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lynday
04-11-2012, 01:28 PM
Hello everyone,
I wanted to take this time to introduce myself and thank anyone in advance who can help me out. Let me start off by telling each and everyone of you who suffers from any kind of disease that i am truley sorry, and that my heart poors out to each and everyone of you. I have a few concerns since I am so new at this. I have been too several dr's and have gotten many different answers to what could be going on with me. I'm 43 I have three children. I take good care of my self. Eat right work out and very active. A few months ago i went to the dr. with a few symptoms that have been bothering me example: confusing, fatgui, numbness in my toes, cheeks and fingertips, tingeling on my right side., muscle weakness, dry eyes and joint pain. The dr. took a blood test and my ana came back positive 1.640. I was told to go to a reumotoid dr. more tests and a high RNP of 3.7. The dr. told me i could have mixed connective tissue diease. on top of fibromyalgia and raynords. He mentioned early stages of lupus but was unsure. I am now going to a third dr. with more symptoms. recently i have been getting infections, i developed an allergy to shellfish and although i have always been allergic to sulffer it has never been deadly until recently when my face burned up and i had breathing problems. I do not have the rash and my hair is not falling out. I also do not have a history of lupus in my family. My question is can you have lupus without the rash and hair loss and is there something else in your blood work that needs to be positive other than ana and RNP.

I want to thank you in advance for taking the time out to help me understand what might be going on with me.
lynday

tgal
04-11-2012, 03:13 PM
Hi Linday,

The answer to your question is a definite yes. Only about half of all Lupus patients have the malar rash (the one across the face) that you are talking about and only some of us lose hair. Lupus hits everyone differently. It attacks us all differently.

The part about the tests are a bit harder to answer. There is no actual test for Lupus. There are indicators that, when combined with symptoms and all other potential causes have been ruled out, lead to a Lupus diagnoses. I will add a link that will take you to a page that explains how Lupus is diagnosed at the bottom of this page.

I am sorry that you are having AI (Auto Immune) issues but I am glad that you found us

How Lupus is Diagnosed (http://forum.wehavelupus.com/showthread.php?2592-Criteria-for-Lupus-Diagnosis)

lynday
04-11-2012, 03:23 PM
Mari,
Thank you so much for your reply. I just wanted to ask one more question. can you have lupus if your ana and rnp is postive but your ds-dna is negitive? so sorry that you are going through this. my prayers are with u always.
Lynday

ritzbit2
04-11-2012, 03:36 PM
I have a positive ANA and RNP and have never had a positive ds-DNA. It is just one more test that can help with a diagnosis if it is positive but not everyone will be positive for the same antibodies when they get a lupus diagnosis.

lynday
04-11-2012, 04:26 PM
ty for ur post ritzbit2. as i'm so new to all of this. i also wanted to point out another few symptoms...most nights i feel nausa. two nights i woke up choking on my throwup and one day i opened my mouth and out it came ( ok i know this is gross sorry). I also developed a fungus on my toe nail and my finger. There are times when i break a blood vessal in my fingers just by holding a pen . so weird. i also developed a little acne on my back and face. I thought it was just because my body was changing but now i think it is all related. I'm a little nervous and think that at my next dr's office visit that my ana and rnp will come back negitive. i know that its just a dream but one can hope. Although being diognosed with raynords and fibromyalgia, i'm sure the tests will still be postive. There is so much i need to learn my head is spinning.

SleepyInSeattle
04-11-2012, 05:37 PM
First - I am so sorry you are going through all this...but really glad you have docs that are investigating and helping you. Once they have some solid theories on what's happening, there's a good chance you'll get some relief!!!! There's no cure for this stuff, but there ARE treatments.

Sometimes it is hard to determine which things are disease-related and which things aren't - not EVERY bad thing that happens to you, health-wise, will be connected to Autoimmune disease. But it's important to TELL your doc about everything that happens. Keep a list, as memory is often faulty. I like to keep a list in the "notes" section of my cellphone - I always have it with me and just check the list while I am talking to my doc.

If you have had dry eyes and/or mouth, they should also check for Sjogren's (pronounced SHOW-grenz), which is an autoimmune disease closely related to Lupus. Autoimmune diseases often run in groups, sadly.

Don't be too freaked out - just keep at it with your docs. Sometimes the diagnosis is the hardest part, and once they know what's going on and you get some treatment, you feel better.

Best of luck to you, and keep us posted!!!!

tgal
04-11-2012, 05:44 PM
Don't freak out or get happy of the ANA comes back negative. It is NOT a test for lupus and they will often go back and forth. It doesn't change anything about the disease. Sorry

lynday
04-11-2012, 05:47 PM
ty so much...every little bit helps me understand that this is not in my head. that the feelings i am feeling are real. Like i have mentioned before my prayers are wilth all that suffer.
lynday

tgal
04-11-2012, 06:00 PM
ty so much...every little bit helps me understand that this is not in my head. that the feelings i am feeling are real. Like i have mentioned before my prayers are wilth all that suffer.
lynday

Lynday, remember this as well. Having Lupus or most AI diseases is not a death sentence and there are medicines that can help most people. Some people go into an almost remission like place where they hardly feel bad at all. I know it is scary but we will be here as you travel this road. You are now a part of our WHL family and always will be.

lynday
04-11-2012, 06:59 PM
ty for ur kindness as i will keep everyone posted...and please make each day a healthy day for your selves and loved ones...

magistramarla
04-11-2012, 08:39 PM
Hi Lynday,
Welcome to WHL. Sleepy already mentioned what I was going to say. Dry eyes and mouth can indicate Sjogren's. Many of us here have overlapping AI diseases. Mine is called Mixed Connective Tissue Disease - an overlap of Sjogren's, Lupus, RA and Psoriatic Arthritis.
Your doc might mention MCTD of even Undifferentiated Connective Tissue Disease, which would mean that he suspects some overlapping diseases, but he hasn't pinpointed them yet.
Keep reading through the threads here and learn as much as you can. We'll all try to help when you have questions.
Hugs,
Marla

lynday
04-12-2012, 05:46 AM
hello Maria,
Ty for ur post. I have a few more questions if you do not mind. I was told I have mctd or umctd. of course i looked it up on line and was confused as to what this was. It's my understanding that this dissease is basically an unknown diagonse. the dr's do not really know what i have? they cant say for sure lupus because maybe i do not have all the symptoms and they are unsure? so hey just put together a bunch of symptoms and diognosed me with this. But what if it is not this and it is lupus? I'm not being treated for anything at the moment. I was not happy with my dr. so i am now going to my third dr. Also why is it when i'm working out i feel as if i might pass out. In my bloodwork it said that my b12 was a smidge off. So i thought taking b12 shots would help but i'm not feeling any better. With my eyes. I do have tears when i cry but my eyes usually feel dry lke sand paper. My mouth feels dry only sometimes not all the time but enough to raise concerns. But like i said before i do not have the hair loss the rash or chest pains. a little swelling sometimes in my fingers and toes and all the other symptoms i mentioned before. I know i just made your head spin as my head has been spinning for months. I should also mention that i have been diognosed with menears disease. Now the dr. told me it could not be menear disease, that all this could be realted to lupus or mctd. I also mentioned that my RNP was very high...3.7 but my DS-DNA was negitive. do you need to have a postive DS-DNA to determine if you have lupus? my ds-dna was .9 I have no idea what is a high number or low number. Maybe you can help me out.
Than you so much,
LynDay

ritzbit2
04-12-2012, 06:32 AM
About the problem with your food coming back up, do you have acid reflex? I didn't even know what acid reflex felt like I just kept feeling so sick to my stomach and had this weird feeling in my throat and was waking up out of nowhere in the middle of the night and I found out that I had stomach acid coming up causing all of those problems. Prilosec really helped with that for me maybe you could ask your doctor if that might be whats causing your problems. With MCTD its not that they don't know what you have, its that there is enough evidence symptoms ect. to say that there are MULTIPLE diseases. That sounds insance and freaky but its truely not. For most of these diseases the treatment is fairly similar. If you had lupus or MCTD you would be on a handful of the same medications, and there could be others depending on what overlap diseases you have. Like with Sjogrens you would probably have to use eye drops of mouth wash if it was getting bad to protect your eyes and mouth. A positive ds-DNA is not needed for a lupus diagnosis. It can help if other tests are negative along with symptoms, but it alone is not a diagnostic tool. The hair loss and rash and chest pains are not symptoms everyone has. And even people who do have them, can experience them in different ways.

lynday
04-12-2012, 10:27 AM
ty so much i feel as if i have had more support and answers to my questions then the dr's have provided. I feel as if some of u should be in the medical feild. i do have more questions but i feel as if i'm exhusting everyone. i'm just a bit nervous. i know that lupus is not deadly and with the right meds can be controled. That to me is the best news ever!!!!! I just want to be able to be healthy and get some answers. Like most of you i can not believe all this is happening i felt like i was going to be laughed at by my dr when i told her all my symptoms. I thought she was going to tell me it's all in my head. I clearly know now that my symptoms are real and that my blood work does tell a story with in its self. IAs i'm typing thisi have pins and needles in my right fingers and my toes are so cold i feel as if i just went into the cold without shoes. This stays with me all day. My skin is pulsing and of course i'm tired.
Ty for all your help. If u ever need support i am here as well. Although i am new and still learning i still have a lot of compassion and care deeply :)
LynDay

tripLexie
04-12-2012, 11:48 AM
Lynday,

There are no tests that confirm the dx of Lupus or MCTD. There are tests to help SUPPORT dx's, but one test does not give confirmation to one disease. It's a very complicated thing. I was in your same shoes about 2 months ago. I will tell you the anxiety subsides and you will begin to feel better that you are starting to treat your symptoms. That's the thing- all the AI diseases are mostly treated the same. I know the name of the disease gives yourself validity to the pain you have, but treating the sypmtoms is all that will matter in the end.

My advice to you is to NOT overfill your brain with info from the internet. Stay connected on here, rather than google, and you will have the support your looking for. It can be overwhelming filling your head with so much information at once.

We are here for you!!

lynday
04-12-2012, 12:13 PM
ty triplexie your support is greatly appreciated

magistramarla
04-12-2012, 01:55 PM
Hi Lynday,
You sound so much like me! My first dx was Meniere's disease, long before anything else was suspected. Once I was seen by a really good rheumy and had the MCTD dx, she also mentioned Autoimmune Inner Ear Disease. Here's a good site: http://www.cidpusa.org/A/ear.htm It makes sense to me!

The first rheumy that I saw had a "wait and see" attitude. He told me that I had "elevated numbers" on several things, mostly for Sjogren's, but that nothing was "high" enough to need to be treated yet. My PCP wasn't happy with that, so she sent me to another rheumy. That one also said that I tested "mildly positive" for several AI diseases, but she called it MCTD. Here's an excellent site for MCTD: http://www.medicinenet.com/script/main/art.asp?articlekey=16955 She said that it was obvious that I was in need of treatment, since when you add up all of those "mild positives", it meant a LOT of pain for me. She started me on Plaquenil right away, and had just added in MTX when we had to move to another state.
Now I'm back to another "wait and see" rheumy who seems reluctant to even renew my prescriptions - sigh!

I learned a lot about Sjogren's after moving to Ca. I happened to get the chance to attend a Sjogren's Conference in San Francisco. Here's the site for their foundation: http://www.sjogrens.org/ I learned that SJS is a very close relative of Lupus, and can affect many organs besides eyes and mouths.
Go see your ophthalmologist and ask about a Schirmer's test for dryness. Mine seems to be more aware of SJS symptoms than my rheumy. He has me using Restasis for the dry eyes.

Dry mouth can be affecting your teeth for a long time before you ever realize it. Throughout my life, dentists have lectured me about proper dental hygiene, when I knew that I was doing it right. My dentist said "Aha" when I mentioned SJS. Dry mouth can cause you to lose enzymes in your mouth, which leads to losing enamel, which leads to lots of cavities and teeth that are brittle and break.

I was also lucky to get to participate in a Sjogren's study at UCSF. Through that, I got a thorough exam, a lip biopsy and a prescription for Pilocarpine to help with producing more saliva, which my rheumy hadn't considered necessary. I should be hearing from them soon to go to a two year follow-up. They are great about giving me copies of everything that they test for, so I'm collecting it all to take to my great rheumy when we go back to San Antonio.

BTW, I'm a military wife, and we're in Ca for three years while my hubby gets his PHD at the Naval Postgraduate School, then we'll go back to Lackland AFB.
This is a lot of information for you at once, but I hope that it helps you for asking the right questions when you see your doc.
Hugs,
Marla

lynday
04-12-2012, 04:56 PM
Marla,

Thank you so much for all this useful info. I have a long running list and will be asking my dr. alot of questions. It seems that you have been through the ringer. I am truly sympathtic to u. You really seem to know alot about MCTD, Sjogren's and Lupus. It seems to me that i have a long road ahead of me. I hope to get some answers soon. In the mean time i will be using the sights that u gave me to educate me more. I hope one day I can help u the way u are helping me.
Thank you again,
Hugs,
LynDay