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Im writing this because im pretty frustrated at this point.
I feel like ive seen so many experts and they just do their tests, conclude that im healthy from what they can tell (no diagnosis) and they sent me my way. At first i didnt mind, because i been sent to certain professionals that i had a gut feeling is going to be a waste of time but i went because of exclusion protocol.Now im down the line and so far no one found anything. So im left feeling really pessimistic about this.
I dont think i should conclude i have CFS just yet, im still considering autoimmune issues or some weird issue with my mitochondria. However, i feel like people who went through all of the diagnostics to end up being diagnosed with CFS may have more experience and knowledge with the issue perse.
Short story.
I thought it was iron deficiency, easy fix right? Well now that my iron is well and my symptoms persist, i have no clue wtf is wrong with me. I have very high CRP, and it keeps raising. I have low albumin. I have leukozytes and other inflammation markers, but all the tests done did not find any source, no sign for viral or bacterial infection either. Some haematoglobin stuff was off but again nothing to diagnose me with. I never had covid that i know of, and the issues began back in 2016. I never had any infections that would have knocked me down cold, i generally am never sick (not even with a flu) and i never had any major health issues prior. It began with weight gain and then progressive fatigue.
So many tests were done and of course im happy that all these doctors say im very healthy, very healthy for my age, very healthy for my weight (which imo is a symptom) and they basically praise my "super healthy body". But this body is not healthy its limiting and honestly debilitating.
I am so weak i cant exercise, i can barely function as a normal person in my private life and im barely BARELY managing work. Im worried where this is going to progress to. And i have zero hope for improvement. Whenever i do anything physically straining i feel so extremely tired, it clouds my mind and forces me to close my eyes and want to go to bed asap. My muscles start to tremble and eventually they give up. If i push myself i get a headache or migraine.
I have no clue wtf is wrong and i have no clue what doctor to go to next.
I did try to find an expert for dysautonomia, however, im waiting for a reply and honestly i also dont think it sounds all that fitting because standing only causes issues if im standing for hours. I dont know. Im gathering ideas because as you surely know, it takes months to see an expert so i need to make the phone calls now.
Any ideas? Who would look at my mitochondria? Whats a medical expert called who does that? Immunology is on my to-do list too for autoimmune issues, even tho a few were already excluded like lupus and athritis and some others.
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- 1 year ago
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