Okay so I have started a symptom journal and I have been able to identify a few triggers, I just started the journal. I have been discussing with others in the chronic illness community and doing research and getting tests and seeing doctors.
But it seems I am making progress. Likely what is going on with me is MCAS (mast cell activation syndrome) with some sort of dystanomia on top of that (small fiber neuropathy likely).
Now that I have narrowed it down I can have a better idea of what specialists to see. I have a neurologist appointment in February and am going to get a referral for a geneticist from my PCP. I am going to keep filling in the symptoms tracker journal and hopefully have useful data to bring to my appointment.
I am glad to finally be making some progress in figuring it out but also it sucks because I was hoping it wasn't MCAS but the more I move forward the more convinced I am that it is.
And then the small fiber neuropathy or some type of ANS dysfunction or dystanomia is likely happening in addition. So hopefully next year will bring some answers as I have a bunch of appointments and tests set up already.
It's progress. My health continues to grow worse and I am in bed 80-90% of the time anymore because of the horrific pain and symptoms. But I am closer to getting answers hopefully.
At least you are making progress in figuring out what you have. Hopefully they can give you some good treatments that will help! Sorry that you are not able to get up from bed 80-90% of the time anymore, but hopefully you are able to recover with enough rest. Maybe you should consider living with your parents again while you are going through this?
@JustMegawatt I cannot and will not recover. There is no recovery from what I have it cannot be rehabilitated. My situation is extremely complex as I have multiple conditions all layered on top of each other. I cannot recover with rest. If they can find treatment or medication it will be to slightly improve my quality of life but I will still be suffering to the point of hardly being able to function. There is no easy solution for me unfortunately otherwise it would have already been solved if that was the case. My parents cannot take me in because they still have 4 of my siblings who are under 18 living at home that they need to support and they aren't rich by any means.The thing is I am going to talk to my PCP about options like something like hospice but for young people or people without terminal diagnoses because I literally cannot function I am having a hard time eating and can barely get enough nutrients in me no matter how hard I try. I appreciate you trying to be encouraging and helpful though, there isn't much anyone can do at this point. I just mostly need to vent with these posts and don't really need solutions because there isn't anything anyone can suggest at this point that I haven't already thought of :) But I do appreciate it, thank you
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