Westerner living with MS in China... Any others?

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Westerner living with MS in China... Any others?

Postby Laowai » Tue Jan 31, 2012 6:34 am

Hello all,

I am a new member here and wanted to say thanks to everyone for all the information already posted.

My main reason for posting is that I am a US citizen who has been living and working here in China for many years. I was diagnosed right before I first came almost 7yrs ago and really had no symptoms so I just kinda "forgot" about it. Well... No more forgetting these days :-)

Problem is that I don't really have a primary physician and hospitals here are good, but very different in their approach. Also, MS is a less common disease in Asia so even the doctors I have seen have not been terribly helpful. I have had multiple MRIs here (they are super cheap... About 100US a pop) but doctors don't seem to be able to read them very well for lesions and actuall had one doc say that he saw no signs of MS. That might be so, but I have bilateral leg weakness, classic MS "hug" feelings, a previous diagnosis, and just generally feel like s**t so something is wrong!

I would LOVE to hear from any others, Western or Chinese that are dealing with MS and living in mainland China. What doctors do you see? What therapies (if any) are you involved in? Etc.

Any and all advice would be really appreciated.

Thanks in advance to all.

Male - 33yrs old

(PS- I would love to end this with some inspirational, "just keep your head up!!" type of tag line, but if the readers here are at all like me, it will annoy 50% of you and encourage the other 50%. Then tomorrow it will annoy the 50% that it encouraged yesterday and encourage the 50% it annoyed yesterday. So I'm guaranteed to encourage and annoy 100% ;-)
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Re: Westerner living with MS in China... Any others?

Postby Taurus » Tue Jan 31, 2012 11:55 am

Hi Laowai

I am not in China but living close by in Pakistan. I had done some research on TCM treatment for MS and it indicated that Chinese medicine by the name of Ping Fu Tang had some success once given to 30 patients. Please see this link www.itmonline.org/arts/msalsmg.htm.
From your post, it seemed that overall your health is not so bad (Good News). Please see if you could get hold of Neltrexone for LDN. Further CCSVI is real. Please get yourself checked, if u can.
I wish u best of luck and health
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Re: Westerner living with MS in China... Any others?

Postby euphoniaa » Sun Feb 05, 2012 10:37 am

Taurus wrote: Please see if you could get hold of Neltrexone for LDN. Further CCSVI is real. Please get yourself checked, if u can.

Hi Laowai and welcome! I just have to add a quick clarification to the above statements: I think Taurus is suggesting that you try a prescription for LDN, or Low Dose Naltrexone, which is a weak version of a med that is used by some patients off-label for MS symptoms. There's an LDN forum here, but there has been very little research about its effects, so most of the reports are anecdotal.

As for CCSVI, there's a forum for that here, too. It’s a BIG forum, with lots of discussion on a new, under-investigated vascular treatment approach that’s fraught with controversy and confusion. Even the doctors with the most experience disagree on standards for how to either test for CCSVI or treat it. So…the comments to a forum newcomer that "CCSVI is real" and "get yourself checked" may not be especially helpful in explaining an extremely complex issue. :smile: (See the CCSVI Forum for info.)

Reported results (still mostly anecdotal) from those who have been treated for CCSVI vary from no change, to some improvements (often minor ones) quickly gained - quickly lost, to longer lasting improvements (often minor ones), to serious injury. There are few places even in the U.S. that do the testing/treatment, let alone China.

Neither LDN nor CCSVI testing/treatment are even options for me and I live smack dab in the Midwest of the U.S. It’s really funny, though, that right after you posted this the other day, an American professor (who has a daughter with MS) came into my office extolling the virtues of a Chinese acupuncturist (office only 2 hrs away) where his daughter is headed and gave me the number. A quick TIMS "search" for "acupuncture" gives 270 posts here.

As for LDN, the last doc I asked for LDN fired me as a patient with a certified letter. Plus I progressed to using a cane for the first time midway through my year on LDN. And CCSVI? The few clinics that do testing, treatment, or follow up are hundreds of miles away from me.

So, now questions for you. How did you get your initial diagnosis of MS? Did you have brain lesions at that time? Do you have copies of your reports? Diagnosis can be difficult and questionable without the telltale signs of brain or spinal lesions. (Once again I’ll post a link to my MRIs, with ‘classic’ MS lesions. general-discussion-f1/topic16335.html?hilit=tumefactive )

I have good friends where I work (a university) who were born, lived, worked, or traveled recently in China (some are there now) and it seems they’re often without internet access, so you may not have many replies from posters currently in China. I'll be glad to ask around and see what they say.

But anyway, welcome and keep posting and asking questions. There are new posters here every day. Good luck!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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