Living Undiagnosed, is it Sjogrens?

[Peach15]

I have had the hardest couple years of my life with new health symptoms popping up one after another. Have been to multiple doctors, had countless blood tests and procedures done, and apart from osteopenia (unrelated), raynaud's, and positive ANA 1:320, they have not found much yet. They have said it's "non-specific autoimmune" right now. I am just so stressed out and exhausted of not feeling well for so long and not knowing what is wrong with me. I am 31 years old and before this was eager to start a family with my husband.

The rheumatologist I see has suggested Sjogrens but I have not tested positive for SsA or SsB. I have put off the lip biopsy as I have dealt with too many issues that I didn't want to deal with another procedure right now. (I also had stress fractures in both feet for 6 months this summer due to osteopenia).

Here are my symptoms that have showed up gradually over the past 2 years in order:
Dry eyes and increased floaters
Low back pain on and off
Vaginal dryness
Bumps and swelling of fingertips in cold weather
Ridged nails with white spots (lupus of the fingers)
Mental Fog
Sinus pain/pressure (dryness)
Increased thirst (some dryness)
Fluid in ears causing pain
Periods of extreme fatigue and dizziness
GERD- acid reflux trouble swallowing
Redness and burning of genital area (negative yeast and bv)
Most recently muscle twitching and tingling/numbness in various muscles throughout my body

Most recently my primary Dr threw out the possibility of MS and I am just freaked out by all of this. Could most of these things be related to Sjogrens? Any insight is greatly appreciated.

[ashler]

Sorry to hear about your problems. I am myself looking for a diagnosis since 2012. I am 37 years old male.

What immunologic test have you taken?
What about viruses? What viruses have you been tested for already?

Just to give you an idea, some of the tests I have taken:

https://docs.google.com/spreadsheet/pub?key=0AoXYb8O_eRNhdHdKVERqWk8wOFBuOWxGb0dNOUw5LVE&gid=3

(all rheumatic tests negative by the way).

My main problem are sicca symptoms, specially xerostomia. My salivary glands are not working properly and I have a very dry tongue.

[Joe S.]

Welcome to the forum. Some of us were Dxd without positive blood work or biopsy. My dentist was first, then my eye doctor mentioned it. My neuro suggested it. These were all after I had a moth on my face after being in the sun. It took me several years and 4(?) rheumys to get a SICCA Dx.

[cmclien]

@ Joe -

Just wondering, with the moth type rash on your face wouldn't that be more likely to be lupus? 

[cmclien]

Here are my symptoms that have showed up gradually over the past 2 years in order:
Dry eyes and increased floaters
Low back pain on and off
Vaginal dryness
Bumps and swelling of fingertips in cold weather
Ridged nails with white spots (lupus of the fingers)
Mental Fog
Sinus pain/pressure (dryness)
Increased thirst (some dryness)
Fluid in ears causing pain
Periods of extreme fatigue and dizziness
GERD- acid reflux trouble swallowing
Redness and burning of genital area (negative yeast and bv)
Most recently muscle twitching and tingling/numbness in various muscles throughout my body

Hi Peach,
I think yes, many of those are common as SJS can effect so many body systems.  Will your rheumy not diagnose without positive sjogrens specific antibodies?  There is a fare number of people - I think at least 30% where the antibody tests are not positive.  A very frustrating situation to be in.  I'd go to another one to get another opinion.  What do they think is causing all these symptoms?  I have many of the ones you listed including fluid in ears and the mental fog in addition to the hallmark dryness issues.  I have painful bladder syndrome and it sounds like you have vulvodynia.  I also have a mild version which comes and goes.  Honestly I'd go to another rheumy.  I guess it doesn't really change the treatment options excluding immunosupressants.  Four years ago I was diagnosed without positive specific sjogrens antibodies.  I am going to another one in my new city since I've had a lot of unilateral joint pain and maybe or maybe not it will show up this time. 
Have you been to an opthamologist to have your eyes looked at and diagnosed?
When I was diagnosed my rheumy when looking at all my combined issues said it wouldn't be anything else since it wasn't caused by medicines or hashimotos (the terrible chronic dry eye).  Such a frustrating diagnosis since it can involve so many body parts.

[Carolina]

Welcome Peach, Ashler, and cmclien,

Many of us have journeyed long and far with our Autoimmune/Immune Mediated conditions.

Sjogren's, particularly can be quite elusive when it comes to clear diagnosis.  For the majority of those with Sjogren's, the condition is fairly straightforward.  The autoimmune autoantibodies attack and damage the moisture producing glands in the body, and those with the condition learn to manage the symptoms without resorting to the more 'serious medications' like Plaquenil and Methotrexate.

In fact, a study in of elderly people in Japan, with another condition that was under study, discovered that a very high number tested positive for Sjogren's, and did not know they had it.  I think this is because the dryness is often mistaken for symptoms of aging.

So here you are, with us.  With us is where you can ask questions, express your concerns, and look for support.

For most of us who post here regularly this has been 'a long strange trip".  As my Duke Immunologist says "We use the tests we HAVE, not the tests we NEED", which is why many of us do not test positive for Sjogren's, even tho our moisture producing system is damaged.

And Sjogren's can damage many other organs and systems.  Some people even show up FIRST with neurological symptoms.

When organs and systems are damaged, specialists in those areas deal with the problems.  Lungs, nerves, tendons and ligaments, skin, and many systems are at risk.

In addition, autoimmune/immune mediated conditions like to hang out with their friends: Rheumatoid Arthritis, Lupus, Hashimoto's, Raynaud's, Meniere's, Peripheral Neuropathy, Small Fiber Neuropathy, Interstitial Cystitis, Anemia, Blepharitis, Psoriasis, Lung conditions particularly, and so on.

It is difficult to distinguish what is part of the condition already diagnosed, and what my be something new.  That is where we come it handy at times.  A place to bounce ideas and concerns around.

The basic 'co-conditions' of autoimmune/immune mediated diseases are:  profound fatigue, body pain (myalgia), and depression.  These are caused by the inflammation of the attack on your system.   They are PART of the disease.  They are not 'your fault'.  But they make life very difficult at times.

We know of medications and over the counter products that can help.  We are always here to listen and help.

Again, Welcome

Hugs,  Elaine

[cmclien]

In addition, autoimmune/immune mediated conditions like to hang out with their friends: Rheumatoid Arthritis, Lupus, Hashimoto's, Raynaud's, Meniere's, Peripheral Neuropathy, Small Fiber Neuropathy, Interstitial Cystitis, Anemia, Blepharitis, Psoriasis, Lung conditions particularly, and so on.

Hi, thanks for the welcome!  Oh my gosh, I was diagnosed at the age of 18 with Meniere's disease (which is normally an middle aged person's disease) and they never could find a cause.......I still have to use nasonex and mucinex-d to keep my ears more clear and inflammation down though no longer have dizzy spells, mostly tinnitus and a plugged feeling.

I also have to say, I do not have profound fatigue, not sure what that means, but as long as I take enough thyroid meds and keep my tsh low than I am not fatigued really at all....

[katie1111]

I hear you.  I am sero and biopsy negative.  My hepatologist ( I have PBC - an autoimmune disease of the bile ducts) says I have "Sjogren's-like symptoms" and asks, jokingly - Why do you have to be so complicated.  The last rhuematologist says "you are beyond my expertise).  The first neurologist asked me what I thought he should order.  My gastrologist thinks I may also have PSC - but I can't get all my doctors (I seem to collect doctors like some people collect stamps) to agree on what is going on.  My primary says - look we all know you have something autoimmune going on - so lets treat that and not worry about the name.

Remember is your immune system that has the problem and the rest depends on what your immune system feels like attacking that day (or hour).  So accept the fact that you are on a roll-a-coaster ride.  Listen to your body and do what you think is best.

Hang in and just make sure you stay in control of your situation.

[Peach15]

Thank you for all the quick responses and thanks for the warm welcome!

Ashler- I am sorry you have been struggling to get a diagnosis for so long too. I have not had the extensive tests you have. They haven't run any viral tests. Just the rheumatic, some endocrine, and the basic stuff. My Primary did say she may test me for Lyme too, but I am 99% sure that is not what I have.

Joe S.- good to know that some of you haven't tested positive with bloodwork or lip biopsy but still have it. Sorry to hear it took years and multiple doctors to diagnose it. Is it possible for the dryness to gradually get worse as this disease progresses? My dentist and opthalmologist don't think I am dry enough yet to warrant a Sjogren's diagnosis, however I haven't been able to wear contacts for 3 years and use lubricating eye drops constantly. I haven't seen a neuro yet, as I just started experiencing the muscle weakness, twitching, and tingling. The rheumatologist I see hasn't officially diagnosed me, just says it could likely be Sjogrens and that he'll treat me as I do have it. He has suggested Pilocarpine and Plaquenil, however I don't feel as though my symptoms are bad enough yet to use them. From what I've read, Plaquenil mainly treats the fatigue and joint pain, right? I would take it if there was a good chance it would stop my body from attacking itself so much causing my wide array of issues.

Cmclien- yes it is a frustrating place to be, see what I replied to Joe above. Rheumy hasn't "diagnosed" but has been treating me as though I have it. Basically throwing medications at me to try. I am not a huge fan of medications and wonder if the ones he has suggested will even help the issues I have. Otherwise I have just been told it's a non-specific autoimmune disease. Thanks for sharing your story and insight. I am sorry you have gone through the same thing. I may look into finding a new rheumatologist. Do you know if there is a recommendation list somewhere on these boards? I wish you luck with finding a new one in your new city.

Elaine- thank you so much for the warm welcome and all the info. I have done a lot of research myself but it is way better receiving it from those who have been there and are going through it themselves.
I also thank you so much for the support. There are a lot of times I feel alone with this, even though I am blessed to have a loving and supportive husband, mother, and friends. Really appreciate the support!

Katie1111- so sorry you have gone through so much too. Thanks for the advice. You are right it is definitely a roller coaster ride so far (not a fun one!) I am working on trying to relax and listening to my body. I know the stress only makes things worse. Thank you.

[cccourt1942]

Denying meds:  I can't speak to plaquenil.  I do not take it.  MOST do.  I do take pilocarpine.  This is to answer your question "does the dryness get worse?".  Really..we achieve a new normal of how our dry mouths feel ON MEDS ....and how our eyes feel on meds.  Do the meds stop the dryness?  Probably not.  If they reversed the dryness, OR STOPPED it, we wouldn't have to take the stuff several times per day.  It apparently has zero afterlife. 

Almost all of us take either salagen, pilocarpine, evoxac, etc for moisture.  I am not on Restasis..many are.  I do take Omega 3 for my eyes + eyedrops day and night.  After dx, I used eye gels at night.  After about 6 months with the Omega 3, I abandoned the nighttime gel application.  I don't know if the eyedrops you use or for easing pain with intention of wearing your contacts once again, or for lubricating your eyes for dryness which accompanies SjS.  I think most can differentiate this by if you make any tears ...not just crying (few of us can cry)... but any type of tear welling in your eyes.  For instance , upon my dx, I had ZERO moisture in my eyes (unless with eyedrops).  After a year on Omega 3, I have some moisture.  No tears...but I can feel moisture at times without the eyedrops.

I am referring to dryness treatments as your physician has offered the pilo Rx...and the others I have mentioned are OTC.  The reason you want to treat your symptoms (before diagnosis) is in order to arrest the damage being done to your lacrimal and salivary glands. 

Good luck..and welcome (    ) to the group!