New to neurological and psychiatric problems!

[Carolina]

Hello all,

What a great forum.  

I've just stumbled (literally) into the world of Central Nervous System disorders related to Primary Sjogren's Syndrome.  I had NO IDEA all of this stuff could happen because of Sjogren's.   Sjogren's was diagnosed 8 years ago.  Last year I developed Interstitial Cystitis, which is  a related auto immune syndrome that affects the bladder.   50% of people with Sjogren's have IC.

Just as I was coming to terms, more or less with that, it became more and more apparent that things were NOT right with my balance and my head and my emotions.

After 3 MRIs and 2 CT scans, an EEG, NCV, and Auditory Brain Stem Test, it turns out that I have demyelinating neuropathy and ataxia.  I have an EEG that looks like constant seizures!  Gliosis in the frontal lobe white matter, and waiting to hear about the spinal tap done on Tuesday.  Everything looks like MS, of course, but since I already have pSS and IC, I rather imagine that pSS CNS will be the diagnosis.

Now that I am reading about this subject, I am connecting the dots from at least three years, and I'm very scared and worried.   I will be reading this forum avidly, to find support and answers.

[Bucky]

Hi Carolina - welcome to Sjogren's World. 

As you can see, we have a lot of members and a variety of topic discussions in our forums.  The search engine located in the top left can take you to specific threads about topics of interest.  Even though we are all different and have different degrees of Sjogren's - we're all the same . . . we're all looking for answers to help us deal with this disease as best we can.  We share the good times, frustrating times, questions, suggestions . . . etc.   We're a group literally from around the world - both female and male.

I hope you find this site helpful to you and look forward to getting to know you.   

Bucky

[Joe S.]

Hi Carolina, have you tried fish oil or flax seed oil?

[lynnmarie219]

Hi Carolina,

Welcome to Sjogrens World! I think that a lot of us here started to "connect the dots" as you say for a lot of our symptoms after we started to do research and were in the process of being diagnosed. Things actually started to make sense once we start to put two and two together.

Feel free to read all you can here as there is a lot of valuable information here and many kind and fun people. Welcome to the family!

[saranski]

You have found the right place to come and find support and learn more about SJS and ALL of it's effects.  I am also new to SJS and have found comfort in this support group.  The members here are awesome and find ways to lift you up when most needed.  Know that you aren't alone in this.  Please keep us informed and know that we care.

[Blue Kat]

Hello Carolina...I'm so sorry you're going through all of this.  I was just diagnosed 6 months ago and I think I'm just in the beginnings of the neurological issues myself, I'm afraid.  I'm finding that this forum is an excellent place to fine information and trade experiences.