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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Fibrosis

NEW STUDY! Parasym Plusโ„ข for Multiple Sclerosis › Forums › PrettyIll.com Discussion › The Latest Research › Fibrosis

  • This topic has 8 replies, 3 voices, and was last updated 9 years, 5 months ago by najmul.
Viewing 9 posts - 1 through 9 (of 9 total)
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  • September 9, 2013 at 1:18 am #569
    Maja
    Participant

    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

    September 10, 2013 at 5:35 pm #4317
    Dr. Diana
    Keymaster

    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.” ๐Ÿ˜‰

    September 10, 2013 at 6:14 pm #4321
    Maja
    Participant

    Dear Dr. Diana. Thank you for your answer!! ๐Ÿ˜‰ 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!

    September 11, 2013 at 7:04 pm #4324
    Dr. Diana
    Keymaster

    Dear Dr. Diana. Thank you for your answer!! ๐Ÿ˜‰ 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! ๐Ÿ™‚

    September 20, 2013 at 6:51 pm #4402
    Maja
    Participant

    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. ๐Ÿ™‚ Sending you big hugs!

    September 20, 2013 at 7:25 pm #4404
    Maja
    Participant

    Okay, I found it and sent it to you. Love and hugs, Maja

    September 21, 2013 at 4:52 pm #4409
    Dr. Diana
    Keymaster

    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’! ๐Ÿ˜‰

    September 21, 2013 at 6:42 pm #4410
    Maja
    Participant

    Thank you!! ๐Ÿ™‚ 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! ๐Ÿ˜‰

    October 22, 2013 at 12:18 am #4535
    najmul
    Participant

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