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Sjogren's Syndrome
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Posted 10/13/2011 5:53 PM (GMT 0)
Just got one of the worst phone messages (and of course it was left on my cell phone 2 days ago, didn't call the house phone----- I don't feel well! I'm at home most of the time!), and I am so depressed... totally feel like giving up.

All my tests were normal. Sjogren's stuff, other stuff, chest xray.... and the dr didn't have the respect for me to call my home phone. So frustrated that once again I have nothing to show for seeing a doctor.... and having so much blood taken it took me 2 days to recover! And angry this dr thought it would be acceptable to leave the results in a voice message on my cell phone. Would have much preferred if she'd called my home phone, left a message she needed to talk to me, then I called her back and we talked about things. But I'm not going to waste more of my time by calling her back, since she's obviously not a good, compassionate dr to be working with.

So, I still have no answers for why my eyes have been so dry the agony has kept me from falling asleep, why my mouth always feels dry even when I've drunk enough water that my urine is clear, why my hands and feet are numb, why I cannot sleep well because I'm tossing and turning all night because of the joint pain, why I have strange skin rashes and low grade fevers. Once again, I'm still sick and have no idea how to get better.

My primary care provider called (also left a message on my bloody cell phone first!, but at least they called my house phone today) and wants to see me. Thing is, I don't really want to see any dr right now, even though I do have 2 NEW things going on!

I'm sick. I'm tired of not knowing why, and right now I hate drs.

Giving up on drs isn't going to help me get better, but I am so tired of the humiliation, frustration, anger and depression that follow a dr visit.
Posted 10/17/2011 3:00 AM (GMT 0)
Don't give up, what the doctor's don't tell you is you can still have sjogren's even if your blood tests are normal.
Mine we're like that too, but my RA Doctor has it in his files as sjogren's...
Look for a better RA Doctor...ask around...look online, but get another RA Doctor
you deserve better care....all my blood work was normal as well but then my hand mri came up and showed
RA damage in my joints, and that form is called sero-negative arthritis, so you can still
have an autoimmunine disease even if your bloodwork is normal, keep pushing and get a better
more compassionate doctor...
Many well wishes to you...and keep us posted as to how your doing we do care...
Google: Sero-negative Arthritis
Posted 10/19/2011 7:34 PM (GMT 0)
Could be the supplements...interfering with your lab work, I'm glad you have
an action plan and good luck on Friday...Keep us posted on that...
The supplements will help with the pain but only RA medicines will help keep the joints from
any further damage...that's the goal of the RA medicines...so maybe your doc will
first start you with plaquernil and then MTX and maybe other meds such as humira ect....
Keep us posted as to how things go on Friday...will be thinking of you and sending well wishes...
Posted 10/20/2011 10:11 PM (GMT 0)
I hope your breathing improves, I'm on nebulizer treatments right now, every 8 hours as needed...
Hope you don't need that....many well wishes to you...and remember to keep us posted about tomorrow...
Posted 10/30/2011 4:40 PM (GMT 0)
With scarring on your lungs maybe the better doctor for that would be a lung doctor or pulmonary doctor
to get better help, then seek out a better PCP & RA doctor...
Sorry about the lung problems, hope with the right doctor maybe that can get reversed
or helped with medicines...
Keep us posted on that...
Posted 1/6/2012 8:38 PM (GMT 0)
Hey there, sorry you are having so many problems. I think that all of us have probably gone through similar situations during our quest for the right doctors. I know I had my share of non-believers, went through so much therapy, and finally found doctors that would listen and talk to me and not at me.

One thing you mentioned on one of your posts was that your hands turn colors when they are cold. Black? Blue? Have you talked to anyone about Raynauds? I have a friend that was diagnosed with Raynauds when she went to her doctor and her hands were very dark and kinda blue. I don't know much about it but you might want to show up when there is some outward evidence...and btw...everyone is right. You don't have to have conclusive blood tests to be positive for a disease. Before they finally settled on Sjrogrens , one doctor said Lupus, one says sjrogrens.... both have valid points when you read all the lit. but who knows which one or both is correct. The treatment for one is the same as the other, they just have to look for different risk factors which they do anyway every 6 months in bloodwork and exams. So, don't get down, take your time and find the doctor you believe you can work with and will work with you.

Take care.

stephani

Posted 1/8/2012 2:41 AM (GMT 0)
Sounds like getting a second opinion is the right thing to do -- one should never have to plead with a doctor for treatment!
Posted 1/8/2012 4:26 AM (GMT 0)
You might want to look at www.lupus.org, find the local chapter, then find their website. There will be a list of people on their advisory board -- usually the most experienced Drs in your area will be on this board -- that's where I picked my dr from. If they have support group meetings, those are great places to hear different people's opinions about the doctors in your area.

Truthfully, your list of symptoms isn't so different that many of us who end up with a diagnosis for some kind of inflammatory disease. For instance, primary Lupus with secondary Sjogren's and secondary Renauds covers your symptoms (and that's my dx!).

Best wishes,
Posted 3/20/2012 2:07 AM (GMT 0)
Hi Sayyadina,
I really feel for you right now. I was also tested for Sjogren's as well as a whole panel of autoimmune disorders that came back normal. I have Sjogren's in my family history and have been experiencing extremely dry eyes and mouth as well as circulation problems. Despite the negative test, my ophthalmologist decided to put tear duct plugs in my eyes to help with the extreme dryness. It seem to help a little. Might be an option for you. I also took a tip from my opera singing friend and drink coconut water to keep my mouth hydrated. Works better than water. It's very frustrating to subject yourself to multiple, sometimes invasive, medical tests and have the doctor tell you your normal even though you know something is wrong. I have also had problems with Raynauld's since I was young and despite several tests for celiac, cannot eat gluten without getting very sick. I'm beginning to think these tests were not made for my body and today the Rhematologist told me it's a neuro problem, he can't help me. From my experience, doctors do not want to take the time to engage in differential diagnosis and just let the tests give them all the answers. I even tried doctors who are suppose to be the best in rhematology here in NYC and was disappointed. It can be extremely frustrating. I hope you find a new doctor that can be more helpful.

Rebecca
Posted 4/21/2012 4:08 AM (GMT 0)
Puzzled with Pain,
I can relate to the lack of doctors who take time to "engage in differential diagnosis"!!!! Sadly there is such a lack of doctors who are intelligent diagnosticians. What's even worse is that when they come to the end of their knowledge base, their default answer is "see neuro."
Posted 7/14/2012 10:33 PM (GMT 0)
Hi Sayyadina, You are already fighting the enemy within. You need a new Rhuematologist that will work with you . I take 4 500mg Turmeric Curcumin, 3 Mega Primrose 1300mg and 4 fish oil 1000mg ea. This totally negates the positives on all my tests. It also lowers my pain level from a 6-8 to a 2-4. If you need confirmation for insurance or benefits you will most likely have to quit the supplements for almost 2 weeks. I can't imagine doing this, but we do what we have to do. Remember, not to take aspirin, it lowers your GLA and allows your ANA to go nuts. Find an anti inflammatory the is aspirin free. Good Luck, I no how frustrating it can be. Try to focus on all the wonderful things that you enjoy doing now and in the past. Life is worth living, even when we have to make the best of it.
Posted 7/18/2012 5:56 PM (GMT 0)
Have you dried to be dairy and gluten free? This will not change your test results and helps to lower the pain. I also take Hyaluronic Joint Complex by Source Natural 1 tablet 4x's a day. This will help with the joint pain without changing the results.

Managing your pain is a challenge and not everything that works for me will work for everyone else. When the pain get to the 6-8 level I try to lay down and put myself at the ocean and listening to the surf or in the middle of the woods enjoy the energy of the redwood trees. It all helps, because is you can relax to the pain, it will be considerably less.

See yourself well and on the good side of things. I know sometimes it is hard. Try not to let this stuff control you, show it that you are in control. You can do amazing things with your mind.
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