Hello everyone, first of all I want to thank everyone who has helped with my health situation over my gofundme. I wanted to tell how things has been doing, and since journals are harder to see, I thought of making a submission instead.
What has been found?
Short version: The good news is that some of my test has shown positive results and I dont need extra medication for the time being. (I still need my usual meds). With the exception of Dupilumab but is unrealistic I can pay it. More details below. The bad news is that my current situation needs tons of treatment and some is still unknown on whats going on.
Detailed version:
My "general malaise" is still unknown. I have described this feeling as if someone put "dirty water" in my blood at random times, and like if my skin or body had a sensation of "goosebumps" that never comes, similar to licking a small battery, but rather than just the tongue, it feels in all the body. I also have mentioned to doctors I feel my tongue as if I put it in hot water at random times.
The first suspected culprit is my Hyper IGE. I cannot fix it easily because the medication needed (Dupilumab/Dupixent) is extremely expensive, so I cannot get it through money, as I would need it for life and the dosage is monthly. So I'm trying to get into a program where I can get it for free, but it may take multiple months and may fail, so thats still an unknown outcome.
The second suspected culprit is my Addrenal Insuficiency. Caused by the medicine I used to treat symptoms for the Hyper IGE, (Prednisone). Because of that my body kind of broke and provokes a lot of unspecified symtpoms sometimes, my endocrinologist says some of the symptoms I describe match with my insuficiency, but some don't. Regardless we will attempt to wake up my adrenal glands by reducing the medicine slowly. This is kind of a risk since if I dont take my medicine even for 1 day it can put me in fatal danger, so we will attempt to reduce it very slowly and check my glands react again, otherwise I'll be stuck with Prednisone for life too.
The other culprits was suspecting of MCAS, but blood test came out negative, so that's not it. I also took general blood tests and other exams and they didn't show anything revealing aside from some small adjustments.
There is another 2 which I havent been able to do since doctors wants to discard in certain order. One is doing a Magnetic Ressonance, I didn't had this test in consideration and is kind of expensive, so I'm trying to decide if using the remaining funds here or keep the funds for medicine supplies for another 2-3 months. One of my doctors didnt really think one of those tests will show anything but there is no way to know without doing it.
The other is Dysautonomia, but I got told to hold it until I discard everything else since the tests available are mostly heart related (which according to my Cardiologist, Im ok at the moment after some exams like Holther and heart monitoring) and I haven't fainted or such, so it may not show anything yet. But like the above, cannot be sure until I try.
Lastly, I went to a psyquiatrist since multiple of my doctors suspected of severe anxiety attacks and stress causing my malaise, I attempted to try Sertraline, but things didn't go smoothly, at the seventh day I felt my mind "completely wrong", it was pretty bad so I got told to stop taking it. In the end I ended up with Alprazolam which I already had for anxiety spikes and got sent to "cognitive behavioral therapy", which I'll start soon.
I still have some funds left but is difficult to decide if using it in a test with low chances of showing something or keep it for my medicine supplies, is annoying to admit it but I do still need help, if you want to keep supporting me for my health treatment you can do it in my gofundme. I'm trying to cover the funds wiht my income too but all of this is like finding a needle in a haystack and cannot cover everything.
As for my asthma, this is the condition that is mostly under control, I need 3 inhalers but can't complain as long my lungs works properly ^^u
Again, thank you for all your help, without your support I wouldn't have been able to do all these health examns, research and medicine supply. And even if I haven't been able to fix it, I made a lot of progress.
I'll update again once I know more.
Currently I'm struggling with health, if you are willing to help you can donate to help me cover my medicine expenses, Thank you:https://gofund.me/6b07adda5 If you like my art, consider supporting me over Subscribestar: https://subscribestar.adult/dm-team
im more worried about you, and that comment was not to take away from your situation, it was simply to tell you that i know how you feel, and i am here for you
im more worried about you, and that comment was not to take away from your situation, it was simply
I'm super sorry you're dealing with this. My sister had a histamine sensitivity that mimicked MCAS and a few other conditions. Maybe an allergy test, or a mold toxicity test should be done? Histamine sensitivity causes flue-like symptoms an flushing. Mold can cause general malaise and be hard to diagnose without actually finding mold. Best of luck friend! Your comics are some of my favorites ad helped awake part of me i didn't know was there.
I'm super sorry you're dealing with this. My sister had a histamine sensitivity that mimicked MCAS a
I've been also suspecting about the histamine. My allergologist gave me Fexofenadine 180mg to see if the symptoms are lowered when it spikes, but is still not clear at all. Is probably a combination of multiple things.
I've been also suspecting about the histamine. My allergologist gave me Fexofenadine 180mg to see if
*hugs* sorry to hear all you're going through, hopefully the cognitive behavioral therapy goes well for you & your health improves, if you need any help or advice you know we are all here for you
*hugs* sorry to hear all you're going through, hopefully the cognitive behavioral therapy goes well
Hope you can find the right treatment that works for you, I also have some autoimmune problems eating me away and know how difficult it can be to get help while our bodies attack ourselves.
Hope you can find the right treatment that works for you, I also have some autoimmune problems eatin
