I am 32 and my sister is 38. I was officially diagnosed w/ Sjogrens back in the summer, right after having my second baby. I was mostly diagnosed on symptoms, as the only positive in my bloodwork was a 1:80 ANA (symptoms being the usual suspects of dry eye, mouth and skin, tingling in feet and legs, joint stiffness, fatigue).
Rewind 7 years ago when my sister had her second baby. During her postpartum time, she began experiencing major neuropathy - tingling everywhere, numbness,etc. She had a gazillion tests done - bloodwork, scans, neuro testing. She saw a neurologist and endocronologist, but never a rheumatologist. One of her docs did check her ANA, which was normal at the time. In all her tests, she found out she has tumors on her thyroid and adrenal glands. Her eyes are dry, but she says her mouth isn't. She always wears her glasses and rarely wears contacts.
Fast forward back to now, when I discovered my diagnosis... You'd think this would set off an alarm for her and she would go straight to a rheumatologist. And I think it did, as she conceeds that we "probably have the same thing". However, for some reason, she refuses to accept that it's sjogrens. She thinks hers is related to her endocrine system going haywire, rather than sjogrens. And she thinks that could be the problem for me too - and not sjogrens. In reality, I know exactly what is going on with her. Her immune system is what's going haywire, and it's setting off the cascade in all her other systems.
I don't have the heart to push the issue, as I know the reality is that she's probably terrified of the diagnosis. It is not one any of us want to have. So I have been waiting and hoping she will come around to acceptance, but it's not happening. She says she still has tingling in her feet and legs after all these years and that she just lives with it now.
It really bothers me that she won't acknowledge that we both have sjogrens. For one, I feel like she really should try to get treatment so that her problems don't progress as fast. I worry about her. And for two, what concerns me even more is - her daughter, my 8 year old niece, is having symptoms of AI disease. And my sister will NOT tell any of her daughter's doctors that I've been diagnosed and that she probably has it too. My niece's main symptoms are - migranes from being in the sun, and blood and protein in her urine: kidney problems.
So my niece is now going through a barage of testing and I asked my sister if she is having her ANA checked. My sister's response was - "I don't know what they're checking, they are just faxing the labslip over to quest and we are going to have it done". When I pushed the issue, she said "Honestly that thought never crossed my mind that it could be autoimmune, I mean I don't want to LET it cross my mind. I mean, I certainly hope that's not what it is". My response? "I'm sure that's not what it is". I wanted to comfort her and I also want to believe that too. So you see, my sister is in denial - and I would LIKE to be in denial.
I can't say I blame her. I have two boys. I worry about them CONSTANTLY. Any time one of them rubs their eyes, or their eyes look red, or their skin is dry, I have a mini-panic attack. But if they were having blatent symptoms like my niece, I'd be getting the AI testing done. I mean, if my niece's kidney problems and migranes are from her immune system, then they need to get her system in check.
All this is to say that I just don't know what to do. Any advice? Surely the docs will be smart enough to check for AI when an 8 year old is presenting with kidney problems and sun sensitivity???? Even IF my sister fails to mention her family's AI history?
PS - forgot to mention also that my sister's latest symptom is horrible, drenching night sweats every night for the last 8-12 months. This one has me especially concerned for her with the lymphoma risk.
I know you want to help her get proper care while acknowledging the potential sjogrens. My older sister also has some similar symptoms, but she has never been down the A1 road.
The truth is, she will come around if and when she's ready. That may be tomorrow, or in 5 years. I believe the best thing you can do is listen and be there for her.
Good luck,
KellyG
I think it hard for some people to admit even to themselves that something may be wrong medically. I know my husband is one of them. He has had high fasting blood a couple of times but he still won't consider that he may becoming diabetic. Both his mother and father were and so are two of his sisters. I've tried to help him eat better but I've had to back off because he's beginning to resent my interference.