Hi from Vegas!

[Amber]

Good morning!

My name is amber. I am 24 years old, and I was diagnosed with Sjogrens and fibromyalgia last week. In addition to those, I also have a rare autoimmune disease of my eye called Punctate Inner Choroidopathy.

I have a great Rhumatologist, who is working with my retina specialists and I will be starting cellcept next week. The goal is to stop anymore lesions from forming in my retina, and cause anymore vision loss. I am TERRIFIED. Lol. I feel like a big baby. Before last week I had never heard of Sjogrens, and didn't know much of anything about the fibro. It's nice to have some answers FINALLY, after so many years of being told I was fine.

Anyhow, looking forward to getting to know some of you and hopefully gain some insight on everything that's going on with me.

[Pisces24]

Amber it is hard wrapping your mine around any diagnosis. Lots of us go through the 5 stages of grief until we get to acceptance. Once at acceptance, we are are better able to help ourselves. We learn to be advocates for ourselves, we listen to our bodies better and actively look into ways to help ourselves. It does take time though. Just remember you can live with this disease and even enjoy life!

Sounds like you have a great team of drs to help you. That is Great!!! Most of us were shuttled from specialist to "so called" specialist for years until we found one that was intelligent enough to do the work and confident enough to stick their neck out and say you have Sjogrens. I even had myself on emotional hold for about 3 mos due to a "specialist" telling me he was sure it was cancer but I wasn't sick enough but if I had XYZ symptoms to run not walk to the emergency room. 

I have a cousin with fibro. Me I just have the SJS, Hashimoto's and Reynaurd's so far. One thing I don't like about Sjogrens as other stuff can tag alone with it. Just remember that SJS is very individualistic on symptoms. Just because you Can get this symptom doesn't mean you Will. Ok?  So far mine has been mild and I work a full time job w/frequent overtime.

Everyone here is just great and not judgemental at all. You can use the search button and find a lot of info that way. The drs just don't seem to give you much on it and I learn a whole lot more here. After I was diagnosed, I went right to this site.

Oh I have a very rare thing with one of my eyes. It is not a damaging thing and doesn't affect me at all but very very rare. I guess as a child grows up the "synopsis or nerves" back of the eye thin or narrow. We I have one that never did. Since it is so rare my eye dr "after getting my ok" has taken pictures of it to the forums, etc he attends. I do have cataracts in both eyes that will need done in the next few years though.

Welcome to the Group!

[Amber]

Thanks for the warm welcome pieses

I definitely am grieving. I was told that I probably had MS. I had an abnormal nerve conduction study, and weakness and sensation loss on my left side. Based on all of that, the neurologist told me he was pretty positive that we were dealing with MS. Never mind the fact that I had been telling my primary care doctor for over a year that my left side just didn't feel normal, and even my trainer was noticing that it wasn't working properly when I would run/jog or lift weights. He would just tell me that a lot of people are weaker on their left side, and leave it at that. He would run basic tests, tell me I was fine, and send me on my way.

I finally just decided enough was enough. It didn't make sense. I have always been told my symptoms were all stress/anxiety related, and that if I calmed down I would feel better. Well, I have learned to tune out my body screaming at me, and learned to ignore so many symptoms telling myself I was crazy, and that if I just didn't think about things I would be okay. Weird. Didn't work.

So, I just advocated for myself finally. Anxiety wasn't causing lesions in my retina, and I wasn't going to accept that it wa causing everything else. Tons of pain, extreme fatigue, hair loss, muscle weakness, sensation loss, brain fog, did I mention the pain? I haven't been able to tolerate the cold in years, severe asthma that suddenly came about after my pregnancy. I have been through a whole slew of drs that would tell me I was fine because my blood glucose would come back normal. Smh.

So the neuro did the antibodies testing. I came back with a positive crp, Ana, and ss-b. In the middle of these dx's, I have been going through all the issues with my eyes as well. I am lucky that I found a great retina specialist (and my opth was amazing as well. My daughter is 3, and legally disabled because of her vision, so she takes care of my whole family.) I actually had to go drive out to California USC to be diagnosed with my eye disease, because my dr has never actually SEEN it before. It took about a year for an official dx, and finally a treatment plan. It just so happens that all of this has been going on at the same time. I feel SO GOOD to finally know what's going on, and finally have a treatment plan.

[Bucky]

Hi Amber - welcome!   

I'm sorry you had to seek out this site, but glad we're here to help offer some encouragement and information about Sjogren's.

Sjogren's affects each person differently.  Some have very little or minor symptoms and others have more involvement.  Also, many of our members have more than JUST Sjogren's going on - so, it's not always easy to decipher which is caused by Sjogren's or which is caused by other diagnoses.

I'm glad it sounds like you have a good team of doctors working with you.  That's always a huge plus.

Any more, it seems all the doctors are becoming specialized in certain fields and know their particular field, but not other areas of the body.     Unfortunately, it means a lot of frustration to people trying to put the pieces of the puzzle of their health together.  Individually, some of the symptoms mimic so many others - but, put all your symptoms into the same basket and then there is the "Ah Ha" moment where it all begins to make sense.

You'll read many stories here of members being with diagnosed with one thing, only later to have the diagnose changed and you never had xyz to start with.     Extremely frustrating.

As Pisces mentioned, you have to be your own health advocate.  If things in your body don't seem quite right, and doctors are scratching their heads or telling you there's nothing wrong, keep looking.

It must be a scary situation with your eyes.  Our eyes are so precious.  I'm glad you have a doctor who is working with you to treat your eyes.  It's really important that you keep up with your doctor appointments and follow any medical advice they give you.

This new journey on the road Sjogren's will be an adjustment.  Through time, you will learn to adjust things in your life to accommodate it.  Trying to keep your stress level to a minimum will help, as stress and Sjogren's don't mix real well.    Be kind to yourself, pace yourself, and learn all you can about Sjogren's.  With that said, don't let the "stories" you read here from our members scare you - like I mentioned, everyone is different and how Sjogren's affects me, might or might not affect you. 

And above all . . . . . remember to breathe!   

Bucky

[lynnmarie219]

Hi Amber!

Welcome to Sjogrens World! Take all the time you need to read the information here that has been shared by so many people and if you have any questions, feel free to jump right in and ask! Someone is always around to help out!