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Postby TheSleeper » Thu Feb 09, 2006 9:57 pm


Hi new to your board so here is the run down.

My name is Paul, male, 54, married with 4 kids. Two older and on their own sort of and two teenagers still at home.

I live about 35 miles southwest of Cleveland Ohio.

I have been sick for about 3 years and in December 2005,I was told in all probability PPMS and the doctor is concerned about the rapid progression.

He mentioned trying IV steroids to see if they help, if they didn`t he said my only option was probably chemo.

I am concerned about the risks of chemo, he didn`t mention which one but I have some knowledge of the common ones for MS, Novantrone and Cytoxan.

High school grad, but in 1969, LOL everything has changed. I am trying to understand this but it seems the more info I get the more confused I get.

I am looking for straight answers on chemo, there just seems to be a lot of conflicting information given to me. If anyone has had any luck with something other than chemo for PPMS I would like to hear about it.

I used to drive a semi truck (30+ years) I was a practising Bass fisherman, and do it yourselfer.

I guess that is about it. HI!

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Postby Alicia » Fri Feb 10, 2006 11:32 am

Hello TheSleeper!

Welcome to this site. I have had MS for about 6 1/2 years. I have found this site to be very informative.

Alicia
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Postby Arron » Fri Feb 10, 2006 12:26 pm

TheSleeper-- welcome to the site, you are amongst friends.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby sojourner » Fri Feb 10, 2006 1:14 pm

Hi Sleeper,

Forget the MS--how did you survive 4 kids! :D

You might want to check out www.CPn Help.org. There are people (and doctors) treating MS as a chronic infection with antibiotics. There are many with progressive MS doing nicely. My husband has RR and is doing well, too.

If my only alternative was a chemo drug, I certainly would at least take a look. There are very knowledgable people over there who I know would be happy to help.
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Postby SarahLonglands » Fri Feb 10, 2006 2:52 pm

Hello Sleeper,

And here is the wife of one of the knowledgeable people: a hospital doctor and an FRCPath. I was diagnosed by my neurologist with aggressive secondary progressive disease, but my husband, after a few days solid research, treated me with the appropriate abx and the disease was halted in its tracks. I am now back to both painting large canvass, being an artist by profession , and playing my cello for recreation. Two and a half years ago I was deteriorating so rapidly that this was unimaginable.

Please take a look at http://www.CPn Help.org because you have nothing to loose and maybe a lot to gain.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby TheSleeper » Fri Feb 10, 2006 6:29 pm

Thanks for the welcomes!

Alicia it has been interesting so far.

Arron I like the disclaimer but it has been my experiance so far that some doctors could also use one. LOL

Sojourner with 4 kids it has been a little more exciting than I would like it at times. Yes the chemo is kind of scarey to me, especially because a lot of info I consider to be important seems to be hidden. I called the government agency today that handles food and drug safety here in the states(FDA). They would not give me information on deaths caused by the chemo treatments over the phone.

Sarah so far this has been an experiance, one I could have done much better without. It has left me with sort of a dim view of some of the doctors, insurance companies, and government office here. I have pretty much had to diagnose myself and get a specialist to confirm it. I can hardly walk, I look like a drunk when I do and can only manage to stay awake for sort periods of time. Lots of other problems also. Stuff happens!
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Postby Katman » Sat Feb 11, 2006 7:06 am

Hi Sleeper.

So happy you found us. ThisisMS and www.CPn Help.org are the best MS sites in the world. I am Rica- stagename Katman, with very aggressive PPMS. I was where you are 17 mos. ago, probably worse since I could not walk without support- a cane or a walker- and now walk a mile several times a week- no support. There is great hope here for people like us but like the best things in the world, takes some fortitude. We will be with you all the way.

Rica.
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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