  It is very prevalent with Lupus and fibromyalgia and I have both.
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1210887_tn?1268677277
I have an appointment with a Rheumatologist for March 12.  Thanks for all of your support!  I'll keep you updated on what I find out.  

Peggy
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434278_tn?1324709825
Yes, I too have brain fog.  I'm very forgetful.  Write things down, but forget where I write them.  Or I reach for a pen and by the time I get a pen and paper, I've forgot what I went to write.  

Something you might want to do is, call the dr. that ordered the test and see if they will fax you the results.  This way you can research any findings prior to your appointment thus have your questions ready to ask your dr. at the next appt.
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1210887_tn?1268677277
Well it's official.  The biopsy came back with 5 out of 5 antibodies which means they are 99 percent sure it's Lupus.  :(
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434278_tn?1324709825
OH, I know this news is bitter sweet.  But I'm glad you were able to get a dx.  Now you can move forward.  I have done so much better on plaquinel.  It's like daylight and dark.  It took several months, actually I think it was 6 months before I could say, yes absolutedly it's helping.  

Praying for you sweetie.  Let me know if I can help.
Kara
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967168_tn?1343732745
Peggy,

I've read so many say that Plaquinel has worked wonders for them (here and other forums) so hopefully that will work for you.  Having a biospy on your face sounds painful, hopefully you're feeling better not sure I could handle having one done I'm such a baby.

Quick question - someone mentioned a low sodium level, what was that for? It's something I've questioned since mine went from 138/139 for years down to 135.
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434278_tn?1324709825
Sodium too low: Rule out Addison's disease (adrenal cortical insuffciency), diarrhea, overhydrated, malablsorption, diabetic acidosis, severe renal disease, ruptured or obstructed urinary system, overdose of certain drugs such as diurtics and blood pressure medications (like hydrochlorothiazide), excess antidiuretic hormone, nephrosis, hypoadrenalism, myxedema, congestive heart failure, and vomiting.
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967168_tn?1343732745
karajo; thanks I'll mention that to my dr and see what lvl it's at this time
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1210887_tn?1268677277
Hi Kara,

Thank you for your support.  I hope the Rheumatologist will put me on something to help.  I met with my primary care physician for a different matter and she asked to see my test results from the Dermatologist.  She seems to think that they only tell you to take NSAIDS for Mixed Connective Tissue Disease.  That the Lupus may be Discoid Lupus just showing up in my skin. She said she hoped that I don't have Lupus which I appreciate but I'm a little worried now that I will have to keep going as I am with nothing to make me feel better.  Maybe further testing by the Rheumatologist will show something more concrete.  

I will let you know after my appointment this Friday.
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1210887_tn?1268677277
Lisa,

Thank you for your comment.  The biopsy was not so bad really.  The intial shot stings quite alot but after that it's just a matter of healing.  I've been putting Mederma gel on it ever since the stitches came out so hopefully there will not be alot of scar tissue beside my nose.  I'm hoping they do put me on Plaquinel but we will see.  

Peggy
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434278_tn?1324709825
Peggy,
Discoid lupus symptoms are, of course, the skin lesions, thinning of the top layer of skin along w/ inflammation.  Aching joints are found in 10- 20 % of patients w/ DLE.  Positive ANA are found in about 50%.  Other antibodies are seen in less than 10%.  Anemia maybe observed in 20% and low white blood count in 50%.  Usually the lesions scare the skin w/ DLE and do not itch.

Treatment is advised.  DLE is managed by avoiding the sun and by using sunscreems, antimalarial drugs (plaquinel) and steroid ceams.  Sometimes steroid injections are helpful.  Severe resistant lesions may require antileprosy drugs, oral corticosteroids, asathioprine, or nitrogen mustard ointment.  .  

There is another condition called subacute cutaneous lupus erythematosus.  it does not scar the skin and is not thinck and scaly.  They usually don't itch.  75% are sun sensitive, 65% have joint aches, but less than 10% have organ complications.  2/3 have positive ANA and anti-Ro (SSA) test.  The treatment is retinoid (vitamin A).  

Are you familar w/ the 11 criteria of lupus?
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1210887_tn?1268677277
Thanks for the information Kara!  Yes I am familiar with the criteria but if you wanted to post it for people who might read this, please do.

I do have the lesions but they do not seem to scar.  The Rheumatologist that I saw on Friday didn't even mention discoid Lupus even though my Primary Care doctor did.  So we'll see.

Right now we are waiting for the results of all the blood that they took and the xray of my lungs and the urinalysis.  I am also scheduled for an echocardiogram and a sleep study to boot.

He thinks right now that it is low level lupus.  He has me continuing the ibuprofen and acetaminaphin that I am currantly taking for the fatigue.  I go back to see him again on April 27th so hopefully I will have more answers and something a little better to hold the lupus at bay.

My anti-Ro (SSA) test was negative last time it was checked but the RNP was positive at 5.4 I think it was.  It was indicative of Mixed Connective Tissue Disease and I think Lupus happens to be a part of of the mix in my case.

Talk to you soon,
Love,
Peg
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434278_tn?1324709825
A positive anti-RNP occurs in some patients w/ lupus but also in other relatd diseases.  At high levels suggest MCTD and at low levels supports the dx of SLE.  So just becasue you have the antibody doesn't mean you have MCTD.  A dx of MCTD comes along with (none other than) criteria that fits that dx too.  It is a cross over between lupus, and other things.  So you would fill the criteria of all those other diseases as well.  Not a pretty picture.  

God bless you sweetie.  Hope you are having some good days.
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