Autoimmune Diseases are so Complicated - uggghhh

[becky]

I really thought I had this all figured out.  I found out yesterday that I don't have a clue about what is happening to me.  I thought I did not have Lupus, rather I have Primary Sjogrens.  Not necessarily so.   The Doctor explained that:

There are many false positives and negatives in autoimmune diseases.  In my case I have a strongly positive ANA, 1:1280 and there is definitely something autoimmune going on.  However, since all my other tests are negative at this time, they cannot diagnose or rule out Lupus yet.  He has diagnosed "Probable Sjogrens" because I have more symptoms of Sjogrens than Lupus, even though I also tested negative for Sjogrens.  He said that could change at any time. 

Color me very disappointed because I thought Lupus was off the table and my Doc told me it's not.

So - live and learn.

[irish]

If there is anything we can be sure of it is that we are never for sure about what we are going to be experiencing the next day. We can get so mad at the docs (and some of them are not very good) but they do try. Sounds like you have a doc with a head on his shoulder.

AID are the pits and it doesn't pay to get too hung up on diagnoses. It is always nice to know what we have but the symptoms need to be treated most of all. Sjogrens and Lupus are kissing cousins as far as diseases go and they just may be the same disease---at least that is what some people are thinking.

When we get diagnosed with one autoimmune disease there is always a high possibility that we can get another. I have 5 autoimmune diseases that I have been diagnosed with. They all have so many symptoms that can overlap that itis hard to tell which one is coming and which one is going.

Do not lose hope of faith in the process. Be thakful for a doctor who seems to care. We have to grab hold of all the possitive things we can. Also, there are other diseases that are also very complicated and many that are a lot more invasive. Soometimes I have to remind myself to be thankful for the diseases I have cause it could be a whole lot worse. Irish

[becky]

Thanks Irish.  Yes, treating the sysmptoms is the same no matter which AID you have.  I've learned that much for sure.  My main issuse at the moment is my dryness problem.  Eyes, nose, throat and mouth.  I'm experimenting with mouthwashes and eye drops and I've found some good tips on this site. 

I am thankful I have two good Doctors.  My family Doctor, Dr. Wheatley and my Rheumatologist Dr. Kenny Sizemore of Knoxville.

[ohiolady]

Becky,

I don't see Evoxac listed as one of your meds.  I and a lot of others take it for mouth dryness.  It helps most of us quite a bit and you may want to give it a try.

Take care.

Anna

[Aquarius]

Becky, I am about the same.   ANA 1:1280, all other autoimmune tests negative   My doctor said he thought I had sjogrens and another said lupus before the sjogrens kicked in.  I didn't push for a firm diagnosis on paper.  My syster has lupus.  My late mother and sister had severe rheumatoid arthritis.

[Joe S.]

AI diseases are not that complicated. You see these little bacteria to, avoid death, loose their out cell wall (L-form bacteria). In this disguise they pass through your cells walls and use mitochondria DNA of gene 6 and gene 7 to replicate. When this happens your immune system goes bonkers and attacks the damaged cells in your body. One type of L-form uses gene 7 and another form use gene 6. I have always heard that it takes two to tango. Any two of 16 that humans are susceptible to. If jou know your binary counting you can get 64 AI diseases. Once these little buggers reproduce they leave the cell and become parasites to other cells.

Okay to most members this is a story. To me this explains what is happening and why the medical community can not find the cause...They do not see the Big Blue Wale in the room.

For more history on this theory Popular mechanics "New Bio Weapon form China"1963 (?), Popular Science, "The Cell from heck", Discover "The insanity virus" 2010.

[Kerrikins]

My rheum always tells me that the thing about sjogren's is, many people with it go on to develop other AI diseases like lupus and RA, so he's always on the lookout.  It stinks but sjs is almost like the mother of all AI fortunately the medicines are the same so we probably aren't going to develop anything for lack of being treated, at least!

Kerrikins

[gurs]

My rheumy said Lupus and SS almost the same..sisters...I think for the dryness aspect, that is really the only difference?
I wouldnt worry about diagnoses. The treatments are the same anyways for both pretty much? I have SS with a lupus overlap as they call it.
Alot of lupus features, but not exact..I def know I have SS thank god!! since I was 13 years old if not sooner, plus my always high
SSA-SSB.

hang in there!

Gursie

[Nancy60]

Don't get too hung up on a diagnosis as long as you are getting effective treatment. 

I am like you , 8 years ago had positive ANA 1:1280, a few other positives, but not the specific Lupus or Sjogren's antibody tests, got diagnosed with a + lip biopsy in 2004 and later SSA came back positive. 

4 months ago my DS-DNA was positive for the first time, my Rheumy just re-ran the test with a lab that is more sensitive, I may be getting a Lupus diagnosis now, I don't know.  The important thing is that you are getting appropriate treatment.  For me, now that other antibody tests are coming up positive, I just want to make sure the Plaquenil is enough to keep things under control.  I am not sure if more positive antibodies mean I am not being well controlled or not, something to talk with my doctor about.

Possible Lupus is something that will hang with you for a long time.  Don't let it rule your life though!

Nancy

[Sooki]

Joe S:  There's a book by Paul Ewald, called Plague Time (not about plagues), which discusses reasons for chronic diseases having infectious causes, from a microbial ecologist's point of view.  You might find it interesting.

[Joe S.]

Thank you sooki I will try to remember to check out the book "Plague Time".

[Judy]

 I am confused also. I was just diagnosed in july with ss. My rheumy dr. didn't put me on any meds because I didn't/ don't have any swollen joints. But man I have pain! And fatigue so bad I can hardly move. I've only seen this doctor twice but seems like she was just so unconcerned.

[Joe S.]

Welcome Judy. This site is just full of information on Sjogren's and related ailments. There are a lot of supplements that you may consider taking like D3, B12, C, R-lipoic acid and Acetyl L carnitine. Black cherries help with pain in your joints. I like a 6-8oz glass of carrot juice every day to help with pain. You can look up Reflexology and Reiki to help with pain also.

[becky]

Very interesting posts.  I'm definitely going to check out the books.  I have an appointment with my Dentist next month and I'm going to ask about the Evoxac.  I have heard that it can cause a sweating problem - which I have trouble with anyway so I'm reluctant to try it.  Has anyone else had problems with it?

Thanks everyone.

[Meld256]

Becky,

Yes, all these diseases are complicated, and the ways to diagnose seem to be, too.  I know it's hard, but possibly the idea of mainly being concerned about treatment of your symptoms may be most important.
I hope your dentist appt. goes well.  Please keep us updated.
Melinda