New to EVERYTHING!

[quilt4fun]

       I've also been dx'ed by rheumatologist with UCTD and Sjogren's.   Then he explained that UCTD is just a  catch-all phrase that says they don't really know what else to call the swelling/pain/rash on my arms, chest, neck, or what causes it

[Meld256]

mrosed,

You may hear from others here diagnosed with either UCTD or MCTD.  It seems that the general public and sometimes doctors (just as quilt4fun stated) say that UCTD is a catch-all phrase.  From what I've learned that doesn't seem to be the case; perhaps that may give you some validation.

UCTD is a real diagnosis, and means that there may be an overlap of several syndromes, but none are prevalent enough or pronounced enough to say it is one or the other.

MCTD or mixed connective tissue disease is also a valid diagnosis, but a mixture of several syndromes they can specify.
Someone in the medical field may correct me or clarify.  The important part if if we are treated for our health issues so we can have a better quality of life.

Take care,
Melinda

[eyeamdry]

Eye2Dry: Having to give up contacts is a fear of mine. My visions not too bad, but I'm not one who looks cute or cool in glasses!   Do you know if people with SS often have Lasik Eye Surgery -- or if it's even an option???

[/b]

If you have dry eyes and/or autoimmune disease, do NOT HAVE LASIK OR OTHER REFRACTIVE SURGERY.  It's late tonight and I'm not going into detail, but I've lost much of my vision from Lasik surgery.  If you want a more detailed answer PM me and I'll write it up on the board for you and anyone else who wants to read it. 

Doctors do not care about you, if you have the money for Lasik, you are a GOOD candidate.  Do not believe them.  I've spent over $25,000 over the last 12 years trying to find a fix for my eyes and there isn't one.  Lucy

[mrosed]

Hello,

Thank you everyone for your responses. I know that that UCTD is a real diagnosis, but it's still difficult for me not to have a name of what is going on. I guess what really scares me is the thought of having various symptoms that result in a diagnosis of UCTD that will ultimately result in a diagnosis of a Mixed Connective Tissue Disease, meaning that I have more than one disease.

I had a Salivary Gland Scan this morning and I see my Rheum again on Monday, so hopefully the scan and additional blood work will provide more answers.

Does anyone know the "normal" range for DNA Antibodies? I know that test ranges are different and usually depend on the lab but for some reason there is no range next to my result. My ANA is positive and for the DNA Antibody it just says 17IU/mL. I know my doctor re-tested me to get a new titre for my ANA results, but it is driving me crazy not knowing what these results mean and I can't find a range anywhere.

Thanks again and hope all is well!

[MissyLouWho?]

Every lab has their own "normal" when it comes to the ANA titer.  I'm in the US and where I am we use Lab Corp and Quest Diagnostics.  Each one has different ranges.  According to Lab Corp, my ANA is very positive, but to Quest I am barely positive at 160.  My range actually went down with my last blood test and I was concerned (more like curious) as to why, but apparently they can fluctuate some.  I think just the presence of ANA shows something might be brewing, but healthy people can have positive ANA too.  It's all so very confusing!!!

[mrosed]

Thanks MissLouWho?

My blood work was done by Quest, but no range was provided. My Rheum re-did all of my blood work because of this, but my own curiosity is killing me. I've found so many different reference ranges so I'm not sure what to think at this point.

Thanks though!

[MissyLouWho?]

Another brain fog moment!!!   My range is USUALLY 160, but went DOWN to 40 when Quest processed this round of blood work.  Quest's reference range is anything less than 40 is negative, 40-80 is low antibody level, and anything above 80 is elevated antibody level.  That's for the titer. 
Then you have what pattern it is.  Mine is homogeneous.  That is usually indicative of lupus, which I also have.  Speckled is usually shown in Sjogrens patients, but since the autoimmune diseases tend to overlap, I am not sure what makes one person have a speckled versus a homogeneous versus another pattern...

[mrosed]

It would be too convenient for everyone to have standard numbers, right? 

My ANA titer didn't show up with a number at all. Al it reads is positive, that's why my Rheum did additional blood work. I'm assuming though that my results showed whatever pattern is common in Lupus since they ran an additional Anti-DNA (DS) Antibody test as well. This is the test that came back with the 17 iu/mL number with a specific range. I guess I will just have to be patient at wait to find out. Hopefully my Salivary Scan test results are ready by Monday as well.

Thank you so much for your responses!

[violet]

Hello!

I've also been diagnosed with UCTD and have learned a fair amount about that diagnosis in the year that I've had it, so if you have any questions - fire away! In practical terms it seems to mean that your rheumatologist believes that you definitely do have a connective tissue disease, but you don't meet the full criteria for diagnosing any one of the specific diseases. UCTD may sound vague and wishy-washy, but it is a real diagnosis. Rheumatologists do tend to think of it as being the mildest of the CTD's and often don't treat it as aggressively as they would if it were well-defined lupus or scleroderma or MCTD, for instance.

I've had symptoms for 2 years and was diagnosed with UCTD a year ago. My first rheumatologist retired and I was assigned a replacement and she didn't think I had a CTD at all - she was stuck on the fact that most of my symptoms are neurological and said that the CTD's don't cause neuropathy or all of the aches and pains I'd be having. She wanted me to be treated primarily by a neurologist instead and revoked my UCTD diagnosis and called it fibromyalgia instead. The neurologist thought I should be primarily treated by a rheumatologist, so I was kind of stuck. I asked for a second opinion and ended up with a new rheumatologist who said that I definitely had UCTD. She thought the symptoms were heading towards scleroderma/Sjogren's, but that it was possible that I'd never have either full-blown disease. She didn't confirm or revoke the fibromyalgia diagnosis, but I guess it doesn't much matter where the symptoms are coming from as long as they are appropriately treated (which they aren't, yet).

Apparently if you make it through 5 years of having UCTD symptoms without it differentiating into a specific disease, then it probably never will.

My Raynaud's is quite bad in my feet and not nearly as bad in my hands. I tried Amlodipine without success last year, but I had to be on a very low dose because my BP is naturally low and even 5 mg made dizzy and tired all the time. That was too low to control the Raynaud's though. I will probably try a new medication in the fall when the weather gets cooler again. I also have peripheral neuropathy, atypical migraines, aching muscles and joints like the flu, dry eyes and sinuses, stiffness, erythromelalgia, etc. I'm 30 years old and I have 3 children - my symptoms started up during my last pregnancy when I was 28.

I just had a lip biopsy done as I am sero-negative (for all antibodies except for the non-specific ANA which is very high at 1:640 speckled). I'm going to try to call for results tomorrow. I would love to have a firm diagnosis of Sjogren's actually.

Anyway, just wanted to share my experience in case it's helpful to you.

Violet

[eyeamdry]

Everyone who cares re: remarks about Lasik surgery and saying a surgeon should have his license taken away if they operate on a person with autoimmune--was probably me.  I go on rants scattered through this board.  I know what I'm talking about.  Giving up work.  Losing several lines of vision.  Straight to the dry eyes overnight.  This was 7 years before my Sjogrens diagnosis.  But, the dr never tested me for dry eyes and if he had, I might have escaped this mistake.

I know that sometimes we have to give up wearing contacts to back to glasses after the dry eye hits.  No one wants to do that. Possibly if you can nurse your eyes back to half-way decent health, you'll be able to wear contacts part-time.  If you have what I'm left with, you won't be a lens candidate.  I wear glasses but they really don't help.  They help keep the wind out. lol.  Lucy