[darlindeb25]

So, is there a difference? When my sleep doc told me I may have Sicca Syndrome, I had never heard of it. When I researched it online, not much is said about Sicca, and often refers back to Sjogrens. I found this:

http://palm.skynetmd.com/skymain_sea...lm&li=palm&v=2


Quote:
If the person has symptoms suggestive of Sjogren's, such as excessive dryness of the eyes and mouth, thirst, gritty sensation in the eyes, red injected eyes, mouth sores, abnormal taste, cavities, recurrent nosebleeds, cough, hoarseness, swelling in front of the ears (parotid enlargement), arthritis like symptoms.

I have a mouth full of fillings, and now, broken teeth. I have been diagnosed with dry eyes, although my boss, also my optometrist, says it's hormonal or allergies, so I use Refresh or Systane Ultra every day. The gritty sensation in my eyes is a daily occurance. The dry throat started last year, and now that I have a CPAP machine, I am finding the dryness much worse, with my tongue stuck to the roof of my mouth every morning, waking throughout the night needing a drink. Years ago, my voice changed to the deep, raspy voice I have now. I spend most of one summer with no voice at all. Dry nasal passages is a daily occurance too.

Is this something you develop, or are you possibly born with it? All of my problems stem from my celiac/gluten intolerance, that I know. My carpal tunnel was diagnosed before I was gluten free, Raynauds hit me years ago, aching joints, trouble swallowing certain foods, etc.

Yesterday, the doc I work for asked me about my neuro visit. When I mentioned Sicca Syndrome, I could tell he wasn't sure what I was talking about, so I gave him the connection to Sjogrens. He walked away, then came back in a bit and asked, "Can you eat 3 crackers?" By this time, I wasn't thinking ab out our talk earlier and I just gave him a look and said, "I can't eat crackers, I'm celiac, remember?" "Well, if you can eat 3 crackers, then you don't have Sjogrens." Now that's a diagnosis if ever I heard one!!! Much cheaper than lab work and such!!!!

I am going Friday for more blood tests. Any info any of you can give me is greatly appreciated.

Thank you.

[Megan]

Hi darlindeb,

Did he mean three crackers, dry, without anything on them?

That could be true I haven't a clue - but how funny is that "much cheaper than lab work and such"!!! If only! Very scientific - lol!

[dahlek]

I take it he's kind of a 'know it all'? But, not really much of anything......
I hope you can find an active Sjorgen's group, I KNOW there is one out there and I know from reading Silverlady's experiences and having met in my neighborhood one so afflicted that it's miserable stuff. I truly do hope that isn't YOUR case tho.
Upon Silverlady's suggestions [Billye] Ive been using the Biotene Oral Balance LIQUID..more like a lotion/glop stuff. I keep a bottle of the spray next to my bed for the wake-up-in-the-nite with GLUE mouth situations tho.... It has helped keep my teeth healthier I think... My cavitiy and crown costs have dropped DRAMATICALLY due to this stuff. I mention it to the dental techs and they always go 'We always tell everyone about it!' HUH? Not one dental person has ever told me to use this stuff...ever. DUH.
Know too that the meds we take can do a number on our teeth. Pain meds and Neurotin, Lyrica or other seizure and anti-depressants do sap a lot of that calcium from you! Not to mention that your body isn't running on all four cylinders well anyhow? Mrs D's advice about taking calciums with Vit D, and Magnesiums are really key to keeping the tooth drill at bay.
Welcome to supplement CITY!
As for this being genetic? There isn't a lot of research done w/all of this, just as there's not been with a heap of neuropathy issues. Unless it's clearly diabetic, stroke or cancer induced there isn't a heap of research going on, nor will there be - those squeaky wheels get the grease. We benefit as an afterthought.
As for cheaper than testing? Again, DUH? And also WHA? Wouldn't testing be cheaper than a lifetime of inadequate meds and the side-effects they bring?
Maybe I can win the BIG lottery and make a difference - one can always hope. Hugs and hope to you good person! - j

[darlindeb25]

Ive been using the Biotene Oral Balance LIQUID..

I asked my sleep doc about using this and he said NO. Why? The man has sleep apnea too, he must have suffered dry mouth at one time or another. My dry mouth has gotten worse with the CPAP, but I had it before CPAP too. Dry eyes too, and now, I have lots of red lines in my eyes, I used to have such pretty dark brown eyes.

I am so tired of no real answers.

I hope you can find an active Sjorgen's group, I KNOW there is one out there and I know from reading Silverlady's experiences and having met in my neighborhood one so afflicted that it's miserable stuff. I truly do hope that isn't YOUR case tho

Me too, I don't want to be a member of this support group...I mean, how many support groups does one person need?

Did he mean three crackers, dry, without anything on them?

Yeah, he meant 3 dry crackers. I guess if you can't deal with 3 dry crackers, then you must have Sjogrens!!! I do not eat any crackers, I do not eat any grains. So, I can't do this test.

[Raglet]

I have sjogrens, along with my lupus and antiphospholipid syndrome. Treatment for sjogrens is mostly symptomatic (eye drops etc) so whether or not you have sjogrens (the blood tests will clinch that as there are antibodies that are used to dx sjogrens) then it makes sense to treat your symptoms.

It sounds like CPAP may well be playing a role in drying you out a lot as well.

best of luck with it all

raglet

[cyclelops]

My issues started with sicca syndrome.

I now have lip biopsy proven, seronegative sjogrens.

Depending on what material you read, sjogren's is blown off as dry eyes and mouth, or a systemic disease.

I would not rule out spondyloarthropathies coexisting with neuropathy. Sjogren's also comes with neuropathy. There is growing evidence that seronegative, biopsy +, Sjogrens is associated with neuropathy. Make sure they draw your 'complements.'

You may be seronegative, and depending on the doc, you will be told either you do have or do not have Sjogren's.

You can get a minor salivary gland biopsy. Mine is full of lymphocytes....It is such a mess, I don't think they have a focal score for it. I was shocked when my doc showed me the slide.

Sicca can come just from neuropathy which has affected the nerves that innervate those organs, however, you won't have the lymphocytic infiltration, which is inflammatory.

I would pursue this.

Also, it is probably possible that the CPAP is drying your mouth and nose....some mask leakage would dry the eyes too, or it can be pushing up air thru your nasolacrimal duct which terminates in the inner canthus of the eye in a little hole. Can they humidify the CPAP?

[darlindeb25]

Yes, my CPAP has a humidifier, and I have it running on the highest setting, per doctor's order. Yes, the dryness has gotten worse since having the CPAP, yet it was there long before I was diagnosed with sleep apnea. I was diagnosed with dry eyes well over 2 years ago. The dry mouth and throat started last winter, I have only had the CPAP for 4 months. Difficulty swallowing some foods has been going on for years. This was happening before I was gluten free, over 8 yrs ago. It had happened much less, until CPAP, now it's back.

I had the blood work done today, we will see what the results are, and go from there.

[echoes long ago]

i found my mouth getting very dry while using the nose pillows for the cpap machine. since switching to the mask that covers both the nose and mouth i have not had a problem with dry mouth. Its unbelievable how dry your mouth can get. what a feeling to wake up to.

[darlindeb25]

i found my mouth getting very dry while using the nose pillows for the cpap machine. since switching to the mask that covers both the nose and mouth i have not had a problem with dry mouth. Its unbelievable how dry your mouth can get. what a feeling to wake up to.

Echoes long ago...I'm sorry we get to share this too! I do believe the CPAP is making it worse, along with the fact, I do not think I have the proper CPAP to begin with. I did have the dry mouth before CPAP though, much worse in the winter. I much prefer the nasal pillows, I had a terrible time with the nasal mask, and I'm sure I would fight with the full face mask. I hate anything touching me, and the nasal mask hurt my face. Besides, I am a side sleeper, and it's so hard to keep them from leaking! By the way, the nasal pillows do not cause a leak to your eyes, I do much prefer this mask.

Two of my sons are doing so well with their CPAP's, and both prefer the full face mask...of course, they have more face for it to fit on. As my sleep doc says...anyone with sleep apnea is equal, even though some are worse than others, he hates the mild, moderate, and severe range labeling. Both my sons are severe, I fall under the mild range, but have low oxygen levels and insomnia.

Have they ever connected sleep apnea to neuropathy?

[echoes long ago]

for me no, but the pulmonary doctor is sure it is linked to my exposure related problems.