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Dear Dr. Diana, I am interested to know how are you sure you have fibrosis in your shoulder? What are your exact hints to fibrosis? I am 90% sure that in my body must be fibrosises – there cannot really be anything else going on I think – and I would like to be completely sure but I do not know how to get there. MRI might not show it, do you think? Blood values? Or rather symptoms and conclusions? Would love to know what your experience with fibrosis and diagnosis of it is. Hugs from Germany, Maja
Dear Dr. Diana, I am interested to know how are you sure you have fibrosis in your shoulder? What are your exact hints to fibrosis? I am 90% sure that in my body must be fibrosises – there cannot really be anything else going on I think – and I would like to be completely sure but I do not know how to get there. MRI might not show it, do you think? Blood values? Or rather symptoms and conclusions? Would love to know what your experience with fibrosis and diagnosis of it is. Hugs from Germany, Maja
Hi Maja, For me, it was an “educated guess”! I developed a “frozen shoulder”, which looked like a fibrotic event when I read about it in the literature. I also developed fibrosis elsewhere, so when I spoke to my doctor, he and I sort of agreed it may be fibrosis. The doctor offered to do a biopsy to confirm. I said, “Oh, nevermind.” 😉
Dear Dr. Diana. Thank you for your answer!! 😉 I understand that.. –Where else did you develop fibrosis? I am quite sure that “my” kind of gastroparesis that I have will most likely be due to fibrosis of my stomach and also most likely of other muscles in my stomach. Same with my uterus and the polyp I got there. And the muscles in my mouth`s cheeks being fibrotic and causing scars and wounds and swellings inside my mouth etc. Fibrosis causes a lack of blood supply/tightended muscles, nerval over-activity I think in my body in these tissue areas that are most affected. My tissue tells me exactly by feeling really cold in the areas.. Also tend to get swellings from that inside on the linings and mucosas.. What do you think where does fibrosis most likely occur in EDS, in what kind of tissue? Muscles, even fat?, connective tissue itself?, fascia, tendon-like tissue…I would love and to know more about it. (And MRI prob won`t show these kind of fibrosis I guess..) Hugs to you – hope you will manage to get rid of the fibrosis in your shoulder!
Dear Dr. Diana. Thank you for your answer!! 😉 I understand that.. –Where else did you develop fibrosis? I am quite sure that “my” kind of gastroparesis that I have will most likely be due to fibrosis of my stomach and also most likely of other muscles in my stomach. Same with my uterus and the polyp I got there. And the muscles in my mouth`s cheeks being fibrotic and causing scars and wounds and swellings inside my mouth etc. Fibrosis causes a lack of blood supply/tightended muscles, nerval over-activity I think in my body in these tissue areas that are most affected. My tissue tells me exactly by feeling really cold in the areas.. Also tend to get swellings from that inside on the linings and mucosas.. What do you think where does fibrosis most likely occur in EDS, in what kind of tissue? Muscles, even fat?, connective tissue itself?, fascia, tendon-like tissue…I would love and to know more about it. (And MRI prob won`t show these kind of fibrosis I guess..) Hugs to you – hope you will manage to get rid of the fibrosis in your shoulder!
Hi Maja, I’m still working on all of this, and much of it may depend upon our genes. Are you in the states? Did you complete a symptoms checklist (it’s under “Articles and Handouts”). We may be able to tell if you’ll respond to the medicine coming out, not only for gastroparesis, but for numerous other dysautonomia symptoms. Some of what you’re describing may SEEM like fibrosis, but *may* not be. That would be awesome, anyway! 🙂
Dear Dr. Diana, sorry it took me so long to answer. I live in Germany, I am not in the states. I will have a look at the symtoms checklist and try to fill it out – if I find it lol ;). Yes, that would be interesting to find out if I might respond to that medicine. – And, yes, I know, it might not be fibrosis – it is all kind of confusing. 🙂 Sending you big hugs!
Okay, I found it and sent it to you. Love and hugs, Maja
AWESOME! The symptoms checklist will help us all. It’s too bad you’re across the pond! (It makes it harder to participate in the treatment trials, dad-gum-it!). Big hugs back atcha’! 😉
Thank you!! 🙂 Yes, I am kind of far away.. but… 15 years ago we would have had to write letters and put a stamp on them and waaaait ;o) lol. Hugs back at you! 😉
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