Finally seeing a Rheumatologist Friday. Depressed. A few questions/history.

[alwaysimproving]

Hello everyone, thanks for welcoming me to the forums.
I am seeing a Rheumatologist on Friday.
As those with the most experience dealing with Sjogren's I hope that you can let me know if my pattern of symptoms matches what you've read/experienced and if you think there may be alternate explanations...

My symptoms may be minor compared to many of yours but being faced with something that may worsen daily I am extremely depressed, especially when I had so many hopes and dreams at my age.
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History:
21 YO Southeast Asian Male Medications: Pilocarpine 5mg
Family history: Autoimmune Thyroiditis (Mother), Vitiligo (Sister)
Allergies: Sulfa Drugs

I had a moderate fever for two days that I attributed to stress from pulling all nighters for final exams. Then it evolved into a SEVERE dry mouth for 10 days in December that was followed by a period of 3 weeks of joint pain at the TMJ (I thought due to clenching at night from stress of dry mouth):

Extreme hyposalivation
Cracked lips
Change in taste
Inability to swallow dry foods or eat non-moist foods
Trouble sleeping without salivary stimulant, even then poor sleep.[/li]

The symptoms disappeared as mysteriously as they had appeared after 10 days though the 3 weeks of jaw pain came about afterwards.

Followed by 3 months of NO SYMPTOMS what so ever.

Symptoms started again in March 15th in a very indolent course. I saw an Oral Surgeon who confirmed that there was reduced salivation from all of my major salivary glands; he referred me to an ENT.
I then saw an ENT that ran bloodwork, prescribed Pilocarpine 5 mg twice daily, and said follow up in 1 month. (Bloodwork pictured below, negative serology)

1 month follow up just discussed that my bloodwork appeared normal and did not state anything else. Advised me to seek rheumatology/allergist if I need to go further. Didn't too feel too comfortable with the ENT (DO and poor bedside manner) so I saw my PCP to see if I should get a 2nd opinion. He ran a comprehensive panel and HBA1C to rule out diabetes. Am now scheduled to see a rheumatologist.

Primary complaints:

Changes in quantity and quality of saliva. Low saliva production and it is watery in nature.

Hoarseness in throat, painful talking. Used to teach/tutor and cannot now.

Trouble eating dry foods.

Dry lips

Eliminated stress and environmental causes.

Bloodwork:
http://imgur.com/a/M3bLU

Not pictured is an STD panel (ruled out HIV, HEP A/B/C, HSV 1/2, Syphilis, and others)

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I am depressed because it seems like everything else has been ruled out.
I have gone from one of the most active students - academically and otherwise - to becoming extremely caught up with this condition.

The Jaw Pain/Hyposalivation/Xerostomia are the only confirmed symptoms I have had.

It seems unlikely that I have this condition but given the family history of Autoimmune Thyroiditis I am very worried.... I also had a lot of stress in my household growing up (domestic disputes), have traveled abroad and worked in medical settings so I may have been exposed to some viral trigger.

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Questions for now:

Are these symptoms consistent with an autoimmune condition?

Could this be autoimmune thyroiditis instead of Sjogren's?

I had complete disappearance of symptoms before, would it happens again?

How can I maintain positivity and focus on what I have to do?

[WhatYouSjo]

Hi Always,

I've been where you are. When my symptoms hit, I had a lot of anxiety. I was healthy, took care of myself, and fairly successful. I didn't want to believe I had an autoimmune disease. I researched every possible disease that could fit my symptoms trying to find an answer.

I will try to answer your specific questions:

Are these symptoms consistent with an autoimmune condition?

Yes, they are consistent with Sjogren's Syndrome (SS).

Could this be autoimmune thyroiditis instead of Sjogren's?

It is possible, though your TSH is normal and your symptoms are more in line with SS. Do you have fatigue, abnormal weight gain, or feelings of cold?

I had complete disappearance of symptoms before, would it happens again?

It is also possible. SS progresses differently for everyone, and it can go into remission, though it is rare.

How can I maintain positivity and focus on what I have to do?

It can be a challenge. First, you need to talk to a rheumatologist and figure out if you do in fact have SS. Unfortunately, about a third of SS patients are seronegative; that is to say, they have negative blood work. I myself am a youngish man (early 30s) with negative blood tests. My initial doctors (ENT, rheumatologist, PCP) dismissed the possibility that I had SS and told me that my symptoms were mostly in my head. I finally found a rheumatologist who agreed to treat me, and I have since improved. It sounds like your ENT was not helpful either. Don't give up! There are good doctors, and you deserve to find one.

Your next step will likely be a salivary gland biopsy. While I normally am not quick to recommend it, in your situation it may make the most sense, as you obviously have issues with your salivary glands. Make sure you find a very experienced oral surgeon who has done many salivary gland biopsies, as there is potential for nerve damage and infections if the procedure is not done well.

If you are diagnosed with SS, it can feel like your life is over. I myself went through the 5 stages of grief, along with a lot of anxiety. But you should know that it does not mean that your life is over. There are a lot of horror stories, and SS can negatively impact you quality of life. However, the disease progresses differently for everyone. Further, there are a number of treatments than can help - you can look at my signature for a link to my blog where I list some that I have found helpful. I can say that my health is better now than it was when I was diagnosed two years ago. Finally, there are many promising new treatments that are currently being tested. For me, focusing on the research and treatments helps me maintain a positive attitude. I also put together a blog (in my signature) as a positive outlet for my frustrations.

Let me know if you have any further questions - I'm happy to help as I can.

[SjoDry]

Hi AI,

Welcome to the group. The symptoms that you are describing certainly sound like Sjogren's. Also, the intermittent nature of the symptoms seem classic for SS. I always call them, the 'now you see em, now you don't' symptoms. You might have one symptom happening for awhile, and then that one's gone with another one or more are in it's place. It is also what makes diagnosis challenging.

It sounds like you are following the right course, to establish a good Rheumy (emphasis on good Rheumy). A good doc will answer all of your questions, address your symptoms and help you look for answers, and most importantly, the right treatment. It is not uncommon to go through a few Rheumies before finding the right fit. I hope the one you see tomorrow is the right one for you.

It can be overwhelming to realize that chronic illness has become an uninvited part of your life and was not part of the life plan you had for yourself. But you can still realize hopes and dreams and live a full life no matter what Dx you pick up on the way. As Luke mentioned, everyone is different. There is a lot of variability with SS. Maybe your goal achievement doesn't happen in the same timeline that you envisioned...it doesn't mean it won't happen.

We all have our down moments, days or periods of time..but we also have better and even good days. All is not lost. As determined and goal-driven as you seem to be..it would probably be helpful to do the same with your health. For instance set goals to: Educate yourself about your Dx, Find good docs, Get treatment plan and most of all, be determined to not let any illness determine who you are. You are not your illness. You are still that person who is "always improving"..that doesn't have to stop now :-)

There are approximately 20-30% of people who are seronegative for SS or other autoimmune illnesses. You will find that docs have different thoughts about this. Some believe that you only have SS if you test positive by bloodwork (and/or other tests lip biopsy, etc.), while some could care less what your bloodwork says..and will treat your symptoms regardless. Just want you to be aware of that when seeing your new doc. I think it's always a good question to ask the doc. I went through 4 other Rheumies before finding the one I have now. To save a few co-pays, I got to where I would ask that question either prior to or at least at the first appointment. It saves time & possibly $.

This can be a crazy, roller-coaster journey. The way the symptoms come & go. Many of us have been to docs who thought we were hypchondriacs. Just take a deep breath and forge on. It is important to stay positive.

Good Luck at the doc's appt., please let us know how it goes.
SjoDry

[cccourt1942]

Hi Always,
    Welcome...but sorry you had to find us.  You have been given great and specific info.  Hope it helps you. 

    I am going to address the positive and negative aspects for dx of SjS...along with symptoms.  btw: this is JUST WHAT I THINK.  I am not a dr. nor a medical scientist.  After you have been here awhile, and you read the stories of numerous members, you will know why I think what I am going to say.
    1) Time and age of onset:  Well....so many here (mostly female) say they believe they have had one or more symptoms since childhood or very early adulthood.  The majority of us report heavy onslaught of symptoms at perimenopause or menopause (mid 40s to about 50)  (that age range is fluid).  I believe many of us (including myself) have had SjS for a LONG time before we even ask about what's wrong with us.  Exactly when the symptoms began to aggravate us that much is up for discussion.  Was it when I was 28, 35, or 44?  The fact is I asked at age 71 and was dxed immediately---thru bloodwork.  The doctor was surprised.  He said no one can ever go back and say how long I've been positive for SjS.   You may be more sensitive to the symptoms themselves...or your studies or lifestyle may make them less bearable.   Again, after reading many stories, I believe there is early onset SjS which does give you the miserable symptoms, but not enough to give you positive results.  (Or as one respondent suggests:  seronegative is a possibility!!)
     2)  Disappearance of symptoms:  This is something I believe happens (and happened to me) before you pass the positive mark.  It HAS to be.  There are too many of us who have lived full, productive, healthy lives before we were brought to our knees.  This is a phenomenon which has not been studied, identified, nor discussed. 
      3) Salivary gland dysfunction:  (not yet confirmed for you) This is the symptom which accompanied me through my last 5 or 6 year descent to ultimate dx.  I suffered sialadenitis  and dxed same by an ENT who never suggested SjS or other elaborate (MRI, biopsy) parotid eval.  He explained the condition and successfully treated me for bacterial infections.  I was told the problem was quite common.  This can level you for days at a time...and kept me from eating as I didn't want to make myself salivate due to pain.

       That last one is likely the  path for anyone to consider a possibility of SjS.  The disease itself is difficult to dx at any stage and age.  I have met two very young dxed individuals who have zero symptoms.  I have urged them to maintain contact with a rheumatologist yearly to have a well documented history.  The other reason is to stay abreast of studies, drugs, and advances made for treatment (or pray for in your lifetime--a cure!)  Those salivary glands are worth trying to save.  By the time I was dxed, all but one of the six major ones were atrophied. 

        Good luck.  Lots of very helpful people here to listen to you and offer you their takes.

Where do you live?  With that sophisticated bloodwork print out, I am going to guess Singapore. 
c3
   

[Kathy57]

Dear Always,

Pilicarpine can be taken up to four times per day.  That is the maximum dose.  I switched to generic Evoxac because it worked better for me than the Pilocarpine, and it can be taken three times per day.

Biotene gel helps and using Xylomelts (especially at night) help the unbearable dryness quite a bit.  I use two Xylomelts - one on each side of my upper gums at bedtime.

If you look it up under the search section, you will find more helpful advice.  You can purchase Xylomelts on Amazon.

Unfortunately, I do think you probably have Sjogren's.  I am seronegative but have never underwent a lip biopsy.  My Rheumatoligist is excellent and very experienced.  He told me not to bother with the lip biopsy because he was going to treat me for Sjogrens regardless.  He saved the quality of my life.  He also told me that you can have Sjogrens  and be seronegative and that it is more common than you might think.

Plaquinil has helped me immensely.

Good luck with your Rheumatoligist appointment.  What you are feeling right now is normal for your situation.  Things will get better.  Be kind to yourself.  You are not alone.

Welcome to the forum.  I am not a doctor - I am a nurse, so you can just take my advice with a grain of salt.  It comes from the heart and it is free.

Hang in there and let us know how your appointment goes.

Kathy

[Sooki]

TSH can vary, especially if there is an autoimmune connection.  Your rheumy may decide to retest it.  And even at 2.25, it may help to lower it a little.  My hypothyroid family members are all happiest around TSH = 1. 

You might also ask for a vitamin D blood test.  Recent research has shown that autoimmune diseases respond well to much higher vitamin D levels than most people have.  I take a D3 supplement every day and my symptoms have improved from that alone.

Good luck on your journey.  If the doctor agrees that there is an autoimmune basis for your symptoms, going on plaquenil may help you tremendously. 

I hope you find improvement soon!

[alwaysimproving]

Thanks eveyone for your replies.
C3, I'm in Florida, believe it or not.

The rheumatologist appointment was interesting. He started with some positivity (?) that of any connective tissue disorder to have, this is the one he'd pick, Sjogren's is the one as its "very manageable". I suppose that is true, but as a 21 year old I'd rather have no condition!

He did state that it could be the disease my ENT thought it was (oral lichen planus) but very unlikely. He took a lot of blood for a very in detail test and said if all the antibodies are negative we can do a lip biopsy (which would be helpful only of positive).

He seems pretty experienced, and even he said that it does NOT look like sjogren's, but that he may have to eat his words.
I see him again next week.

More questions:
Could this be a local infection in my salivart glands that's gone haywire, instead of systemic?
Do you think there are people with pre-sjogrens (not all the symptoms) whose symptoms resolve over time and dont come back?
If this is sjogren's, will I just keep getting worse and worse or will my symptoms stabilize?
Has anyone else had their drastic sicca symptoms completely reverse  dissappear like mine did between December and March?

[Deb 27]

always improving.   I am sorry you are so young having these symptoms.  I had a similar onset to you with on and off symptoms. I am seronegative and got diagnosed just last year with a positive lip biopsy. My first rheumatologist (who thought I had seronegative RA) said AI diseases  can be slow to develop or come on very acutely. 

If you go for a lip biopsy, have an initial appt first with an experienced ENT Dr. and ask them how they do their biopsies. If they say they cut over an inch, find another Dr.  I didn't have that bad of an experience with mine but others have when the Drs. did too large of a cut on the inside of the lip.  I don't mean to scare you.... It just seems like a lot of people have had bad experiences. Having a one inch cut on the inside of the mouth isn't pleasant. Mine was like 1/4 of an inch and he got out two saliva glands.

I think you have to have the genetic tendency for an AI disease and many Drs. feel some sort of virus or bacteria  hit us at the right time and our immune system goes into overdrive. I too worked in the medical field in labs and got exposed to a lot of  stuff including some nasty chemicals.   

With all that said, I hope you find some answers and some relief!

I do find I feel better when I take some Maxi Tears (Omega-3 oil supplements)   
Vit D3
Multi vitamin b/c I was low in some vitamins.
I also take generic plaquenil

Good luck with all of this and welcome to the forum. It's an awesome bunch of folks here!