Author Topic: Scared, need encouragement  (Read 942 times)

Deseree

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Scared, need encouragement
« on: September 05, 2018, 08:34:18 PM »
So I just got my most recent blood tests back and they all came back negative. Normally I would consider this great news, but my symptoms have not subsided and I know something has to be causing all of this discomfort I've been experiencing. I am a 30 year old graduate student and seemingly overnight about 3 weeks ago I developed dry mouth and dry sinuses, dry nose, and dry throat. A very mild increase in dry eyes as well, but so far nothing too distressing. I still produce some saliva, but based on my own "at home tests", it appears to be diminished by about 50% of normal, or about 0.14 mL/min unstimulated. (I work in a chemistry lab, so I have access to equipment which I used to measure my flow rate.)

I have asked my doctor to order the "Early Sjogren's Test" that includes novel autoantibodies SP-1, CA-6, and PSP. I have read the scientific literature on this and found that it is fairly good at picking up early Sjogren's. Does anyone have any experience with this test? What were your results?

I am really scared at the possibility of facing a lifelong disorder, and was hoping to get some words of encouragement from the community here. I know everyone's experience is different, but certainly there must be a "typical progression". Does Sjogren's tend to completely destroy all salivary function eventually, or is this pretty rare? Does the exocrine gland destruction stop after a certain point, leaving some function behind?

Do you think the majority of Sjogren's cases are mild, moderate, or severe? I know that by asking on this board, I am probably going to get a biased response because people with mild disease won't likely be here, but I just can't seem to find this information in any of the published literature. As a university student, I can get around the publication paywall, and even so, I just can't seem to find any thorough statistical analyses regarding this condition. My doctor doesn't know much about it and is going to refer me to someone with more knowledge at a future date, but right now I am just looking for some positive words. I don't want whatever this is to destroy my life. Thank you guys so much.
30 year old female. Mildly positive ANA and RF. Positive markers on Early Sjogren's blood test. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking generic Evoxac.

araminta

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Re: Scared, need encouragement
« Reply #1 on: September 06, 2018, 03:45:59 AM »
Hello Deseree, welcome to the forum.   I understand your feelings about having the negative blood tests - all my blood tests were negative, and the Schirmers test was apparently normal, though I have Meibomian Gland Dysfunction.

I am pretty sure I have Sjogrens given the range of symptoms I've been having since early 2015.   At present I am preferring to treat the symptoms as best I can, rather than continue to the next stage for diagnosis, i.e. salivary gland biopsy.

My understanding is that there is no typical progression.    It seems some people carry on with fairly mild problems, others have sporadic symptoms, others get more severe ones.

Personally I use chewing gum all the time (though not chewing it too much) to help with dry mouth, Hyloforte eye drops, Ayr spray for nasal dryness at night, and lots of moisturiser on my skin morning and night.   You can also use Xylimelts for mouth dryness at night.   I try to not take on too many stressful things at once, and sometimes I need to lie down for a while in the day.    I feel very fed up with all this at times, but it has absolutely not destroyed my life!

I hope this gives you some pointers about things you can do to help yourself while you are awaiting further tests.    Above all, DON'T PANIC, it never ever helps!

Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Joe S.

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Re: Scared, need encouragement
« Reply #2 on: September 06, 2018, 04:52:11 AM »
Deseree, welcome to the forum.

A number of us are sero-negative. Our blood work does not show the disease. I remember symptoms from childhood. being a child I thought that it was normal. As getting a Dx takes and average of 7 years, the wait is hard to tolerate for most of us.

Management keys:
1. Don't Panic (anxiety) makes your pain increase.
2. Breathe through the pain. If nothing else Lamaze breathing helps.
3. Meditation helps. I use a simple method. In a relaxed body position with your eyes closed, look to the top of your head. As you breathe in think,"I am", and as you breathe out think "calm". repeat this for 15 minutes. If you loose focus, start again.
4. There are some supplements that can help.

Mine started with a moth on my face. I thought I had lupus. After a lot of tests I was sent to a neuro to see how much damage my Sjogren's had done to my nerves. The Rheumy did not want to tell me what she thought I had. A new Rheumy verified it was Sjogren's/SICCA based on symptoms not bloodwork.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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happylife

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Re: Scared, need encouragement
« Reply #3 on: September 06, 2018, 07:42:50 AM »
Hi Deseree

Take it easy. 99% probability that you do not have sjogren.

Sjogren is slowly progressive disease. Dry mouth takes an average of 3 years to become totally dry.

Unsimulated whole salivary flow of 0.14 is very low and cannot happen in 3 weeks if it was caused by sjogren. This kind of a drop is most likely due to anxiety or depression.

Now do not spend your money on early sjogren test. 90% sjogren patients will develop inflammatory dry eyes. So if your eyes become dry and you use eye drops more than 10 times a day, then undergo "rps inflammadry test".

If you are having sleeping trouble then it is almost certain that up have anxiety. This can be easily treated with oleanz 2.5mg. this will improve sleep and also relieve you from dry mouth.

All the best.

markt

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Re: Scared, need encouragement
« Reply #4 on: September 06, 2018, 08:29:38 AM »
Hi,

My advice runs a bit counter to some of the above. 

There is no such thing as sero-negative, as people cannot develop auto-immune induced Sialadenitis (cause of dry mouth/Xerostomia), Keratoconjunctivitis Sicca (inflammatory dry eye), exocrinpathy (dry skin), or systemic manifestations of Sjogrens without the production of auto-antibodies.  In other words, these are the main products of an immune reaction.  You may not have Rho/La antibodies present, but you surely can have a highly positive ANA screen with other relevant antibodies (SP-1, CA-6, PSP) that are indicative of early Sjogrens.  In fact, there are more autoantibodies germane to Sjogrens that are being discovered in murine models and being studies in humans (from several research articles).  So... current tests are behind the times... and better, more specific tests are just now being commercialized.  The EULAR, and other Rheumatology Boards, have not quite yet brought these novel antibodies into the fold of officially constituting Sjogrens.  Pretty sure this will become more and more accepted.

Anyways, I would highly advise the Bausch and Lomb Sjo test.  It's relatively inexpensive, and can be valuable in early detection, diagnosis, and treatment.  And believe me, getting a Rheumatologist to treat you is no small feat.  Especially without Rho/La antibodies.  I ended up testing highly positive for the antibodies mentioned above (included elevated TPO antibodies), in addition to low blood compliment levels (indicative of inflammatory blood disorders), and tested positive for HLA-B27 (also indicative of autoimmunity).  This was enough for Johns Hopkins to put two and two together, in light of recent research, and treat me with Rituximab... to which my symptoms responded favorably.

Please do yourself a big favor, pursue a diagnosis while you are not necessarily in dire straits.  For me, my initial autoimmune reaction occurred over the span of a week following an ordinary virus.  It started with remarkable dry eye and foreign body sensation...  and concluded with feeling like a fever/trash-fire in my face in just over 3 weeks time... inflamed eyes, dry mouth, dry MALT tissue, dry skin, night-sweats, etc.  I haven't been quite right since, but things have definitely improved... and I like my odds going forward.

Looking forward.  Lots of new medications are coming about specifically indicated for Sjogrens.  I.e. Lacriprep, Biologicis, JAK-STAT inhibitors, Cathepsis-S inhibitors, etc. 

Do not be afraid of the old wives tells regarding immune suppressant medications.  The body naturally produces immune suppressant chemicals/processes that allot the immune system to tolerate host tissue and regulate it's own natural processes.  With autoimmunity, that process is broken and induces lymphoproliferative disease, i.e. Sjogrens... and at least with current biologics, they are actually very targeted and do not comprise your entire immune system.  Only very specific co-stimulatory pathways/antigens (i.e. Rituximab and Orencia).   
« Last Edit: September 06, 2018, 08:36:54 AM by markt »

Judes

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Re: Scared, need encouragement
« Reply #5 on: September 06, 2018, 09:56:37 AM »
Hi Deseree I am so sorry, I am in the same situation as you. Happened rather fast About 6 weeks ago. I still don't have the answers but wanted to let you know you are not alone. Sending you warm and positive thoughts for encouragement. I had not heard of the early Sjogrens test I am going to ask my doctor about it, so thank you

Deseree

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Re: Scared, need encouragement
« Reply #6 on: September 06, 2018, 10:56:24 AM »
Thank you all for your kind words and encouragement. I am trying to take this day by day and I keep hoping this is all just some kind of extreme nervous system response to prolonged stress, but I just don't know how likely that is. I tend to be a bit of a hypochondriac so most of my friends and family think these symptoms have some harmless cause and it will fade away when my anxiety goes away. But I am really just not sure how anxiety could cause dry sinuses, although I can understand how it would cause dry mouth. Thanks again everyone for your replies, it really helps.
30 year old female. Mildly positive ANA and RF. Positive markers on Early Sjogren's blood test. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking generic Evoxac.