Anyone with these symptoms?

Besides the drymouth, I have a very bad metallic taste in my mouth on and off through the day. If I swallow too much, while experiencing this metallic taste, I get mild, nauseating chest pain that radiates down my arm. My blood pressure is unstable too. An E.N.T. told me these things is atypical of Sjogrens, and that something else is happening. But all my cardiac tests have been negative.

Have you spoken to your rheumatologist about these? People with Sjögren’s can have different types of neuropathy, including autonomic neuropathy. Now that you’ve been cleared by the cardiologist, I’m wondering if you should pursue this with your rheumatologist and/or a savvy neurologist.

I really lucked out with the neurologist that I’m seeing. His wife also has an autoimmune illness, so he understands some of what I talk about, including my reluctance to have testing done unless it changes my treatment in some way.

I agree with Stoney. I have a form of neuropathy from Sjogren’s too. This disease can do weird things and unfortunately a lot of doctors aren’t fully versed in it. Even the eye doc that caught mine had no idea that it did anything beyond dry eyes and some joint pain. I have educated him a lot over the last few years. It helps to take a further look and get to the bottom of any new symptom.

Doctors are not infallible. Keep asking questions and don’t be afraid to ask for a second opinion if you don’t think the doctor is right or if you are not comfortable with the information you are being given. It is your body after all and you have to live with these decisions in the long run, not the doctors.

Thanks. I will find a rheumatologist. Small town. Very few providers.

I have been experiencing the metallic taste as well. I take Lunesta for sleep sometimes, and it leaves a metallic taste as well, so I thought that might be it, but also though it odd that it lasted all day. Now it is gone after experiencing it for a couple of weeks! That’s Sjogrens alright… You never know what its going to throw at you!

Update…I’ve been diagnosed with advanced Lyme disease. Heavy duty ABX treatment (seven drugs over the past two months) got rid of the cardiac symptoms and unstable BP, but I still have severe dry mouth, a numb face, and very,very tired all the time. Over the past 21 months, I’ve been told I had an infection destroying my jaw, Sjogrens, cardiac damage, brain tumor, and now Lyme. I’ve been through the ringer.

That’s great news that you’ve had some improvement.

This sounds like it’s been a full time job for you, dealing with your health concerns.

Check this article:

Hope you find answers. Take care.

Thank you Arlene. My best to you too. Lot of good people at these support groups. I hope I can reciprocate.

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You’re right. Dealing with a difficult health problem can be a full time job… My prayers to all those who offered their support or advice.