I have very severe me/cfs (98% bedbound), long covid, dysautonomia, pots, mcas, cci.
I’m sure my case has more structural issues linked to hypermobility, i just havent found the right doctors to help me.
I have severe neck pain, feeling i have no blood flow to my head, extreme tinnitus, pressure through my whole face, difficulty swollowing, breathing, feeling someone is constantly choking me. Lately i have also cracking and clicking sounds at the front from my trachea/hyoid bone. I’m really scared since i also live in a very abusive household and i’m all alone.
Is any of you in Greece? Do you know anyone here? i’m unable to travel.
This is urgent.
Is any of the doctors diagnosing virtually if you provide the imaging?
Katiana that is such a difficult situation for you to be in…we don’t have any doctors on our list in Greece I’m afraid. Some of the other doctors do phone/ video consults, but usually they would want to see copies of imaging first; what scans have you had done? Have you got anything you could send or otherwise upload on here, and we could have a look and give you some pointers as to what to look for?
I am so sorry that you live in an abusive household, and am very concerned about that, nobody should have to live like that- are there any refuges in your area, or domestic abuse helplines? If there’s nothing local are you able to contact this for help, it says you can email too: Domestic Violence in Greece: How to Seek Help Αρχική - #METOO Greece
Please contact them if you can, it’s obviously difficult if you’re bedbound, but at least you do have internet access…
sending you a hug
Oh Katiamek, my heart is going out to you. Stay safe, and let us know what we can do to support your situation.
Do you feel you have Eagle/long styloids and that could be the cause of your symptoms? My husband had CFS/long covid but it may be some of those symptoms are actually Eagle syndrome.
There is a doctor in Türkiye, and he may be able to help assess your images. My understanding is that as a Greek citizen you can travel to Türkiye without visas, granted I understand your travel options are limited with your CFS and home situation. Still, you might consider contacting Dr. Aghayev Kamran to see if he can review your scans. He is a neurosurgeon. We are travelling from Canada to Türkiye in December for my husband’s surgery.
As Jules asked, what scans do you have? Doctors may be able to provide a virtual assessment but it’s going to be based on you have access to scans (the starting point would be a CT).
