DizzyPopcorn Posted September 10, 2019 Report Share Posted September 10, 2019 Hello all! I just stumbled on this article about a study that was done by Doc. Grubb. Apparently a new biomarker has been found and it is very easy to screen for it, meaning that many hospitals will be able to have it in the future if it passes further trials. This is incredible news! https://neurosciencenews.com/pots-fainting-biomarker-14888/?fbclid=IwAR1yzka5ogO-f1H9IB3hpjSEz5B345ab2IdGNO1asI8JLsewzqxxj1gJZJ8 By the look of it, it would classify PoTS as an autoimmune disorder. Quote Link to comment Share on other sites More sharing options...
Pistol Posted September 10, 2019 Report Share Posted September 10, 2019 Thank you @DizzyPopcorn - SUPER interesting!!!!! Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 10, 2019 Author Report Share Posted September 10, 2019 3 hours ago, Pistol said: Thank you @DizzyPopcorn - SUPER interesting!!!!! No problem! I wish one day that this condition will be more easily screened for. Quote Link to comment Share on other sites More sharing options...
p8d Posted September 10, 2019 Report Share Posted September 10, 2019 Thank you so much for posting this! The findings are exactly what my Celltrend tests showed. Alpha a-1 autoantibodies. My first improvement came from Plaquenil and my recent improvement is from SCIG, both autoimmune drugs. Plaquenil did nothing for my BP/HR and I am not yet certain about the SCIG is helping those either but fevers, muscle aches, joint pain and swelling, fatigue, digestion are all better. Now if I could find something for the insomnia that isn’t an anticholinergic I would be happy. I am lucky that my neurologist and cardiologist always believed mine was autoimmune. I did test positive on the ANA eventually and was diagnosed with UCTD and that’s why my rheumatologist started Plaquenil. My neurologist talked him into SCIG and after 10 months of that I am doing things I haven’t in years. I am in no way cured and still suffer terribly from fatigue but if I schedule things appropriately I can actually do some stuff outside home. Again my sincere thanks for posting this! Quote Link to comment Share on other sites More sharing options...
DizzyPopcorn Posted September 10, 2019 Author Report Share Posted September 10, 2019 13 minutes ago, p8d said: Thank you so much for posting this! The findings are exactly what my Celltrend tests showed. Alpha a-1 autoantibodies. My first improvement came from Plaquenil and my recent improvement is from SCIG, both autoimmune drugs. Plaquenil did nothing for my BP/HR and I am not yet certain about the SCIG is helping those either but fevers, muscle aches, joint pain and swelling, fatigue, digestion are all better. Now if I could find something for the insomnia that isn’t an anticholinergic I would be happy. I am lucky that my neurologist and cardiologist always believed mine was autoimmune. I did test positive on the ANA eventually and was diagnosed with UCTD and that’s why my rheumatologist started Plaquenil. My neurologist talked him into SCIG and after 10 months of that I am doing things I haven’t in years. I am in no way cured and still suffer terribly from fatigue but if I schedule things appropriately I can actually do some stuff outside home. Again my sincere thanks for posting this! No problem p8d! Do you think i could order a Alpha a-1 antibodies test? Is that feasible / hard to do? Quote Link to comment Share on other sites More sharing options...
p8d Posted September 10, 2019 Report Share Posted September 10, 2019 It was a nightmare getting my blood to Germany to Celltrend. It had to go via FedEx with a bunch of forms one of which I wasn’t told about that resulted in the blood being held up in Denmark for 2 days. The local place wasn’t terribly well versed in sending blood overseas. I also had trouble finding a lab that would give me back my blood! Crazy and that took much longer than I thought it would. The lab at the place the neurologist who ordered the test (you didn’t need a Drs order for the test, just to get the blood drawn) wouldn’t give me the blood. It was worth it because my pharmacy benefits manager accepted the test and approved the IG which is very expensive otherwise. Quote Link to comment Share on other sites More sharing options...
Random-Symptom Man Posted September 10, 2019 Report Share Posted September 10, 2019 Cool stuff! Thanks for sharing. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted September 10, 2019 Report Share Posted September 10, 2019 2 hours ago, p8d said: I also had trouble finding a lab that would give me back my blood! Several of my local labs told me that once the blood left my body, it was no longer mine. It was legally their property and I couldn't have it. I'm not kidding. Scary to think what they could then do with their legal property. Quote Link to comment Share on other sites More sharing options...
Sushi Posted September 10, 2019 Report Share Posted September 10, 2019 Wondering if this applies only to POTS or if the neurally mediated hypotension group have this too. For those of us with NMH, it is sometimes frustrating that the research seems to focus only on POTS. Quote Link to comment Share on other sites More sharing options...
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