Author Topic: New to SS  (Read 2683 times)

juleatee

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New to SS
« on: February 15, 2012, 11:04:40 AM »
Hi,

My name is Julie. I'm a single mom to a 14 year old, work full-time, and take care of my elderly parents. I recently received blood work back from my dermatologist who conducted a comprehensive ANA panel (speckled). The ANA came back positive at 1:80. I also tested positive for SS-A IgG autoantibodies, out of range at 64. All other antibodies were negative. I have symtoms that correlate to SS; skin rash, dry skin, dry mouth, cuts/sores on inside of lip, headaches, fatigue, joint pain in fingers and ankles, numbness/nueropathy on big toe, trouble sleeping, and brain fog. I have an appointment with a rheumatologist on Monday and can't wait. I've had lots of these symptoms for awhile, some come and go, but always thought they were just a part of life. What's weird is mom my has all these symtoms and more but was never tested for SS. I'm not scared just curious. I want to know so I can be treated. I will post back on Monday after my appointment.

Thanks to the founder of this site! It has really helped reading other posts and to know I'm not alone.

Julie

Jellyb

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Re: New to SS
« Reply #1 on: February 15, 2012, 11:12:59 AM »
Hi Julie, welcome!
That is so great that your dermatologist did labs, and discovered your sjogrens. Skin issues were my first symptoms of my sjogrens 18 years ago, and I saw six different dermatologists in about 8 years and not one of them drew a single vial of blood on me. Just allergy patch testing.

You found a great place here, everyone is so smart and helpful, its been a godsend for me. I look forward to hearing about your appointment on monday

lea78

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Re: New to SS
« Reply #2 on: February 15, 2012, 12:12:10 PM »
Welcome to the forum, lots of great advice here and it is helping me loads too.

Leanne

juleatee

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Re: New to SS
« Reply #3 on: February 15, 2012, 02:10:43 PM »
Thanks Jellyb and Leanne for responding! I was very happy that my dermatologist did a thorough check-up. I will definitely keep you updated on my rheumatologist appointment.

Have a great evening!  :)

Joe S.

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Re: New to SS
« Reply #4 on: February 15, 2012, 03:30:58 PM »
Welcome, juleatee to the forum. Please bring an advocate with you to see your Rheumy.

While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogren’s – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read “Spoon Theory” on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.

1. Don’t Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book “Feeling Good” by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think “I am” as you breathe out, think “calm”. Repeat as needed. Meditation can be as good as sleep.

With Sjogren’s we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
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Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

eye2dry

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Re: New to SS
« Reply #5 on: February 15, 2012, 05:09:40 PM »
Welcome Juleatee

yes, let us know all the details from your upcoming visit.

eye2dry

soycoffee

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Re: New to SS
« Reply #6 on: February 15, 2012, 07:45:19 PM »
Hi, and welcome to the forum.the

Rheumatology has developed some good helps for Sjögren's Syndrome. The trick is for the patient and the doctor to work out the priorities for putting them into the treatment regimen. Besides the clinical exam part of the visit, it helps to have an idea of what is important to you first. Diagnosis you have; that was my first priority.

Then treatment: available treatments are a varied lot, and some systemic treatments take a while to take effect. If losing your teeth is a major concern, then you would want to focus on effective treatment of dry mouth. If your vision is changing, then mention needing to begin treatment of dry eye ASAP. If the main problem is fatigue, then a longer term course of a systemic treatment is in order.

I think I expected everything at once, without really telling the doctor what I wanted most. Now that I am understanding my treatment priorities better, I know what to ask of my rheumy, and what he can do. Some things you could list:

Review the diagnosis, and your questions about it

Ask: Symptom relief or systemic treatment, which does the rheumy like to tackle first, when the problems are a big global mass to disentangle.
OR
Ask: Is there something you can give me so I don't lose my teeth? or So I can speak or sing in public without going all dry in the mouth? or So my SO and I can have intercourse again, or So my joints don't hurt? and so forth.

Much success,
Soycoffee






Pisces24

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Re: New to SS
« Reply #7 on: February 18, 2012, 05:19:00 AM »
Welcome to the Group.   Though I do not have children, I took care of my elderly parents for many years working full time. I understand the difficulties associated with all that.

Sometimes I think it is a matter the them figuring out WHAT test to run for us. It is weird how the symptoms all vary so my individualistically for us with Sjogrens. My ANA is through the roof (very very high) but I don't have all the symptoms you've listed.

Yes we've really had SJS symptoms for so long but just ignored it or attributed it to something else. Us gals are tough!  8) ;)  I got going to find a diagnosis when my gp got concerned about my rising wacky bloodwork and told me 6-7 sinus infections a year was not normal.

Good Luck with your rheumy. Be sure to take a list of questions, etc with you. So easy to forget when you get there.

Patze

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Re: New to SS
« Reply #8 on: February 18, 2012, 03:30:13 PM »
Hi Juleatee,

Let me also welcome you to the SJS World and family! 

I'm sorry to have to meet you this way, but I'm sure glad that you've found us!

Check out the search engine located in the upper right hand side of this page as it contains tons of topics and scads of information that you just might find interesting.

Again, welcome and I hope that you find the board as warm and inviting as I have all these years later.

Take care of yourself -

Patze
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