Positive for Sjogren's... :(

[CiViCKiDD]

Here's my story:

Early November- hit my head getting into my vanpool headed from work->home, felt my face go numb and couldn't concentrate a few minutes later on work I was trying to do on my laptop. Looking at it now doctors think I had a concussion...

That same night my wife wanted to go out to a local party, I felt like crap but figured I could deal. Went home, slept, and the next morning when I tried getting out of bed I fell back in, feeling weak. Had a massive headache for the next few days. At work the next Monday I couldn't physically stay awake at my desk, I was literally falling asleep every few minutes and waking up...it's never happened before, and never having any health problems before I didn't make much of it, thinking it would just get better over time.

The next day while dropping my wife off at the airport I felt a burning sensation in my right foot, then a tingling in my right leg, and went home to rest it off instead of going to work. It just got worse over the next few days, with symptoms like:

-being unable to move my arms/legs immediately after waking up. It would take 30seconds-1minute to be able to move it.
-weakness in the right side of my body, which "moved up" from my legs to my arms, and finally up to my face.
-loss of appetite (possibly due to anxiety), I lost 10+ pounds in 7-10 days...
-sudden appearance of floaters (never had any before)
-sudden emergence of acid reflux (never had this before)
-trouble swallowing (also new, like everything else)
-massive tremors
-tingling in my legs when I sat down, oddly when I moved my butt forward to "straighten" my body out the tingling quickly went away.

I'm sure I'm leaving things out, but I was a mess. I went to the ER three times and each time they said nothing was wrong and sent me off. The third time they asked me what I wanted them to do, and I just said figure out what's wrong with me so they admitted me.

Anyway, neurologists/general doctors couldn't figure out what was wrong with me (I had 3 full head/neck MRI's, CT scans, multiple batteries of blood tests). I apparently have elevated IgG in my serum (2200, should be under 1600) but after a spinal tap it doesn't seem it's being produced in my CSF. Also, I have two oligoclonal bands but no lesions on any MRI's. Neurologists felt it was unlikely that I had MS.

...finally, I decided to see a Rheumotologist. It was probably 2-3 months after the symptoms started, and I was getting better (I could drive again without my feet tingling/going numb). Blood tests showed that I was positive for:
-Thyroid antibodies (at levels so high they had to dilute the sample multiple times), with a value of 1100. It should be below 40!! TSH levels were normal, doctors say my body's managing it well so far but my thyroid's obviously going to fail soon at this rate.
-RA "Latex Turbid", 63, should be under 14.
-...and of course, Sjogrens was >8.

Symptoms were dissipating and I didn't have "classic" Sjogren's signs, so they didn't put me on any meds. Rhemotologist said it's probable I had a concussion, given the symptoms (all from hitting my head getting into a car!) and that may have started an autoimmune response. Main symptoms that live on are:
-floaters, of course...got it checked out twice by an ophthalmologist, they can't even see the floaters
-weakness that comes and goes in the legs
-minor bouts of dizzyness from time to time
-and now my hands are pretty dehydrated, so much that they're wrinkled at the bottom. I've been applying hand lotion a few times a day for the past week and it's almost back to normal.

Sigh...I'm 30, just got married last year, finishing up my engineering masters and set to take classes for an MBA next fall, wifey is in dental school finishing up. Kind of sucks this is all happening at the beginning of my life. My career just started taking off too. I rarely think about my health problems, pushing forward trying to make sure I build a secure financial foundation for my family, but in those moments I think about it it can get pretty depressing. (Luckily I don't have much time to feel this way!)

(P.S. Sorry for the long "rant," I can't really bring this stuff up with family because all they tell me is "you're OK!!!"

[Joe S.]

Welcome to the forum. I would imagine that the Dr's checked for TIA. There is a lot of information on this forum. Some of us have posted what we are taking in our signatures to help others to find what works for them.

[Meld256]

Hi CivicKidd,

Welcome to the forum!    Hope you'll find lots of info. here to help.
Well, now; you had a bad winter, didn't you?  It sounds like you may have suffered a concussion.

About the rest of it and your blood results:
That RA is pretty high. From what I know, it does not signal that you definately have Rheumatoid Arth. It can also mean other autoimmune issues happening.
Thyroid is high but that can be well-managed with medication.
Positive for Sjogren's.  This doesn't mean that you will have further or severe issues with this anytime soon, or ever.

You feel free to rant here anytime. We know what it means to feel like you can't really talk with friends or family. If they say, "you're OK!" obviously they WANT you to be ok, and the thoughts of you having some health issues might be scary for them, just as it could be for you.

That said...the bottom line is that there are treatments/medications that can help with all of this. It can improve! Find out all you can, take a deep breath, and know that you are not alone in this.  When you go back to the doc, have a list of every symptom/strange thing that you have happening.  Keep us posted as to how you're doing, and take care of yourself.
Melinda

[CiViCKiDD]

Welcome to the forum. I would imagine that the Dr's checked for TIA. There is a lot of information on this forum. Some of us have posted what we are taking in our signatures to help others to find what works for them.

Thanks Joe! Well, I went to a heart specialist because I *DID* have some weird heart symptoms (a few days after this all started I would wake up with racing heartbeats, and sometimes have it during the day. It varied between 120-180BPM, according to my math.) The worst was when I was sitting at my desk at work, and it suddenly happened...I felt my right leg go numb, tried getting up because I was in disbelief and then tried walking down the stairs outside - I thought moving around might make it "better."

So the cardiologist gave me some device he wanted me to have connected for a day. There was an irregular (fast) heartbeat at one point, and the doc just said it he could get me started on some meds (forgot the name) to normalize this, that my mom has SVT (supraventricular tachycardia) and I might have the same thing. I told him that was unlikely, given the sudden onset of all these symptoms after hitting my head so he told me to work with my neurologist. Luckily, these "issues" disappeared. EKG, sonogram, MRI, CT scans showed no indications of problems though.

[lynnmarie219]

Hi and welcome to Sjogrens World!

There are many of us here that totally understand when you say it's hard to bring some of this stuff up to your family. I agree with Meld...that many times people just don't want to deal with it...not because they are being mean or hurtful...but because they don't understand...and what people don't understand can be very scary!

Come here to "rant" all you want...its helpful and there are many kind and knowledgeable people who will listen and try to share personal experiences.

Keep on trying to get the answers and treatment you need...don't give up!