← Return to Autoimmune? Undiagnosed and don’t know where to go next

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@shellieaxton

I have tested positive for Autoimmune Disease. However I have no idea which one. I have been tested for many different kinds but no answers. First it was Sjogrens, maybe Lupus, maybe this maybe that. Now I have started getting fluid filled bumps on my scalp that won't go away.
Has anyone else had this situation? Not being able to determine what the disease is.

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Replies to "I have tested positive for Autoimmune Disease. However I have no idea which one. I have..."

@shelliexton Welcome to connect We share our experience about our disease and what we can help you with. OUr group is a caring group and if you want to vent you can and feel safe here . I cant address the bumps on your head but has your Dr taken a biopsy of them? Do you have any underlying disease that you have been diagnosed with ? Has your Dr done a complete work up on you to see if he can find anything? I think this is where I would start with your Dr running these test . Good luck Let us know how you are doing and if you just want to talk we will listen

@shellieaxton May I add my welcome, also! We are not doctors, and cannot diagnose, but we do offer support, encouragement, and our own experiences as we all navigate our health journeys.
I can relate my experience to a diagnosis of Systemic Lupus, way back in 1988! As a dr explained to me, they started with a blood test, looked at results and values, then determined which test to do next, to narrow down what was going on with me. They factored in physical signs and symptoms. It is my understanding that autoimmune conditions can mimic other things, so they had to eliminate them one by one. This might be the phase you are going through.
May I suggest that you keep a journal of sorts, to write down different things you observe, like the bumps on your scalp. Note day, time, environment, pain/discomfort level. Remember, by the time you get back to dr, that symptom may not be present for him/her to observe. Details are a good thing.
Please come back and let us know how you are doing. What gives you relief right now from the bumps on your head, or overall discomfort?
Ginger

Hi @shellieaxton, I would like to add my welcome to Connect along with @colleenyoung and other members. You might be interested in some information recently shared by @sundance6 about Lyme disease in the post directly above this one.

Hello @shellieaxton . I can just imagine how frustrating not knowing must be. @gingerw has given some good advice about making a list. Are you seeing a rheumatologist? What symptoms prompted you to see a doctor? I started having symptoms months before I got a diagnosis. I finally begged for an MRI because I thought I was having a stroke. No stroke, but I did have lesions on the brain. I finally got to a doctor at a university medical center. A neurologist knew exactly what it was and has been overseeing my care since. Just keep advocating for yourself! Call a medical center and say that you need a specialist. Course, now with Covid-19, things are going to be more difficult, but try anyway. And let me know what you learn