Rethinking it

[SJ19]

Hi! I essentially diagnosed myself with Sjogren's a couple years ago, though a young Chinese doctor actually first told me it was a possibility (I live in China).  After she then conducted a few blood tests which did not come up positive, perplexed, she took me into her middle-aged boss who laughed us out of the office (not realizing that I could understand him), telling her that she should send me to the traditional Chinese medicine hospital for old women's complaints, and that was that.  Where I live there are no credible specialists in auto-immune diseases--my good doctor friends have all told me that.  This didn't daunt me--I then did the unthinkable--went to a doctor in the States while on holiday (I only have Chinese medical insurance)--and had to pay and arm and leg for a short-term insurance, just to get any credible doctor to look at me--and ended up paying hundreds of dollars in tests that cost next to nothing here in China--only to be told by a doctor there that since the blood tests didn't show auto-immune markers he couldn't diagnose me with that and I could try again in a year or so, and maybe I was just getting old. 

I still believed I had Sjogren's because I have all the symptoms, but am now re-thinking a little and perhaps someone who knows can think with me.  The thing about my symptoms is that they change daily --nothing is static and none of it is very extreme, leading me to believe I have secondary Sjogren's. However, there do seem to be flairs--several days one way and suddenly one day another way, etc. 

My symptoms:  - Dry mouth--mostly noticeable at night when I'll wake up with my mouth dry and spray some biotene in it, then it's usually okay till morning, but sometimes need twice--and sometimes days go when I need none.  Not so much in the day, but it will sometimes suddenly come upon me--enough that I keep some biotene handy if it happens in the middle of teaching a class.
- Dry eyes--confirmed by my eye doctor here who gives me drop prescriptions.  Sometimes I'll wake in the morning and they will feel super dry and I'll put in drops--but generally okay then for the rest of the day, or not noticeable anyway. 
- Dry nose and nasal passages--this is happening more now than before--so sometimes at night I'll put in Vics.
- Dry bum--just sometimes and suddenly I'll feel it--but not often and it doesn't last long--maybe half a day if that, that I'll feel it.
- Eye sensitivity to light.  Never had this much before and I've lived in the tropics around the world for years and years and never wore sunglasses.  Now I need them, but some days more than others.  Sometimes even home lights at night will bother me.  The only sensitivity I had in my past was a bit of night blindness in the face of lights at night.
-  De Quervaines Syndrome in the wrist that I had no idea was related until one day when I was reading about it's causes, Sjogren's was listed at the bottom of the list!  I'm over the worst of it, but do often get twinges and am, therefore rather careful with it--now starting to feel twinges in my other wrist.
-  Arthritic pains--very mild, quite livable now and guess I should be happy for that at the age of 64.  In my hip--sometimes it can stay for a month, others for a day, and then months with nothing.  I have recently noticed that if in cold weather I really protect the area from cold at night by wearing a shawl around my waist, I don't get it.
-  At one point, for a couple months, a couple years ago--a pain in the ball of my right foot.
- Dry tips of my fingers
- Dry skin and very dry hair now
- Don't know if it's related--sometimes a light red rash in the palm of my hands--it itches, but not much and doesn't break or turn scaly--just comes and goes--doesn't feel related to dryness.  It feels like it's under my skin.
- Dry patches in specific places on my skin--like strangely, on my right upper arm and shoulder--stays for a couple of days and then gone
- Sometimes a red rash on my chest--no itching, don't feel anything at all--it's just there! Goes away in a few hours or minutes
- Don't know if it's related--it seems like sores or burning in my throat, sometimes for days, even lose my voice occasionally.  Haven't had it much for a year or so, but it does come sometimes.
- Much more  susceptable to gum infections

Think there's more, but can't remember now.

So, aside from the last, this seems to be a pretty convincing list of Sjogren's symptoms, don't you think?  Can it be possible that it isn't?  I just had blood tests taken again, and still no auto-immune markers (think it's the forth try)!  Can this just be getting old symptoms?  That's what the American doctor suggested--like drying out old...?

[Navigator]

Autoimmune diseases can be very hard to diagnose. SJS in particular can take years before it is diagnosed since the symptoms in many cases can mimic (in women anyway) reactions to the natural loss of estrogen.   There is a foundation, the Sjogrens Foundation, which has undertaken to fund research to improve diagnoses.  You might look at their website.   If you had mentioned that you had symptoms of neuropathy that would be more worrisome, muscle pain and tingling in the extremities that comes and goes periodically.

[SJ19]

Thanks so much for your kind reply--I didn't realize anyone had responded. 

Muscle pain...  I've got a persistent pain, that seems like muscle pain,  that comes in the middle of my back near my right shoulder blade whenever I do work in the kitchen more than 20 to 30 minutes,  I only have tingling of the extremities when I sit on my legs too long or have my arms raised above my head while sleeping.  Could I ask why that would be worrisome?  I guess I should also google natural loss of estrogen!

Thanks again!

[SjoDry]

SJ19,

I sent you a private message with some information.

Take care.
SjoDry

[bluegardenia]

if u want to be sure why dont u make a biopsy of  salivary glands? if i had not done that they would have  told me that im just aging ...and still after the slightly (??) positive of my second salivary biopsy( first one was negative) someone says that its not sure i have it...