Talk Cancer

Question:

Josiah Daniel Suarez wrote: > On Sat, 14 May 2005 20:29:52 -0700, "Michael" > <muirh…@haidagwaii.net> wrote: >> Yep.   I’m dealing with  some mild myoclonus in my right lower back >> for the past month or so.   I hate it, and it often really *hurts*. >> Smoking a tiny bit of pot every few hours helps it quite a bit, but >> I greatly fear I’ll soon be needing to give that up infavour of (or >> at least supplement it with) some nasty chemicals. > Yeah I smoke a little bit of pot every day, it helps alot of my > symptoms and puts me in a good mood. Unfortuneately it’s very > expensive around here, too bad insurance doesn’t cover it!

Oh, yeah… would that it *could*.  :-) I dunno what constitutes "very expensive" where you are… I have a feeling you’re in the UK, but your posting host makes you unlocatable unless I wanna do some investigative work – for which I’m seldom in the mood unless I’m threatened. Here in northwestern British Columbia, the best bud to be found (kush, rhino, widow, blueberry and such) runs $35-40 or maybe more for an eighth… unless you have grower friends.   The two nice things about it is that for me, an eighth of top-quality bud is 2 months’ worth or more, and $20/month is truly as cheap as dirt when compared to the (much more risky/toxic/expensive) pharmaceuticals I might buy for the same purpose. > A protein > shake every morning helps ALOT too (soy milk mixed with whey protein > powder, it’s about 50g of protein, makes me feel great).

I do kinda the same thing (though seldom), but my version’s a lot higher in fat: low-fat cottage cheese, *lots* of other cheeses, and lots of halibut, salmon and venison.   >> Get used to reading up on meds and other treatments if you aren’t >> already doing that.   A lot of it is of value to only a few people, >> but you never know what treasures await only you amid all the dross. > Thanks for the advice, you’re a big help.

I try.   ((U))   M

Response:

On Sat, 14 May 2005 20:29:52 -0700, "Michael" <muirh…@haidagwaii.net> wrote: >Josiah Daniel Suarez wrote: >> Hi guys! Let me introduce myself real quick, I’m a 22 year old white >> male, and I was diagnosed with MS back in December of 2001. >You’re too fucking young for this crap.   News like yours gets in my face.

Thanks for responding. Yeah I’ve never met anyone else with MS that’s my age, when I go to the neurologist everyone is 35+ years of age. I’ve read that the prognosis for those diagnosed before age 25 is somewhat better than those diagnosed later in life, I have no idea if that’s true or not, but I allow myself to believe it for the sake of my sanity! >> This attack has left me somewhat disabled due to a terrible shakiness >> in my entire body. Maybe disabled is the wrong word, I haven’t found >> any of my usual activities to be impossible, just extremely difficult! >Yep.   That’s been the case for each attack I’ve been through: none has >truly "disabled" me, but every one has left me with a new (sometimes nasty) >limitation or impediment to doing what I do.   I haven’t given very much up >entirely, but there is an increasing number of things that take more energy, >more concentration and/or more adaptative creativity than they ever did >before.  <shrug>   Life’s like that.   I’m happy the dx wasn’t metastatic >brain cancer (as the first sensible doc I saw about this stuff said it might >be.)

Yeah I was scared when they initially said it might be AIDS, luckily the tests came back ok. (phew) With my past attacks I’ve been able to recover to a degree in which most of my symptoms are negligible, but the recovery process takes a long time. >> I wanted to ask if any of you experience this kind of a symptom, >Yep.   I’m dealing with  some mild myoclonus in my right lower back for the >past month or so.   I hate it, and it often really *hurts*.  Smoking a tiny >bit of pot every few hours helps it quite a bit, but I greatly fear I’ll >soon be needing to give that up infavour of (or at least supplement it with) >some nasty chemicals.

Yeah I smoke a little bit of pot every day, it helps alot of my symptoms and puts me in a good mood. Unfortuneately it’s very expensive around here, too bad insurance doesn’t cover it! A protein shake every morning helps ALOT too (soy milk mixed with whey protein powder, it’s about 50g of protein, makes me feel great). >>  and >> if so how you deal with it. I’ve heard good things about the drug >> Tegretol, has anyone tried it? >Tegretol (CARBAMAZEPINE) is a life-saver for many people… but it’s a >benzodiazepine (closely related to valium,) it’s very addictive (not a real >major concern, but it has important implications if you have to stop taking >it,) and it has some potential for causing serious cognitive impairment. >It’s also got some other (occasionally severe) side effects that you should >consider before you decide about taking it or not.

Ahh yes I’ve heard good things about Tegretol. I’ve used Valium before (back when I was suffering from severe vertigo) and luckily the side effects were minimal. I hate to pile on ANOTHER medication to what I’m already taking, but hey whatever it takes! I’ll ask my doctor. >Check out: >http://www.nationalmssociety.org/Meds-Carbamazepine.asp (good, basic info… >though it fails to list all the reasons for prescribing it in MS >symptom-management) >http://bipolar.about.com/cs/sfx/a/sfx_tegretol.htm (I’m bipolar and this is >important stuff, just in case) >Get used to reading up on meds and other treatments if you aren’t already >doing that.   A lot of it is of value to only a few people, but you never >know what treasures await only you amid all the dross.

Thanks for the advice, you’re a big help. Josiah

Response:

On Tue, 17 May 2005 21:00:57 -0700, "Michael" – Hide quoted text — Show quoted text -<muirh…@haidagwaii.net> wrote: >Josiah Daniel Suarez wrote: >> On Sat, 14 May 2005 20:29:52 -0700, "Michael" >> <muirh…@haidagwaii.net> wrote: >>> Yep.   I’m dealing with  some mild myoclonus in my right lower back >>> for the past month or so.   I hate it, and it often really *hurts*. >>> Smoking a tiny bit of pot every few hours helps it quite a bit, but >>> I greatly fear I’ll soon be needing to give that up infavour of (or >>> at least supplement it with) some nasty chemicals. >> Yeah I smoke a little bit of pot every day, it helps alot of my >> symptoms and puts me in a good mood. Unfortuneately it’s very >> expensive around here, too bad insurance doesn’t cover it! >Oh, yeah… would that it *could*.  :-) >I dunno what constitutes "very expensive" where you are… I have a feeling >you’re in the UK, but your posting host makes you unlocatable unless I wanna >do some investigative work – for which I’m seldom in the mood unless I’m >threatened. >Here in northwestern British Columbia, the best bud to be found (kush, >rhino, widow, blueberry and such) runs $35-40 or maybe more for an eighth… >unless you have grower friends.   The two nice things about it is that for >me, an eighth of top-quality bud is 2 months’ worth or more, and $20/month >is truly as cheap as dirt when compared to the (much more >risky/toxic/expensive) pharmaceuticals I might buy for the same purpose.

I’m on the East coast of USA, and the last time I bought some it was $135 for half an ounce. That actually sounds like about what you pay over there. I guess I’m spoiled, I used to live in Texas and prices were very low there, I think because of the huge quantity of pot coming over the border from Mexico. An entire ounce could be had for less than $50! >> A protein >> shake every morning helps ALOT too (soy milk mixed with whey protein >> powder, it’s about 50g of protein, makes me feel great). >I do kinda the same thing (though seldom), but my version’s a lot higher in >fat: low-fat cottage cheese, *lots* of other cheeses, and lots of halibut, >salmon and venison.  

Sounds very nutritious, but *gag* a fish and cheese protein shake??? You’re a brave soul… Josiah

Response:

Josiah Daniel Suarez wrote: > I’m on the East coast of USA, and the last time I bought some it was > $135 for half an ounce. That actually sounds like about what you pay > over there. I guess I’m spoiled, I used to live in Texas and prices > were very low there, I think because of the huge quantity of pot > coming over the border from Mexico. An entire ounce could be had for > less than $50!

Not anymore!  Still not as much as you are paying on the E. coast but the last time I found some it was either 80 or 90.

Response:

I too thought the same thing.  I generally don’t think of myself as old at 43 but there does  seem to be a ton of newbie’s around, just diagnosed, and in there early 20s only.  I could not even imagine seeing the doc for anything possible being MS until late in my 30’s – I would have not bean diagnosed but for a weird symptom that was looked into because I was pregnant at the time at 32 YO.  I feel for these youngsters (!) who are having similar problems at 22-24 YO..sigh. — Laura "Michael" <muirh…@haidagwaii.net> wrote in message

news:Lfudna9gv7WrXxvfRVn-1Q@qcislands.net… – Hide quoted text — Show quoted text -> Ooops!   I sent before saying anything.  :- > Sorry ’bout dat, Josiah. > Josiah Daniel Suarez wrote: >> Hi guys! Let me introduce myself real quick, I’m a 22 year old white >> male, and I was diagnosed with MS back in December of 2001. > You’re too fucking young for this crap.   News like yours gets in my > face. >> I’ve had 4 >> attacks total, including one just recently. I’m on Rebif >> (interferon), >> and was treated with a 3 day dose of Solumedrol (steroid) for this >> most recent attack. > Sounds pretty standard, so far. >> This attack has left me somewhat disabled due to a terrible >> shakiness >> in my entire body. Maybe disabled is the wrong word, I haven’t found >> any of my usual activities to be impossible, just extremely >> difficult! > Yep.   That’s been the case for each attack I’ve been through: none > has truly "disabled" me, but every one has left me with a new > (sometimes nasty) limitation or impediment to doing what I do.   I > haven’t given very much up entirely, but there is an increasing > number of things that take more energy, more concentration and/or > more adaptative creativity than they ever did before.  <shrug> > Life’s like that.   I’m happy the dx wasn’t metastatic brain cancer > (as the first sensible doc I saw about this stuff said it might be.) >> I wanted to ask if any of you experience this kind of a symptom, > Yep.   I’m dealing with  some mild myoclonus in my right lower back > for the past month or so.   I hate it, and it often really *hurts*. > Smoking a tiny bit of pot every few hours helps it quite a bit, but I > greatly fear I’ll soon be needing to give that up infavour of (or at > least supplement it with) some nasty chemicals. >>  and >> if so how you deal with it. I’ve heard good things about the drug >> Tegretol, has anyone tried it? > Tegretol (CARBAMAZEPINE) is a life-saver for many people… but it’s > a benzodiazepine (closely related to valium,) it’s very addictive > (not a real major concern, but it has important implications if you > have to stop taking it,) and it has some potential for causing > serious cognitive impairment. It’s also got some other (occasionally > severe) side effects that you should consider before you decide about > taking it or not. > Check out: > http://www.nationalmssociety.org/Meds-Carbamazepine.asp (good, basic > info… though it fails to list all the reasons for prescribing it in > MS symptom-management) > http://bipolar.about.com/cs/sfx/a/sfx_tegretol.htm (I’m bipolar and > this is important stuff, just in case) > Get used to reading up on meds and other treatments if you aren’t > already doing that.   A lot of it is of value to only a few people, > but you never know what treasures await only you amid all the dross.

Response:

Hi guys! Let me introduce myself real quick, I’m a 22 year old white male, and I was diagnosed with MS back in December of 2001. I’ve had 4 attacks total, including one just recently. I’m on Rebif (interferon), and was treated with a 3 day dose of Solumedrol (steroid) for this most recent attack. This attack has left me somewhat disabled due to a terrible shakiness in my entire body. Maybe disabled is the wrong word, I haven’t found any of my usual activities to be impossible, just extremely difficult! I wanted to ask if any of you experience this kind of a symptom, and if so how you deal with it. I’ve heard good things about the drug Tegretol, has anyone tried it? Josiah

Response:

- Hide quoted text — Show quoted text -Josiah Daniel Suarez wrote: > Hi guys! Let me introduce myself real quick, I’m a 22 year old white > male, and I was diagnosed with MS back in December of 2001. I’ve had 4 > attacks total, including one just recently. I’m on Rebif (interferon), > and was treated with a 3 day dose of Solumedrol (steroid) for this > most recent attack. > This attack has left me somewhat disabled due to a terrible shakiness > in my entire body. Maybe disabled is the wrong word, I haven’t found > any of my usual activities to be impossible, just extremely difficult! > I wanted to ask if any of you experience this kind of a symptom, and > if so how you deal with it. I’ve heard good things about the drug > Tegretol, has anyone tried it? > Josiah

Response:

Ooops!   I sent before saying anything.  :- Sorry ’bout dat, Josiah. Josiah Daniel Suarez wrote: > Hi guys! Let me introduce myself real quick, I’m a 22 year old white > male, and I was diagnosed with MS back in December of 2001.

You’re too fucking young for this crap.   News like yours gets in my face. > I’ve had 4 > attacks total, including one just recently. I’m on Rebif (interferon), > and was treated with a 3 day dose of Solumedrol (steroid) for this > most recent attack.

Sounds pretty standard, so far. > This attack has left me somewhat disabled due to a terrible shakiness > in my entire body. Maybe disabled is the wrong word, I haven’t found > any of my usual activities to be impossible, just extremely difficult!

Yep.   That’s been the case for each attack I’ve been through: none has truly "disabled" me, but every one has left me with a new (sometimes nasty) limitation or impediment to doing what I do.   I haven’t given very much up entirely, but there is an increasing number of things that take more energy, more concentration and/or more adaptative creativity than they ever did before.  <shrug>   Life’s like that.   I’m happy the dx wasn’t metastatic brain cancer (as the first sensible doc I saw about this stuff said it might be.) > I wanted to ask if any of you experience this kind of a symptom,

Yep.   I’m dealing with  some mild myoclonus in my right lower back for the past month or so.   I hate it, and it often really *hurts*.  Smoking a tiny bit of pot every few hours helps it quite a bit, but I greatly fear I’ll soon be needing to give that up infavour of (or at least supplement it with) some nasty chemicals. >  and > if so how you deal with it. I’ve heard good things about the drug > Tegretol, has anyone tried it?

Tegretol (CARBAMAZEPINE) is a life-saver for many people… but it’s a benzodiazepine (closely related to valium,) it’s very addictive (not a real major concern, but it has important implications if you have to stop taking it,) and it has some potential for causing serious cognitive impairment. It’s also got some other (occasionally severe) side effects that you should consider before you decide about taking it or not. Check out: http://www.nationalmssociety.org/Meds-Carbamazepine.asp (good, basic info… though it fails to list all the reasons for prescribing it in MS symptom-management) http://bipolar.about.com/cs/sfx/a/sfx_tegretol.htm (I’m bipolar and this is important stuff, just in case) Get used to reading up on meds and other treatments if you aren’t already doing that.   A lot of it is of value to only a few people, but you never know what treasures await only you amid all the dross.

Response: