Undiagnosed auto immune disease

Posted by lisabeans @lisabeans, Feb 13, 2017

I have auto immune issues but am still undiagnosed. I have joint and muscle pains sometimes to the point that holding my son’s hand hurts. I have sensitivity to light and sun where I get very dizzy, nauseous and my face gets red on my cheeks and nose. I have an positive ana 1:160 homogenious. My rheumy started me on plaquanil and it worked okay but still has a lot of pain. Then tried sulfasalazine but my liver count went through the roof so we stopped that. Methotrexate made me very sick so now I am on Leflunomide. That has helped a bit but still have burning pains and my face is still red. I am seeing a new rheumotolgist in May while still seeing the guy I have been seeing. I do have ulcerative colitis which is in remission. I also have dry eye and get mouth sores. I am so confused (going on 2 years trying to get diagnosed). Any one else have similar symptoms and were diagnosed? I feel so lost.

My Heart , Thoughts and Prayers go out to you with the Lyme Disease! This last year coming down with it was the hardest year of my Life! It was hard to keep a "Positive Attitude" living with it every day! If you can only afford your local medical industry it is very Frustrating going from Dept. to Dept. in the hospital structure with no one willing to help. (One good thing that came of it was finding I had an 80% blockage in the artery in my neck. Working on having it removed after the first of the year)
I was lucky to have an "Old Time" doctor to work with me on easing some of my pain. The fatigue the joint pain, the mental fog and many other symptoms were still there. But the 24/7 headaches were controlled.
Like many others I woke up one day and my physical strength and other symptoms were gone! But as we all know once you have Lyme it never leaves your body!
There are several good web sites that give you very helpful info on how to live through it.
Rest is the Biggest! I still try every day, no matter how good I feel try and take a nap. It refreshes you and gives you that little bit energy to enjoy the rest of the day.
Keep doing research and learning about Lyme. If nothing else it helps you know you are not Crazy as others are suffering through the same thing. You will also pick up bits and pecies of things that may help you.
PEACE!
SUNDANCE(RB)

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Hi @lisabeans I, too, went undiagnosed for months. We finally went to the university hospital and the doctors there knew exactly what was going on. I get treatment locally but it is all determined by the doctors at UCHealth. Long story, but I’m wondering if you’ve been able to get to a large medical center or university hospital?

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I did go to the university of Penn but wasn't happy with them. I found a local rheumatologist and finally have gotten diagnosed with RA and fibromyalgia. He ran a special blood test (vercta d) which showed inflammation and is used for RA.

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@cmtg

I have aches I my joints, dry mouth and eyes, abdominal pain , ear aches nausea sores in mouth, psoriasis on scalp.

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Dry mouth and eyes could be sjogrens. Aches in joints is a common ailment, a lot of problems have that.

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