My pcp original dx was lupus due to PGL on the left side and symptoms at the time. Biopsy came back inflammatory. ANA was positive. But meds (mostly presidone) didn't help. Lost insurance so treatment stopped. Began to have several GI flare ups. Got insurance back. Had upper and lower scope. Came back postive for inflammation in the left colon and EoE. Was told it was due to stomach acid and given an otc antacid even though I have had no heartburn or symptoms. No improvement. Still struggling to swallow foods.

But now I'm back into a flare cycle. I'm physically exhausted. Headaches. Fever. Left sided weakness and cognitively not there. But these flares always start with these bumps on my knuckles. Non-itchy but painful bumps. I am far more clumsy and my foot dragging is getting worse. Only pain I have is spasms in my neck, headache and sporadic stomach pain due to either swallowing or diarreah. The only reason I maintain my weight is because I force myself a high calorie and fat diet or I'd lose a lot of weight and become sicker.

Is there something specifically I need to be demanding from my PCPs and GI team? I can't get into Neuro until end of August. I'm frustrated with the lack of care I get because I have public insurance.

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