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Asia / Re: Anyone from Hong Kong here?
« Last post by Bkchu on July 18, 2017, 11:25:25 PM »
I am also 4+ years in TSW and have seen over 10+ TCM doctors, but so far none can completely cure my symptoms. I still flare on my face, neck and arms. What's your experience with those TCM doctors?
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ITSAN Member Blogs / 5 years & 3months in
« Last post by Y-Sho (UK) on July 15, 2017, 08:01:00 AM »
Hello Everyone!

I want to share my on going journey with everyone here.  Its been 5 years 3 months; but am nearly there!!

I saw big improvement on my face a little over a month ago, so I decided it was time to go & preach  :say_lol: to the world as it were and create more awareness.

Please subscribe, comment and like the vlogs [/u]so that the vlogs get more visibility; thus getting to those who need to hear and see the repercussions of topical steroids.

Thanking you in advance.

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3
Asia / Re: Anyone from Hong Kong here?
« Last post by animorphs on July 04, 2017, 10:18:55 AM »
Hey,

Just wanted to make a post to see if anyone from HK is still active here. I've been trying to treat RSS (I never used steroids for an extended period of time, and my first flare was unrelated--but the symptoms are exactly the same) for four years now. I use antihistamines occasionally, but have made most progress with TCM.

However, some TCM prescriptions cause me to flare, and after persisting with the practitioner for a few more times, I would switch in hopes of getting the right prescription. I've been to 10+ TCM practitioners now, and am still searching for the right one. I haven't tried Dr. Mak (or Dr. Lam) as mentioned in this forum. But wanted to ask if anyone has any updates on their experiences with these doctors.

In any case, I'm on the look out for a TSW/RSS-experienced TCM doc and wanted to reach out to see if we can pool our experiences together!
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ITSAN Member Blogs / Re: My daughter's healing video
« Last post by BraveC on May 14, 2017, 06:58:49 PM »
Great job mom! We have been there too. We are still experiencing the ups and downs of this journey. We are 18 months and hands and ankles are still having a hard time healing. Thank goodness we found this site. Keep going, these kids are amazing!
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ITSAN Member Blogs / Re: My daughter's healing video
« Last post by SupportforAva on May 06, 2017, 04:52:18 PM »
I forgot to add that I also have a Facebook page dedicated to her journey in case anyone is interested or might find some comfort in it-

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ITSAN Member Blogs / My daughter's healing video
« Last post by SupportforAva on May 05, 2017, 01:12:13 AM »
This is my 5 year old daughters journey toward healing from TSW. She is almost 16 months TSW and while not healed yet, greatly improved. I hope this helps give someone some hope to cling to during the many rough TSW moments ❤️



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7
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"But if you look closer at her cheeks, her feet, and her legs, they bear traces of a deeper shade of plum. Everywhere there is plum, there is pain. She was born with a rare neurological condition called erythromelalgia, otherwise known as man on fire syndrome, in which inflamed blood vessels throughout her body are constant sources of pain. Because the inflammation is exacerbated by physical contact, stress, and even the smallest elevation in surrounding temperature, Costa lives her life with great care."

"Waxman was interested in the sodium channels found in the membranes of neurons—portals that allow charged particles to flow in and out of the nerve cells. In particular, he believed that one of those sodium channels, Nav1.7, played an especially powerful role in how we experience pain. In his theory, a stimulus triggers the Nav1.7 channel to open just long enough to allow the necessary amount of sodium ions to pass through, which then enables messages of stinging, soreness, or scalding to register in the brain. When the trigger subsides, Nav1.7 closes. In those with faulty Nav1.7 channels, sensations that typically wouldn’t register with the brain are instead translated into extreme pain."
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Europe / Hola! Anyone in Spain?
« Last post by tommy on March 20, 2017, 04:39:07 PM »
Hola!

I'm on TSW/PW since 2008. Mostly recovered, except during the winter when I struggle with low immune system, constant herpes and eye infection. I'm living in Barcelona since 2014 and would love to meet people with RSS!
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New Zealand / Re: Tauranga
« Last post by Stevo on February 19, 2017, 04:37:10 AM »
Hey Bucky

Just seeing how the withdrawl is going, you still going through it? I'm in Tauranga, been off steroids for 2 and a half years after a lifetime of taking them. If you're going through hell just remember it will get better, at the mo I'm 95% healed, it may flare up again but at least I'll know what to expect. Let me know how you are getting on?

Stevo
Tauranga 
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Thanks for sharing this. It seems like there's a group of TSW patients who go to their doctors without papers like these - BAD IDEA. Doctor's won't take anything we say seriously unless we have documentation to back it up.

This!
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