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Post by nick1989nc on Dec 28, 2019 15:22:13 GMT
It is indeed a waste to lose connection with some of the key players like: scared1992, worstoflucks, scaredmatt, etc. Also sux that they took down the forum. I think they merged 2 companies together and as a result only keep the other forum in the air (which has no good information). There is btw also a guy posting on patient. Info forum. Named Tony he seems to have the same as us. We should go ahead and restart the forum on healthboard
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Post by Keeponrolling on Dec 28, 2019 18:07:21 GMT
It has been restarted a dozen times... Healthforums shows (by taking down the other forum without warning) that it isn't the most reliable forum/business...
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Post by John on Dec 29, 2019 3:17:02 GMT
This Tony guy is good. He’s very good at explaining this disease. Google ‘Tony40819’, he replies a lot on the patient info website, you can see how many people he’s found with these symptoms. Also he’s calling it ‘Disease x’ - I think that’s a good name. We need this thing to trend online so people actually take notice and give it some attention.
Anyone know how to start a new forum?
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Post by Notdoingwell22 on Dec 29, 2019 22:34:27 GMT
@john,
I had a look and I agree that Tony has the same disease as myself. I didn't however see any way to contact him. Is his email listed anywhere?
Thanks
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Post by survivingtheplague on Dec 30, 2019 16:39:59 GMT
How come all the previous boards and sub-websites about this disease keep on getting deleted?
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Post by Insajad on Dec 31, 2019 9:01:20 GMT
@john, I had a look and I agree that Tony has the same disease as myself. I didn't however see any way to contact him. Is his email listed anywhere? Thanks do you have lost face in face and some muscle loss? I also have now inflammation in the colon and intestine. Nails that broke easily and hair loss. Also some fat in my liver seen in the ultrasound since the beginning of this disease. Acid reflux problems also and some skin elasticity loss. I have now droppy eyelids which I never have before. What about you?
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Post by survivingtheplague on Dec 31, 2019 9:13:07 GMT
Same issues as you man, nails are starting to thin only recently.
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Post by Insajad on Dec 31, 2019 9:39:06 GMT
Same issues as you man, nails are starting to thin only recently. I have the broking easily nail from the beginning. Do you have fatty liver? What are your symptoms?
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Post by survivingtheplague on Dec 31, 2019 9:56:28 GMT
Pretty much what everyone wrote here, The nail thing just started recently. Like the last month or some. Ive been dealing with this disease for a little longer than 3 years.
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Post by Insajad on Dec 31, 2019 10:38:32 GMT
Pretty much what everyone wrote here, The nail thing just started recently. Like the last month or some. Ive been dealing with this disease for a little longer than 3 years. what was your risky encounter? And have the inflammation in colon and the fatty liver?
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Post by Notdoingwell22 on Dec 31, 2019 11:31:58 GMT
Yup, droopy eyelids, fat loss in the face, muscle loss, brittle finger nails. It is easy to look and me and see that I am not healthy. Not sure about the colon or the liver. How Do you test for that?
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Post by Insajad on Dec 31, 2019 13:39:49 GMT
Yup, droopy eyelids, fat loss in the face, muscle loss, brittle finger nails. It is easy to look and me and see that I am not healthy. Not sure about the colon or the liver. How Do you test for that? for the liver it s the abdominal ultrasound and for the colon it s starts for me with pain 1 month ago so I decided to visit a gastroenterologist and he has done some stool tests for me. There is a stool test called calprotectin and if this test number is high that's mean you fave inflammation in the gut and colon so the doctor refers me to the colonoscopy. I have inflammation in some parts of the colon and instestins and a polyp. The doctor removes the polyp and send it to biopsy. Thanks God it s was an hyperplastic one that s mean in general it s the non malignant type.
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Post by Notdoingwell22 on Dec 31, 2019 16:42:13 GMT
I'm actually going to a gastroenterologist next week. Will see what comes of that.
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raavi
New Member
Posts: 49
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Post by raavi on Dec 31, 2019 20:53:44 GMT
The ehealth forum now sends me here www.healthboards.com/All info from the 150+ pages thread is lost. 3 forums disappeared in 1 year. I don't like where this is going. ; seems we have lost 10yrs of most important pages and key members of it. is this is the only forum left out? guys we require to connect other than the forums i feel, soon this will also go off. I know I'm following you on patient forum .how is your health now and what symptoms do you have?
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Post by shyami on Jan 2, 2020 20:05:06 GMT
Hi Raavi, almost 5yrs, initial symptoms subsided.
Health is detoriating i can feel, until now no major issues.
regarding your white tongue and neck issues, use Ginger, garlic, Turmeric, raw pepper in your food. you should recover.
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