u/Separate-Freedom-548

So back in 2010 I was having constant prostatitis issues(i was 25 then)/weird muscle spasms/burning tongue/odd headaches/swelling in my throat that made it so I couldn't burp as well as swelling in my colon that made it hard to even pass gas. After running tons of tests over the course of a year and not being able to find anything wrong other than slightly high bilirubin levels(which they said was odd the rest of liver function was fine) they thought it was autoimmune related. Over that year I had just come to live with the symptoms and they eventually decreased to where they pretty much went away for the next 15 years with the odd symptom here or there.

Cut to October 2025 I start working out at the gym and drinking lots of protein shakes. One night an hour after getting home my feet start to swell and burn. I'm prescribed daily klonopin which I took because it freaked me out and it went right away. A few weeks later I take Tylenol and it does the same to my feet, klonopin works again. Few weeks later my daily klonopin dose itself triggers it in my hands and feet. I go to the ER, they prescribed gabapentin which only makes it worse. Also the saline IV burned really bad which I'd never had that reaction before. I tried taking ibuprofen which made my eyes swell up(plus feet burn) and this glob of orangeish mucis go down my throat into my mouth which burned the inside of my mouth so spit it out. I go back to ER they prescribe extra strength aleve which works to stop the burning(aleve inhibits Interleukin-6 (IL-6), Interleukin-1β (IL-1β), and Tumor Necrosis Factor-alpha (TNF-α)) but still makes my feet swell. The aleve is working and I see my PCP who runs all types of tests everything normal, no HIV/HEPC and refers me to a neurologist appt 10 months away. This whole time aleve is keeping away the burning sensations but im chronically fatigued. I'm having an increased appetite eating more than ever in my life yet losing weight while basically being bed ridden(luckily I own my own business and can do everything I need from bed.) I start experiencing the issue with burping and bowel movements because it feels so swollen. The aleve works for about 2onths than it too starts causing the burning. Now even basic food is setting things off. The first of one of these flair ups causes the burning and also where I had the IV in at the ER opened up under the skin and burning fluid leaked out under the skin. I do a bunch of research and come across AI/Mast Cell issues. I go back to the ER try to show them info from the mayo/cleveland clinic which they refuse to even look at and they diagnose me with dermatitis. I tried weening and stopping the klonopin altogether but this only sets things off worse. I'm 6'1 normally 175, I'm now at 118. But things continue to spiral to where I get terrible exczama, the burning continues, I start feeling like a low energy current is running through my legs and up my body. I get temperature regulation problems in weird spots, like just one arm. Have trouble sleeping. My saliva/tears are greasy and discolored/burn my mouth so I have a spit cup for that. I've been back to pcp and er multiple times where I try to show them info on MCAS and they won't look at it and told me even if I was right they couldn't treat it. I'm like ok well can you not fast track me to the correct specialist, I'm dying here. They refer me to a rheumatologist again with appt in 2027. So I go on zocdoc looking for the first immunologist or rheumatologist with an open appt. I do telehealth and go into much further detail about my symptoms and I let him lead and explain what the likely causes are to prove to myself I'm not confirming my own bias and he explains the histamine and cytokine reactions just like I thought and that the klonopin, aleve and prednisone(forgot to mention that worked until last dose massively caused a flair) worked for a while because the receptor sites themselves were being attacked which caused them to stop helping and start causing. Anyway im at the point now where even chewing food makes my gums swell momentarily and then my throat and then causes burning/low intensity electric vibrating in my gut. The skin in my mouth/throat comes off and I'm constantly spitting out this greasy burning bloody saliva. It gets to the point I get flu like symptoms and can't stay awake. I've resigned myself to the fact this is going to kill me, I just wish ONE of these doctors had taken me serious in the beginning when treatment might have worked. Is there any sense in going back to the hospital where they are going to want to put me through all types of painful procedures and treat me like I'm crazy for not wanting another saline iv/take some symptom med that I know is only going to increase my agony not help it? Or let nature take its course in the comfort of my home with my family?