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Old 06-19-2012, 08:50 PM
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lady_express_44 lady_express_44 is offline
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Join Date: Aug 2006
Location: Vancouver, Canada
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15 yr Member
lady_express_44 lady_express_44 is offline
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lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
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That's very interesting that you were dx with Ulcerative Colitis, as I was too in about 1986, then with MS in 1991.

I used the Sulpha drugs for the UC (that's PAINFUL, eh??), up until 2005 when I went on Low Dose Naltrexone (LDN) for the MS, since I had no other options available to me with the mainly spinal-concentration of lesions. By then I had had two severe TM attacks, and my neuro's also said the MS DMD's wouldn't help, based on his clinical observation of his patients.

Of course back then they didn't realize that NMO was a separate disease, so it may have been because some of his recurring TM patients actually had that ... but either way, I wasn't offered the MS DMD's.

With no options available to me, I went looking for something to use, and happened upon LDN. As it turned out, LDN had been under-going clinical trials for Crohns (or UC??), and it proved very successful. It was also being used off-label for MS, so I got on it right away and have used it since then. I have not had one UC attack since I started on it, besides the many benefits I got for MS.

As far as NT opening up a separate forum for TM, this condition is very, very rare actually ... something like 1,500 cases a year are dx in the US. Some of those cases are idiopathic (no known cause), some are from MS, some from NMO, etc., so you probably don't run into a lot of information on it because of that.

As you mentioned, there are varying degree's of "attacks", and resulting disability. Sometimes it is a one-off (most often actually) and other times it is recurring. No matter what, it's GROSS though, IMHO.

I consider myself VERY lucky to only be as disabled as I am, given how bad it can be. I had it very bad in the attacks, but I had a good recovery the first time, and reasonable recovery the second, TG. I had a third TM attack in 2007, but it was a more moderate one compared to the other two. All of mine have been proceeded by infection.

Nice to meet another person who understands anyway!!

Cherie
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