Don't have a diagnosis, but maybe it is Sjogrens?

[infinitedreamer]

Hi all,

I have just discovered this forum and have been doing a lot of research on sjogren's. I have been sick for nearly 7 months now and the doctors can't figure out what is wrong with me. From the research I've done on sjogren's it seems that it takes a long time to get this diagnosis. I'm wondering if this could be something to consider. I would appreciate any input from members as I think that people who suffer from undiagnosed/difficult to diagnose debilitating illnesses sometimes know better than doctors!

My symptoms began suddenly 7 months ago with severe (and I mean SEVERE) stomach pain, diarrhea, and low grade fever, followed several days later by sore throat, swollen lymph nodes in the neck, extreme chills, night sweats, severe neck pain and extreme fatigue.

The symptoms that have continued are the low grade fevers which I get nearly daily that range from 99.0 - 100.9 and they are usually first thing in the morning and sometimes last all day, but usually go away in the afternoon/night. I also still have swollen lymph nodes in my neck, but they sometimes change: sometimes they are swollen under my chin, sometimes in the back of my neck, sometimes on the side of my neck. I also still have stomach issues, with pain, constipation, diarrhea, occasional vomiting, and loss of appetite. I have lost more than 15 pounds. I also have dry mouth (but I have had that for years), but it's worse since I've been sick. I am also still very fatigued.

I also still have the neck pain and they have discovered that I have arthritis and bone spurs (I am only 30 years old). I also have had extreme back pain for several years for which I do take pain pills.

I am wondering if I could possibly have sjogren's. I know that very few people experience the same set of symptoms, but I was wondering if anyone here has expereinced symptoms similar to mine, and if it would be worth it to suggest this disease to my doctor?

I appreciate any and all thoughts!

[JannaLee]

Welcome Dreamer,

I'm so sorry your are feeling so poorly!  Below is my guess.  I'm totally NOT a doctor~!

On first reading, and not knowing what tests have been done, I would ask the doc to look into:
Lyme Disease
Lupus
and any possible infection (white blood cells.)

If you have not seen a rheumatologist, I think you should.

Most importantly, don't give up.

Sending you empathy and understanding!
Janna

[Patze]

Hi Infinitedreamer,

Let me welcome you to the SJS World and family!  Please continue to check out the board as there are just scads of topics that might interest you, and I won't even mention the oodles of wonderful members here either!

As I'm not in the medical field, I can't say if you have SJS or not, but you do have some interesting symptoms.  Just curious, has your doctor performed blood tests looking for any autoimmune disorders?  If not, is he willing to refer you to a rheumy maybe?  Have you seen a gastro about your stomach problems?  That has got to be so miserable!

You are so right, everyone is so different, and what symptoms I may have, you may never experience, and vice versa.  I came into SJS a bit different than a lot of members as I'm sero negative, for everything.  I saw an endo to help sort out my thyroid/goiter (have Hashimoto's diagnosed by biopsy), and I was still having symptoms even after the blood work became "normal" again.  Short story, the GP got sick of me still coming in with all of these symptoms every few months, and finally referred me to a rheumy; the rest is history.

Again, welcome, and I sure hope that you get some much needed relief soon!

Take care of yourself, and keep us updated, okay?

Patze

[lynnmarie219]

Hi Dreamer and welcome to Sjogrens World!

I am glad that you found this site and also to hear that you are doing your own research...one thing we all learn is that we have to be our own advocates many times when we have something medical going on that the docs cant seem to figure out....just make sure that you are looking at reputable sites so as not to scare yourself to death (ie Mayo Clinic....Web MD... or ask your doctors to suggest some other ones).

As the others have said...we aren't doctors so we can really say what you have...some of the symptoms could be sjogrens but could also be something else. Since you have a fever often it would make me wonder if you don't have some kind of infection going on...I also think seeing a good rheumy and getting some blood work done for autoimmune is a great place to start!

I hope you get some answers soon so you can start some type of treatment and feel better....keep us posted! 

[infinitedreamer]

I am currently seeing an infectious disease doctor, but had never considered seeing a rheumatologist. I will definitely ask her about that when I see her next. It sometimes seems to me that I do have some sort of autoimmune disease since my body always seems to be attacking itself.

It gets tiring standing up being my own advocate when the doctors don't know what to do with me. I just sit and cry sometimes. I am quite stoic, and don't like to show how sick I am, so I push through it, living my life as normal as possible when underneath I am just screaming in misery. So I don't think the doctors even realize how sick I am just for the simple fact I don't look it! But I'm quite to the breaking point and I think that's going to come out in the doctors office the next time she tells me she doesn't know what to do next. But maybe that will be a good thing and she'll see just how truly desperate I am to get this fixed so that I can live my life.

Thanks for all the input everybody. This seems like a really supportive place. I will definitely stick around .

[Carolina]

Dear Dreamer,


Whatever you have, it is REAL.   I have no idea what it is, but it certainly may be part of an Autoimmune disease.    If you can get to a Medical Center associated with a Medical School, you will have the best chance of a diagnosis.

The Mayo Clinic defines Sjogren's as follows:

The two main symptoms of Sjogren's syndrome are:

Dry eyes. Your eyes may burn, itch or feel gritty ? as if there's sand in them.
Dry mouth. Your mouth may feel like it's full of cotton, making it difficult to swallow or speak.
Some people with Sjogren's syndrome also experience one or more of the following:

Joint pain, swelling and stiffness

Swollen salivary glands ? particularly the set located behind your jaw and in front of your ears
Skin rashes or dry skin
Vaginal dryness
Persistent dry cough
Prolonged fatigue

http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147/DSECTION=symptoms

Those are just the hallmark symptoms, but as with any autoimmune disease, there can be progression to other parts of the body, and often it.

And sometimes the autoimmune condition begins elsewhere and THEN shows up with Sjogren's symptoms.    So it can be very confusing.

Just what we NEED when we feel so terrible!   Everyone confused, while you are so sick and tired of being sick and tired.  AND most likely of being dismissed, or feeling dismissed because your case isn't easy to deal with.

Most American doctors are on a tight time schedule to see as many patients as possible every day.  They cannot afford to spend much time with anyone, as a result.   This produces terrible medicine for those of us who don't fit into easy categories.   It is a fact of life.   Most doctors at medical centers are on salary and have a greater interest in the process of figuring out what is actually going on.  And they also confer more with colleagues in the same and related areas, so they have better access to additional information and are more willing to bring in others in on your case.

Good luck!

Carolina

[infinitedreamer]

I do have some of those symptoms you listed Carolina. I have had dry eyes and mouth for several years before my sickness which makes me wonder if I've had sjogrenss for while before I presented with the other symptoms that I have. It's enough of a disturbance to my life that I can't run up the road to the store without taking a bottle of water with me and I can't wear contacts for longer than 2 hours, if at all. My skin isn't too dry though and I don't have a cough. I do have the joint pain, swelling, and stiffness in my neck, vaginal dryness and prolonged fatigue. Sometimes I can barely hold my head up at work and am even nervous driving.

But sometimes I feel ok, almost 100%. It comes and goes. Sometimes it comes and goes hour by hour. I could be fine at 10:00 and at 11:00 I'm collapsed on the bed, and by 1:00 I'm ok again. It's very strange.

I think I will take your advice and ask to be referred to a medical clinic. There is a Mayo Clinic about 2 hours from here. Maybe they have someone I could see. I need someone dedicated to finding out what this is so that I can live my life again, or at least learn how to live with whatever it is I have. The person I see now is supposed to be the best in town, but she's pretty much given up so I think it's time to move on. What is so hard is the amount of money I've spent! Thousands and thousands of my hard earned and hard to come by money, with still no answers. Doctors should be like lawyers: they don't get paid unless they win the case! (or cure in their case).

[sleeeepy]

InfiniteDreamer.....that was so funny...I actually laughed when I read where you typed..DOCTORS SHOULD BE LIKE LAWYERS...THEY ONLY GET PAID IF THEY WIN THE CASE...BY FINDING THE CURE!! That is soooo true and I wish that was how it worked!!  Maybe we would all get some help if the Docs had to work a little harder to get their cash.  Thanks for the laugh......Mary

[infinitedreamer]

Well my doctor should get paid because she found what I have: Human Parvovirus. (No it's not something i caught from my dog!). Apparently it's known as Fifth's Disease in children, but it is parvovirus for adults and it presents very different symptoms for adults (kinda like how chicken pox is actually shingles for adults and is much worse). For adults, parvovirus can resemble an autoimmune disease and can take a year or longer to subside. Of course there's no treatment except proper rest and good nutrition. But what a relief to finally know what I have!!  I do appreciate all the support I got here though -  you guys have been fantastic! It's a great place for people to come, no matter what ailment they're suffering from

[Katybarstool]

Wow Dreamer!

I know you have suffered badly, but if it's something that will resolve in a year or so, well done - I'm really glad it's not Sjogren's.

Hope it sorts itself out soon.

Kathyx

[JannaLee]

Such wonderful news!!

Green with envy and so delighted for you!
Janna