Author Topic: Help - new to Sjogren?s  (Read 499 times)

pianogirl85

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Help - new to Sjogren?s
« on: October 05, 2018, 05:53:04 PM »
Hello,
I am a 33 year old female that was diagnosed with Sjogren?s on an incidental lab finding.  I have been having horrendous headaches that take my vision away lately, so my neurologist did a full blood panel, including an autoimmune test.  The test came back with an ANA Titer 1:160 and SSA of 5.4 AI.  My neurologist told me I have Sjogren?s and should see a rheumatologist about it.  After reading about it, some of the symptoms make sense.  I?ve been told at my last two eye appointments that I have very dry eyes and should be using drops.  But other than that, I don?t really notice a lot of symptoms.  Is it possible that I?m not really positive for Sjogren?s?  I don?t know that much about bloodwork, but I was reading some of the posts and it seems like my results were relatively low.  Any help would be appreciated!

Joe S.

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Re: Help - new to Sjogren?s
« Reply #1 on: October 05, 2018, 07:01:10 PM »
Welcome to the forum. It usually takes about 7 to 12 years to get a Dx. Usually a Dx in the past has been arrived at as a process of elimination. Some of us are sero-negative like me. It does not show strongly in our blood work. So, I was diagnosed on symptoms. I thought that these symptoms were what everyone experienced as most of my dads family did. Dry eyes, nose, mouth, skin, and bottom gave me a diagnosis.

Management is the key to doing well inspite of Sjogren's. You will go through the grief process when it is confirmed. That is normal. There are techniques that you can learn to manage your symptoms.
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happylife

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Re: Help - new to Sjogren?s
« Reply #2 on: October 05, 2018, 08:13:30 PM »
Sorry to hear that.

Just ssa and ana positive does not prove sjogren.

Test the following and post your scores

1. Schirmer score
2. Ocular stain score
3. Rps inflammadry score
4. If you have dry mouth, do unstimulated whole salivary flow test at home at 7am and 11am

This will help us to get closer to rule in or rule out.

Happylife

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Re: Help - new to Sjogren?s
« Reply #3 on: October 06, 2018, 02:29:32 AM »
For many people SJS symptoms are primarily dry eyes and mouth so you are not unusual.  You should see a rheumatologist so you can begin treatment that will help with the dryness at a minimum.   The issues with eye dryness are it can cause corneal abrasions over time and with mouth dryness your teeth can be quite negatively impacted.   If you are planning on having children you are better off knowing and being followed by the medical professionals than not.   There are books in the library you can read and the Sjogrens Foundation has a good website.

You may very well never have more severe symptoms and that would be wonderful but you are young and have many many years to enjoy.  Best to be conservative.
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irish

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Re: Help - new to Sjogren?s
« Reply #4 on: October 07, 2018, 08:40:13 PM »
If you have positive blood work and the dry eyes and headaches you probably do have the Sjogrens. Seeing an ophthalmologist and treating the eyes will probably make life better for you. A person can have a very few symptoms and that is good. You may not develop more issues and then as the years go by more things could crop up.The main thing is you have the blood work and diagnosis and treating the symptoms and keeping comfortable is the goal.

Accepting your diagnosis and living life to the fullest is your goal. Do not worry about the future as stress is not good for any of us and worry can precipitate symptoms or flares as they are called. I am 75 and have had symptoms since age 21 but no diagnosis until age 60 years.  Basically just living life and taking things as they come is the best we can all do. You might want to keep a doctor on hand for the Sjogrens to visit as needed. You may just want to keep in touch once a year when under control. Taking blood work all the time won't prove a whole lot now. Taking it every so often is ok but it costs money.

A person can convert to negative blood work but they still have Sjogrens after the positive diagnosis. THe body is fickle and the blood work will go back and forth. Many times one can have higher blood work but not have any increase in symptoms. Then one can be negative at times and have more symptoms. Nothing is cut in stone with Sjogrens or any other autoimmune disease. Take care and good luck. Irish

pianogirl85

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Re: Help - new to Sjogren?s
« Reply #5 on: October 29, 2018, 12:48:24 PM »
Thank you to all who replied!  Irish, thank you for letting me know that you can go negative on the bloodwork.  Just to update:
I had my appointment with a rheumatologist and he basically didn?t know why I was there.  He said I had mildly dry eyes and mouth, but nothing severe.  No overwhelming joint pain, so he didn?t think I even have Sjogren?s.  He said it wasn?t necessary to see me again unless I wanted to, but I felt like he pretty much dismissed me as a kook, so I don?t think I really want to go back anyway.  How about that?  ???  He drew more lab work and the ANA came back negative this time, but the SSA had risen.  There were a couple of abnormalities with my IgG and T3 uptake, but he wasn?t concerned about them.  I guess I?ll just watch and wait then.  I felt very stupid for going in, even though I was told to do so.  Why do doctors make you feel like that?  Anyway, just venting a little.  Thank you to everyone that took the time to respond.  I will continue to hang around the boards.  Hopefully will never have to deal with Sjogren?s clinically!

Carolina

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Re: Help - new to Sjogren?s
« Reply #6 on: October 30, 2018, 07:14:30 AM »
Dear pianogirl85,

OK, my two cents.

You are not very stupid for going to the Rheumatologist.  The Rheumatologist who saw you sounds 'less than ideal' (to be kind to him, which I'm not usually!).  Next time you might find another Rheumatologist.  We have to 'kiss a lot of frogs' to find the prince/princess Rheumatologist.

1.  You can have Sjogren's with no dryness.  Yes that is possible.

2.  Sjogren's can present in many ways, and the bloodwork may vary from time to time.  A lot depends upon the lab evaluating the bloodwork, for example.

3.  The majority of those diagnosed with Sjogren's have no progression from dryness, which can be treated.

4.  Those who post here are among those who do have progression, which is why we need more support.

5.  We are HERE FOR YOU.  Post as often as you need, ask the questions you have.

6.  You can take a break from posting, and return at any time.

Please do NOT feel stupid, please know that Immune Disorders, like Sjogren's, are often confusing, with varied symptoms and varied ways to treat the symptoms.

We are different from 'ordinary people' and we are different from each other, as well. 

Please keep us posted.

Regards, Elaine
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irish

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Re: Help - new to Sjogren?s
« Reply #7 on: October 30, 2018, 09:13:24 PM »
Yes, As Caroline says we do have to kiss s lot of frogs......and I sure did that plus I made a couple enemies also. I wanted to tell you that there are some rheumatologists that don't like to get too involved in the Sjogrens for some reason. They like to treat the Rheumatoid arthritis, which has more visible symptoms to my way of thinking.


If you can find an immunologist you would probably get some more answers as they can deal with the autoimmune issues plus the immune issues or allergies should there be any. The IgG levels are significant for Immune issues and immunologists would probably pursue that given your one elevation. Also, the changes in your thyroid are significant as hypothyroid disease and Hashimoto, which is autoimmune thyroid disease, is common with Sjogrens.


It is posssible that your rheumy did not want to get involved in a fishing expedition. With these autoimmune diseases it takes the right kind of doctor with the ability to search for knowledge and apply it to the patient. Many docs don't want to expend the energy. Any time you search for a doctor try calling the clinic, etc. and try to talk with the nurse manager ad ask questions. One question of importance is if there are any doctors that deal with autoimmune diseases. This may help weed out the ones who will disappoint you. Good luck in your qwest and keep us updated. Irish

trejonina

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Re: Help - new to Sjogren?s
« Reply #8 on: October 31, 2018, 11:24:04 AM »
Hello, I too am getting headaches almost daily, from or with severe photophobia. This is my newest malaise,didn't have it before.I just turned 65 yrs. It can be disabling.

irish

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Re: Help - new to Sjogren?s
« Reply #9 on: October 31, 2018, 12:23:01 PM »
Have you told your doctor about these headaches and had them checked out??? Just wondering cause they could be totally unrelated to autoimmune and need investigating. Just a thought. Good luck. Irish