Anyone’s genetic study fire serum amyloid variant? Mine just did… my LC clinic was wondering if I have micro clots well after this finding I guess it’s time to start down this path.. it’s wild!?!
I need some advice and/ or suggestions. I’m one of the us who has cEDS I got the diagnosis after developing Long Covid. I have terrible pain daily. I’m not supposed to take NSAIDS because MCAS. I also have ME/CFS and dysautonomia . Before COVID I could take naproxen or ibuprofen to help with pain but now I can only take acetaminophen and I don’t want to take too much because of the effects it can have on the liver.
I don’t want to take opioids but I’m literally laying in the bed literally barely able to move.
I’m really struggling today and I appreciate any suggestions.
EDIT- I can’t take LDN it gives me nightmares. I do home ketamine sessions every 3 days for PTSD & TRD. It helps with the pain but I over did it yesterday and my next session isn’t till tomorrow. I am a nurse and I had to go through my hospital board let them know.
I did some genetic testing, Going later this month to the Mayo Clinic for formal diagnosis. This was in my genetic report
The most important preliminary finding is in COL5A1, one of the two major genes for classical Ehlers-Danlos syndrome. Your structural-variant file contains five separate called structural variants inside the COL5A1 genomic region:
GRCh38 location
Call
chr9:134684967–134685545
~578-bp tandem duplication, heterozygous
chr9:134685192
~80-bp insertion, heterozygous
chr9:134792852–134792923
~71-bp deletion, heterozygous
chr9:134798569–134798653
~84-bp deletion, heterozygous
chr9:134828659
~95-bp insertion, apparently homozygous
It’s interesting It finally lets me know I’m not crazy after seeing so many physicians.
I found this researching ClinGen
COL5A1 has a definitive autosomal-dominant relationship with classical EDS, and ClinGen specifically recognizes loss of one functioning copy of COL5A1 as a disease mechanism.
I did some genetic testing, Going later this month to the Mayo Clinic for formal diagnosis. This was in my genetic report
The most important preliminary finding is in COL5A1, one of the two major genes for classical Ehlers-Danlos syndrome. Your structural-variant file contains five separate called structural variants inside the COL5A1 genomic region:
GRCh38 location
Call
chr9:134684967–134685545
~578-bp tandem duplication, heterozygous
chr9:134685192
~80-bp insertion, heterozygous
chr9:134792852–134792923
~71-bp deletion, heterozygous
chr9:134798569–134798653
~84-bp deletion, heterozygous
chr9:134828659
~95-bp insertion, apparently homozygous
It’s interesting It finally lets me know I’m not crazy after seeing so many physicians.
I found this researching ClinGen
COL5A1 has a definitive autosomal-dominant relationship with classical EDS, and ClinGen specifically recognizes loss of one functioning copy of COL5A1 as a disease mechanism.
Give you must see places and the best local eats. Going to be spending a week with my spouse. Like adventures and interesting things to do.
Lumenate or their Nova mask to enhance their ketamine treatment? I am really trying to rewire my brain as much as I can from Long Covid. Ketamine has done wonders for me I’m no where near 100% maybe 40%. I’ve ordered one so as soon as I try a session with it I’ll post an update. I do not work or am I associated with the company. I’m just trying to get some neurons rerouted
I have been “double jointed” all my life.. EDS. I now have long COVID going on 5 years. I’ve just been referred to Mayo by my allergist/ immunologist because I also have MCAS amongst other things. I’m just wondering been through it so I know what to expect