Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Wal on December 14, 2016, 04:51:50 PM

Title: Merry go round of various flares
Post by: Wal on December 14, 2016, 04:51:50 PM
I'm not sure if I asked this question or not, but does everyone's symptoms (or most everyone) come and go in flares. Like the day you end one another begins? My eyes have been horrid. I had a decent day yesterday and today has been really good with them and then bam! The sensory issues (crawling, pricking, pins and needles all over my body begin. Before the eyes were bad it was my mouth. My last episode with the parasthesias was last year at this time. I'm so angry right now. I don't have an official diagnosis of SS because all my blood work is negative, but I'm going crazy as to what's wrong with me. I can only assume it's SS due to: dry eyes, mouth, nose and sensory issues. The sensory started in 2008 when I was 28 years old. I'm so over it.
Title: Re: Merry go round of various flares
Post by: Kathy57 on December 14, 2016, 10:00:53 PM
Wal,

I hope you are at least getting appropriate treatment for your symptoms!  I am seronegative, as well, but my labs have not been checked since 2014.

I don't have any faith in blood work because I have never felt so sick, for so long, in my entire life, before my Rheumatologist started treating me for Sjogren's!  It took so long for the meds to kick in but I can function now.

I don't have any sensory symptoms like you do.  I do have asthma and barrettes esophagus with a lot of GI symptoms.

I hope you have been offered meds because you deserve them.  Keep fighting for your health!

Kathy
Title: Re: Merry go round of various flares
Post by: cahaden on November 30, 2017, 05:45:40 AM
Hello I?m new here but your post sounds like I wrote it. I?m 56 and my life has been a roller coaster. Blood work is negative so I?m not sure about my next step. What does it take for a diagnosis? Also what is the treatment? I see your post is a year old so I hope you are in a better place.