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@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple years ago, and we are still trying to confirm the dX. That is the problem with so many disorders and diseases in this community. One dX really deserves two or three more, and we keep working toward a complete dX. And this includes anything that mentions PMR, protein, genetics. We all have to keep our minds open to advances opening up in dX processes until the day we die. Especially true when the disease is systemic, primary, progressive, hereditary. There are a few tests which continually show new issues for decades, including sFLC, ANA, BUN, etc. The reason is warn about this is that you should not be discouraged by new dXes along the way. They probably just mean that your base disease is progressing, so your body is changing to react. Some tests even seem to show recovery, but really are just showing disease progression, such as Cardiac Ejection Fraction, Glom Filtration Rate, even some like Creatinine, Most importantly, keep after your doc to do a complete protein deposit set, including sFLC, SPEP, Serum IFE, Urine PEL/IFE, probably every year. So keep after the Doc. Mayo Videos insist this is important. And that is the importance of this Connect program. A huge majority of human diseases will not be recognized by even the most competent doctors because they never see another patient with that issue. This means that those who experience these issues will be the best witnesses for any dX of rare diseases. So make careful notes, and keep all your discharge and dX papers along the way. Just advice. https://bit.Ly/1w7j4j8 (Amyloidosis Dossier)
Replies to "@olegraymare ...Hi, friend. Tough beans about the PMR dX. I was dXed with PMR a couple..."
Hi read your post and thought I'd share my experience. I have had Crohns disease for 25 years. I've had multiple operations ranging from removal to abscesses being drained. It has also given my a heart operation. I've experienced Psorisis on my head and other parts of my body. I understand there is no cure yet. Mine is pus related. I don't take any medication and stress definately effects it. I'm new to mayo clinic. I will endeavour to follow what happens here.
Good Luck
Martin Graham
Hi, @martingraham37 -- sounds like you've had a lot of medical challenges, Martin, and like you'd have a lot to share.
As you have Crohn's disease, I thought you might be interested in dialoguing with ladybugmg, who posted about a study on Crohn's disease and artificial sweeteners,https://mayocl.in/2IdtDs6.
Also, since you've had heart surgery, you might be interested in following the Connect Heart & Blood Health group, https://mayocl.in/1XWwPwo. You'll see "+Follow" in the lower right part of the blue-gray banner for the group. If you scroll down on that page, you may see some particular discussions on heart of interest to you.
Thanks for your reply will follow up with that.
Martin Graham
Just read the article and have had symptoms of pain and cramping when taking too much sugar like carbonated soft drinks Coca cola or Pepsi. Will do some study for my thesis on Proteabacteria Phylum Group Myeloperoxidase Leukocytes Sucralose Maltodextin Immune Cell Lipoplysaccharides Antigens and posted link to the study on my facebook page
/martin.graham.5811
Thanks
Martin Graham
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@Dear Oldkarl: It is good to read your posts. It encourages me to believe in myself when the doctors look at you as if you are making up your illnesses. But why do they continue with their attitude when the psoriasis rash is ovver 15% of your body and the fingernails shrivel up and fall off leaving the nail bed exposed. Oooch! Very painful. I do wonder why I do not wish this on them. Perhaps because I have found a belief in god.