Struggling to get a diagnosis to all my symptoms

Hi everyone!

I'm a new Sjogren's Syndrome Support member, who is struggling to get a diagnosis to my many symptoms and looking for support/advice/common bonds. I have hypothyroidism (diagnosed in the late 80's/early 90's but sure I've had longer) which is likely Hashimoto's but not officially diagnosed. My aunt has been, and I many symptoms of auto immune hypothyroidism. I've seen a DC who is specializing in endocrinology, who reviewed my blood tests over the years and based on the widely fluctuating results and changes in medication dosage she felt I did but wanted me to pay out of pocket for some major blood work (I have Kaiser), which I never had done.

I've been suspecting Sjogren's as I've had some of the symptoms for a few years. Mainly my eyes have been so dry and gritty, and very painful. At times they 'stick' where my vision is blurry and I can't focus. I've had two eye infections inside my lid (styes) in the last two months. I've been diagnosed with oral lichen planus and the ENT who diagnosed was surprised that my MD hadn't looked into a larger auto immune issue yet. That was about 2-3 years ago. I've had swollen salivary glands for 2-3 years, and was just officially diagnosed with that along with a partially blocked gland on one side. Other symptoms are extreme fatigue, with it worsening the last couple of months (lots of stress!); numbness and tingling in my extremities, face, head; pain in my jaw area, behind my ear, neck (soft tissue area), waking up with headaches every day that improve after I move around; dizziness, difficulty focusing; sometimes difficulty swallowing or speaking; constant tinnitus (buzzing, ringing swishing (have a venous malformation also) and a few times a day it moves to a high pitched buzzing. I get horrible cramps in my shin and top of feet, along with restless leg syndrome. Bedtime means increased pain all over, and my skin is so sensitive and uncomfortable. Also I have been sweating like a fiend at night, while during the day I am often cold even in a warm environment. I also have an enlarged lymph node in my abdomen that was too risky to biopsy so it's a 'wait and see' - can't say I have lymphoma but can't say I don't (surgeon's words).

There is more but those are my main symptoms. I've had so many tests for symptoms but I can't get my MD to put it all together. I finally gave her a 3 page list of my symptoms and am hoping she will give me a referral to endocrinology, rheumatology or ? I am considering going outside my insurance plan to see about getting diagnosed so any suggestions, ideas, etc are very welcome. I know this is a long post and thanks for reading. I'm so frustrated by this taking so many years while a diagnosis might help me start the road to getting better or at least treating the cause and not each symptom as it flares up. Last year I ran two half marathons, I'm a regular horse rider and work horse shows for my trainer. Although my activities aren't easy I was able to do them. This year i can barely get myself ready for work and out the door. I've recently added depression to the list and I'm not sure how to push myself out of that pit. Anyways, thanks again for letting me join the group while I'm still working on figuring this all out.

Dear Toni,

No wonder you're depressed, girlfriend, you need to get an accomplished Rheumatologist to have a look at you. How in the world can they ever hope to treat you, if they cannot diagnose you?

I am not really that familiar with Kaiser, I had always heard good things about them in the past, but I'd be calling someone about this! You should not have to go out of network or out of pocket care when you have this!

You know, I've learned that sometimes you can go a long way being nice, but you also have to be armed with knowledge, and you have to be stern and ask for better care! Then there are times when you really can't be nice at all!

I really think you need to get in touch with Kaiser and ask for a Rheumatologist! So sorry you are struggling so, we have gone through much of this, some have gone through all of this, so we really do 'get it'. Keep calling, and calling, and get what you need to get to a better place.

Beautiful horse by the way! Your are very lucky to have each other!

Wishing you well,


Toni, I am so sorry to hear you are suffering like that. I spent years being told that there was nothing wrong so I know how frustrating it can be. All of the symptoms you describe are the same as I deal with (except for the headaches). SK is totally right, you have to advocate for yourself. I know it gets tiring but it can be the only way to get to the bottom of things.

Sending you good thoughts and gentle hugs.