I've been trying to diagnose. Is this Sjogren's?

[Nick]

Hi guys,
I've been reading over this forum and you seem like a great group of people!

I've been having problems for quite some time and I've had a really hard time getting a diagnosis. I feel like I'm 25 years old going on 75. Here is my laundry list of symptoms, starting with current severity *deep breath*

-Trouble swallowing (this used to happen very rarely, now I've been having trouble constantly the last couple days)
-dry mouth and itchy eyes
-insomnia (I frequently wake up 10-20 times during the night)
-Pain in left ear. "Popping" in the ear and sinus. (ENT doctor found nothing amiss.)
-chills (used to be only on left side of abdomen, now travel through whole body)
-chronic heartburn
-Apparent occasional "panic attacks" (Zone out, extreme butterflies in stomach, diziness, see bright colors)
      -I had one of these in the grocery store today out of nowhere. First time in years. People must have thought I was deeply
       concerned with the bananas I was holding. I like to think this isn't a mini seizure, but who knows.
-sleep paralysis
-chest pains and palpitations
-tingling in arms and legs. Particularly the left side
-Restless legs when trying to sleep.
-Also my gums have been receding lately even though I take very good care of my teeth.

I went to the neurologist recently and she did lots of bloodwork, and I had a brain MRI and nerve test, all of which came up normal. She did the blood test for Sjogrens, which came up negative.

Basically I've never read about Sjogren's until I found this site, but it seems like a very real possibility to me. Have any of you experienced similar symptoms to me? I've been through so many tests and doctors over the years it's getting VERY frustrating, and I'm really losing faith in doctors.  I just keep getting worse while throwing my money into the endless medical machine, so I guess it's on me to find what's wrong.

[tomsmom]

I have had every one of the symptoms you listed.  Have you seen a rheumatologist yet?  Or had any bloodwork done to check and see if you had a positive ana or sjogrens markers or even lupus?  When I first got ill I saw a cardiologist, rheumatologist, and now a neurologist.  I know what you mean about being frustrated.  But keep pushing till you find out what's wrong with you and can get on meds to help.   I really hope you feel better soon.  Take care!
Danni

[tomsmom]

Nick,
I forgot to ask about your energy level?  Do you experience severe fatigue where it's really hard to get up sometimes or it just hits you suddenly and you have to sit down?  Not everyone with sjogrens has the fatigue but a lot of us do.
Danni

[Scottietottie]

Hi Nick 

Welcome to Sjogren's world.  We can''t diagnose here but anyone with sjogren type symptoms is very welcome. We're not medics though.

It's certainly possible to have Sjogren's and for it not to show up on a blood test. I'm not sure - but I think if you were having mini seizures, the neurologist would probably have picked that up.

getting a dx can be a bit of a struggle.  I hope you find the answers you are looking for soon.

Take care - Scottie 

[SarahLindsay]

Hi Nick,
My symptoms started very much in the same way as yours - dry mouth/difficulty swallowing, heartburn and other digestive issues, and random tingling/numbness/aches & pains. I'm 27, though as you mentioned, on bad days I feel decades older. After researching my symptoms online like you've done, I actually went to my doctor and told her I thought I might have SJS. Though my bloodwork was negative, there were indications of inflammation, and with my Schirmer's (eye test) results and the symptoms themselves, that was enough for her to refer me to a rheumatologist. Still waiting for that appointment, but it's progress...

I'm sorry we're not able to offer more specifics about whether or not you have Sjogren's? I know how difficult and frustrating the "not knowing" is... but I hope it's comforting at least to know that there are others with the same symptoms, dealing with a lot of the same unanswered questions. Good luck to you - and welcome to the Forum! I know I've found a lot of comfort here.

Sarah

[Nick]

Thanks for the kind words!

I do have fatigue sometimes where I just want to lay down, but I really can't tell if it's abnormal because I sleep so ridiculously badly. I have had a terrible time getting up as long as I can remember, really. I find after ripping myself out of bed, going to the gym really helps.

My neurologist actually did send me to a rheumatologist because I had elevated ANA markers, which could signify Lupus, Sjogren's whatever. After going over all my bloodwork and asking me tons of questions he didn't think that I had any auto-immune problems, and ANA can become elevated for no reason a lot of the time. The major thing that has changed since then is the dry mouth and swallowing difficulty. He asked me about that a few times, but at the time it wasn't bothering me.

One of the main things that bothers me is chills. Do you guys ever get chills? Somedays I will have constant chills running through my body (like I have the flu or something) and I just have to take it. I can't take any days off work, much less 3 times a week.

[voiceteacher]

I get those chills too - never really associated it with sjogrens but you may be right.  You don't have to have all of the markers or all of the symptoms.  We're all different - some much worse than others.   Some have many symptoms, others not many at all.  You need to find a doctor that won't care what you call your disease, as long as he/she will treat your symptoms since that's all we can do anyway.  As for the chills, I just live with them - - -

Voiceteacher

[kindandcaring]

Hi Nick

Reading your last post.
The bottom line is that you have symptoms that need to be taken onboard by treating physicians.
There job is also to help you through this period whilst diagnosis is made...

I had zero blood markers...even my ANA did not show until 4 weeks ago.(previous 4 years was negative)

Ive had countless Doctors the last 4 years..and only very recently can I say that the current Docs are starting to help in a way that I can actually feel the care that everyone should get when they are sick no matter what the cause.
So its not always easy to get a Doctor to help you get a diagnosis or treatment and be that supportive.

Please keep trying..if you are not happy or the diagnosis has stalled see the Doc again and state your case
tell them how much its affecting your life, tell them you want to pursue all possibilities for a diagnosis...and then once diagnosed you want treatment.

My 2 cents also would be..if you do not gert satisfaction seek alternate Doctors..

Remember No one deserves to be sick..yet we all deserve proper care when we are.

[Patze]

Hi Nick,

Let me also welcome you to the SJS World!  Please do look around as there are a lot of subjects that you might just find interesting.

I hope that your doctors can figure out what's going on, and be able to help you soon!

Again, welcome, and keep us updated, okay?

Take care -

Patze

[Nick]

Thanks for the welcome Patze!

Ah yeah there really doesn't seem to be anything that can be done about the chills. They are very annoying, though. My neurologist recommended trying magnesium supplements, I believe, but I haven't tried it yet.

Thanks for the advice kindandcaring, I appreciate it. I do still plan on going to doctors (I have an appointment with an ENT next week even), but I don't expect much out of it. I've been going to doctors about these problems off and on for about 8 years, but whatever the underlying cause it's obviously very hard to diagnose. The last couple years I started taking the step of getting copies of every procedure and test result and taking them with me, so I feel like I'm making progress. At least ruling stuff out.