wonder drug?

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wonder drug?

Postby MrsGeorge » Thu Oct 23, 2008 2:15 am

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Postby gibbledygook » Thu Oct 23, 2008 2:19 am

This is Campath.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Wonderfulworld » Thu Oct 23, 2008 11:42 am

This sounds fabulous. Well, there are some negatives in the side effects, but at least there are some side effects that can be halted or managed.

This really makes me hopeful.
Are there any Campath'ers out there who feel it reflects how they are doing on it? - I had a sneak in at the Campath thread and it did look positive, just wondering if this press release is overly optimistic, or spot on. Nice to feel hope for a few minutes anyway, hate the thought of a shrinking brain 8O
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Postby MattB » Thu Oct 23, 2008 11:53 am

Would that promote repair of my optical nerve? I don't like to complain because I feel lucky to be in as good of shape as I am but I'd truly like to have my full vision back.
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Postby Wonderfulworld » Fri Oct 24, 2008 1:39 am

Know what you mean Matt, I dream about my hearing coming back to my right ear....mostly I assume it's gone forever but when I see something like repair/regeneration mentioned I allow myself to get a little optimistic!
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Postby Punchy » Fri Oct 24, 2008 6:23 am

Ww, I didn't realize you were experiencing hearing problems. I was told by my hearing doctor (audiologist?) that hearing loss due to MS is so rare it's almost impossible. But I've had a few issues myself and have heard of other people experiencing it.

As for Campath, I've received about 10 emails in the past 24 hours from friends and family, forwarding me the link about the new MIRACLE CURE. I know, I should be lucky to be loved but sometimes... ARGH!
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Postby Wonderfulworld » Fri Oct 24, 2008 6:49 am

Oh yeah Punchy I have to listen (albeit with one ear :lol: ) to that cr*p about it being "so rare....." too. I got a second opinion from the best ear guy in the country and he confirmed it was sensorineural hearing loss due to MS. But I am left feeling the neuros don't believe it, quite....they always leave it out when calculating my EDSS. My Gran, her sister my Great Aunt and their mother, my great great grandmother were all deaf in their right ears. So maybe their is an inherited weakness there too

I was paralysed down my right side 10 years ago and my hearing went in 10 seconds flat. Gone. During the biggest relapse I've ever had, so I can't think it's anything other than MS.

I do know of one other person (through a mutual friend) who lost her hearing totally in one ear during an MS relapse but 6 months later it came back.
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Postby freiguy » Fri Oct 24, 2008 7:31 am

I just went for my 3 month post campath checkup. My blood counts are coming back up each month and so is my energy level. So far things are going really well. I was diagnosed early on when compared with others. The chance to halt any progresion was exciting. After looking at the campath data I made the decision to go with it. My doctor is great and I am happy to say that I have not had any unexpected problems so far.
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Postby duncan1 » Tue Oct 28, 2008 2:43 am

Minocycline seems to be even more effective, is very inexpensive, and has extremely low side effects (which is why it is used to treat adult acne):

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Postby RuSmolikova » Tue Oct 28, 2008 2:54 pm

Duncan1, I´m sorry...
A group of American scientists has warned other researchers that an acne drug being tested as a possible treatment for a variety of neurodegenerative diseases - including in Canada for multiple sclerosis - may actually cause harm.
<shortened url>
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Postby Sharon » Tue Oct 28, 2008 5:10 pm

WW -

I also have hearing loss in the right ear and ringing in the ear. I believe it to be my first exacerbation which was about 35 years ago. The neuros have never added the hearing loss as one of my symptoms of MS - again, like your neuro, they say it is not related to MS. I just think to myself - BET ME!

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Postby duncan1 » Tue Oct 28, 2008 7:23 pm

RuSmolikova wrote:Duncan1, I´m sorry...
A group of American scientists has warned other researchers that an acne drug being tested as a possible treatment for a variety of neurodegenerative diseases - including in Canada for multiple sclerosis - may actually cause harm.
h


Minocycline has been given to over 10 million people for an average of 9 months each in the UK alone, and it is extremely safe. The causative agents of MS and ALS are completely different and the article you refer to is nothing more than scare mongering by the USA's pharmaceutical industry, which fears the loss of the lucrative MS market for drugs, since minocycline is off patent. There have been trials with minocycline for ALS, Huntington's, Parkinsons and MS and only in ALS was there an increase in mortality, and this should have been made clear by the USA researchers. The Canadian study has already had a 2 year small scale trial of 10 people and none reported an increase in symptoms, and in fact, 9 of the ten reported a dramatic decrease in symptoms. One person dropped out due to the GI problems, which were not serious and unrelated to MS.
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Postby Grumpster » Wed Nov 05, 2008 4:53 pm

A ten person study sounds really weak....sorry. Antibiotics such as mino have been helpful for some. I was on a combination antibiotic protocol for >8 months and it definately did not help me.
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