Author Topic: New member, but still confused, is Sjogrens or SLE or both.  (Read 4650 times)

blacksox66

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New member, but still confused, is Sjogrens or SLE or both.
« on: April 15, 2010, 11:48:00 AM »
Hi All,
I was diagnosed with DLE in 2000,
But for last 6 years my symptoms have really changed,
In Dec 2005, i was tested for SLE,
ANA pattern speckled, titre1/320
ENA, Sjogrens Syndrome A Antigen high positive,
This patient has autoantibodies to SS-A/Ro.

Dec 2007, i was again tested,
ANA pattern speckled Nucleolar, titre 1/640
ENA, Sjogrens Syndrome A/Ro 60 Antigen high positive,
This patient has autoantibodies to SS-A/Ro 60.

I am still waiting to recieve the more recent one's done in April 2009,

Does this mean i have Sjogrens.
To this day, with all the Dr's i have seen, not one of them has mentioned Sjogrens, i only found this out after i asked for copies.
I went to see my Family Dr yesterday and asked about the Titre value of the more recent tests 1/320, he the said "i have anti bodies to A/Ro 60 which means Sjogrens", that was it he said no more, so he did'nt actually confirm it, but implied it.
Of course i was so thrown with this comment, i could'nt ask any more questions.

I know i don't have SLE, but i do Have Discoid Lupus, but i can understand now why i have felt so ill for the last 6 years, i have all the signs and symptoms of Sjogrens.

Also the dry eyes and mouth, when first starts can it come and go, cos that's now i am at the moment.
I have allergies as well, so i always thought that it was that.

Many thanks for any help with this matter.
Blacksox66





« Last Edit: April 17, 2010, 10:06:41 AM by blacksox66 »

Scottietottie

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Re: New member, but still confused.
« Reply #1 on: April 15, 2010, 06:49:57 PM »
Hi Blacksox  :)

Welcome to Sjogren's world.

I'm not very good on reading test results but I know that lupus and Sjogren's can overlap. I have lupus bloodwork but all my symptoms are Sjogren's so I've been dxd with a lupus/Sjogren's overlap. Treatment is pretty well the same for both anyway.

Someone with better knowledge of bloodtest results will prolly be along shortly.

Take care - Scottie  :)
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blacksox66

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Re: New member, but still confused.
« Reply #2 on: April 15, 2010, 07:15:55 PM »
Thanks Scottie.

Linda196

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Re: New member, but still confused.
« Reply #3 on: April 15, 2010, 07:18:37 PM »
Hello and welcome, Blacksox.

The autoantibodies can be really confusing and misleading, since they can overlap diseases, and often it comes down to identifying the symptoms that suit one disease over another, when the antibodies can be present in more than one.

The ANA is the least specific, and can be positive in DLE, SLE, Sjogren's and most of the autoimmune diseases, with the exceptions of Wegner's granulamatosis and Celiac. The speckled pattern does lean toward SjS, but can appear in other diseases.

The anit-SSA (Ro) is fairly indicative of SjS, but can also occur in SLE and Rheumatoid Arthritis. These autoantibodies don't often appear positive in DLE, but the other SLE specifics like anti-dsDNA or anti-Sm (Smith) can also occur in DLE.

At this point, it would be in your best interests to find a rheumy or immunologist who will treat aggressively first and worry about the specific diagnosis later, in other words, a doctor who doesn't shrug SjS off as a nuisance disease, if that's what is eventually diagnosed.
« Last Edit: April 15, 2010, 07:21:58 PM by Linda196 »
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blacksox66

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Re: New member, but still confused.
« Reply #4 on: April 15, 2010, 07:37:07 PM »
Hi,
Thank you, This has been a very differcult 6 years for me, not one of the dr'S i've seen or my family Dr have ever mentioned Sjogrens.
That was why for the longest time i thought i had Sle, because of my symptoms but looking at Sjogrens the symptoms are very much the same as SLE.
But not to be told that Sjogrens was a possibility.
The Rheumie that i saw last year told me that if my tests were negative she would not see me again, and it has been a year since then and guess what she has'nt even sent any info to my Dr either. And reading things that i should have Rheumie, that i could see on a regular basis.
My Dr is sending me to the cronic pain clinic, so i'm hoping that they can give me answers to what is going on and help me find a diagnosis.
Thanks again.

navydad

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Re: New member, but still confused.
« Reply #5 on: April 16, 2010, 08:53:13 AM »
seems to me if you show the antibodies,, that would be the smoking gun for sjogrens,, but of course I never spent a day in med school,, I jsut dont understand why they dont treat symptoms,, andnow send you to a pain clinic,, I went that route,, had one shot in my spine,, told them never again,, taked about a tens unit,, I refuse to spend another minute hooked up to a machine,, and how can I get tehre,, I cant drive anymore,,, so Inow how and what your going through,,, get another rheummy

blacksox66

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Re: New member, but still confused.
« Reply #6 on: April 16, 2010, 09:56:33 AM »
Hi Navyman,
Another reason they are sending me to the pain clinic is that work aggrivates the pain especially in my hands, arms and neck, also my feet, knees and hips. i have had to give up my part time job, cos the dr signed me off work with out putting a return date on, and work needs a return date to keep my job open for me, i'm still wait for the appointment from the clinic, but have foundout he's on holidays til june and not seeing anyone til then, so it may not be until June, July or August who knows.
We don't have a Rheumie here in our city we have to drive 4 hours, and i have a phobia about traveling so that is a horrible for me, and i don't drive either.
I have also heard that the pain clinic deals with the pain, but does'nt find the cause, well i'm sorry i have to find the cause because in a strange way i would be able to cope more with it if i know what i have.
Thanks.

YYC_ Mommy

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Re: New member, but still confused.
« Reply #7 on: April 16, 2010, 11:17:47 AM »
Gosh, I have no help with your blood tests but I wanted send a big WELCOME your way!

blacksox66

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Re: New member, but still confused.
« Reply #8 on: April 16, 2010, 11:22:41 AM »
Thanks everyone.

navydad

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Re: New member, but still confused.
« Reply #9 on: April 16, 2010, 11:56:31 AM »
Hi Navyman,
Another reason they are sending me to the pain clinic is that work aggrivates the pain especially in my hands, arms and neck, also my feet, knees and hips. i have had to give up my part time job, cos the dr signed me off work with out putting a return date on, and work needs a return date to keep my job open for me, i'm still wait for the appointment from the clinic, but have foundout he's on holidays til june and not seeing anyone til then, so it may not be until June, July or August who knows.
We don't have a Rheumie here in our city we have to drive 4 hours, and i have a phobia about traveling so that is a horrible for me, and i don't drive either.
I have also heard that the pain clinic deals with the pain, but does'nt find the cause, well i'm sorry i have to find the cause because in a strange way i would be able to cope more with it if i know what i have.
Thanks.
I;m the same way to,,, I want to know the cause and why its getting worse,, I had neuros tell me while I  was in the hospital,, look, your going to get more burning and more burning till the nerves burn out and your left numb,, so thats it?,, we just give up looking for a root cause?,

blacksox66

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Re: New member, but still confused.
« Reply #10 on: April 16, 2010, 12:13:06 PM »
That's disgusting, don't they understand that it's the not knowing that does our heads in, i have always said that once you know what it is you can cope with it.
Don't give up on finding what is going on with you.
Thanks.