They feed me .....I have arrived to this stage.

[Grassman]

I figure my speach wil be the next loss.

My god ms moves along.....taking everything.....except my will.....to survive.

[Abby2006]

No words just a hug Mike,

Abby

[graymalkin]

Your will to survive, and the strength of your spirit, is a shining beacon to all of us, Mike. Thank you for being you!

Hugs from me, too.

graymalkin

[0357]

IMO your will to survive is what's important. Hang in there! I know it has its trying moments; during an acute attack at the end of a 4 year period I was 9.5 on the Kurtzke Scale. Enjoy those around you...

Nice hearing from you...Hugs.

[Linda]

My thoughts are with you, Grassman.

[Whisper]

((((((((((((Mike))))))))))))))

Lorraine:)

[mmcc53]

I'm sorry.

How are you able to type?

[renee]

Love your spirit, Grassman.

May I play on your team?
Body slam or mega hug- your choice.

r-woman

[Abby2006]

Good question, how do you type Mike?

Abby

[mooksc]

My thoughts are with you. Big (((((Hugs)))))


mooksc

[lady_express_44]

Mike, you have no idea how much love and admiration I (and others) have for you. http://i12.photobucket.com/albums/a225/lady_express_44/rose.gif

You are my inspiration. :)

Sometimes life's not fair, and that's why god invented duct tape.

http://i12.photobucket.com/albums/a225/lady_express_44/duck.jpg

Cherie http://i12.photobucket.com/albums/a225/lady_express_44/smoke.gif

[Bimse]

You are my hero, Grassman.

[curiousforever]

hugs honey...keep up the fight.

[SalpalSally]

Ditto from Sally.;)

[Jiane2]

Mikey...

Love your spirit...here's hoping God will take a break.

Hugs and kisses...

Keep your stick on the ice,

Jiane2

[Virginia]

Sorry that things are this bad for you. I admire your spirit and your will. I hope there are people there to encourage and love you.

Virginia

[*Joy*]

Sometimes life's not fair, and that's why god invented duct tape.

http://i12.photobucket.com/albums/a225/lady_express_44/duck.jpg

Cherie http://i12.photobucket.com/albums/a225/lady_express_44/smoke.gif


I have no idea what this means. Not that I have to understand it but it's always nice to understand threads. What does grassman's worries about speech problems and being fed have to do with opinions or duct tape?

I'm sorry to hear about this, grassman. I hope it's a temporary situation for you.

The 'how do you type?' question is a good one. Your answer might help others out there who are struggling with that very issue.

Let us know how you're doing.

[lady_express_44]

I have no idea what this means. Not that I have to understand it but it's always nice to understand threads. What does grassman's worries about speech problems and being fed have to do with opinions or duct tape?

If you really NEED to know . . . Mike and I are good friends, and I happen to know that he has a thing for duct tape.

When I thought of the unfairness of not being able to talk, this duct tape joke came to mind.

I hope that it was not taken in a bad way by anyone.

Cherie

[curiousforever]

I joke about duct taping my boys all the time.

well...we use 100 mile an hour tape as hubby is military.... :)

[Jakaloke]

I joke about duct taping my boys all the time.

You only joke about it? You mean you're not really supposed to duct tape your kids? I'd better go get some scissors!

Scott

[frame]

start taking a medicine

[curiousforever]

You only joke about it? You mean you're not really supposed to duct tape your kids? I'd better go get some scissors!

Scott


:)

That got a huge smile!

[SalpalSally]

start taking a medicine

Is this suggestion for Mike? If so, what Med do you suggest for Progressive MS?

[mmcc53]

If you really NEED to know . . . Mike and I are good friends, and I happen to know that he has a thing for duct tape.

When I thought of the unfairness of not being able to talk, this duct tape joke came to mind.

I hope that it was not taken in a bad way by anyone.

Cherie
I don't think you NEED to get huffy. It did sound wierd. Explanations always help.

Since you are good friends, maybe you know something more about how he is doing?

[mmcc53]

Is this suggestion for Mike? If so, what Med do you suggest for Progressive MS?

I didn't make the suggestion, but Novantrone has done wonders for a fair number of people with progressive MS. From reading Mike's postings over the years, I know he prefers grass, but with his situation deteriorating so much, it might be worth considering the Novantrone. It is one of those rare treatments which is not limited to relapsing MS.

[Grassman]

Thanks guys....I hope I can type well into the future.

This MS is hard as you all know......ahhh I'm not sureof these maybe this will help pharme drugs are the answer.

Anti biotics ya.

Tylenol 3's ya

Cipro ya

I dunno...but I got good care.

[lady_express_44]

Nice to hear from you Mike. :)

I don't think you NEED to get huffy. It did sound wierd.

If you two don't EVER "get" me, why not just put me on ignore?

Thank you!!

Cherie

[stickman]

I always wait to see your posts mike. peace.

[*Joy*]

Nice to hear from you Mike. :)



If you two don't EVER "get" me, why not just put me on ignore, ***XX? (the Xs represent mmcc's personal name which has now been deleted)

Thank you!!

Cherie

"if you two" includes me, I guess. :confused:

I think I "get" you 99.9 of the time. I didn't say I needed to know anything, I wanted to know. I also didn't say that you'd done anything wrong. It sounded strange, that's all. I say odd things sometimes and I welcome people to ask me anything they'd like to ask.

Thank you for the reply.

And as to putting you on ignore. I don't put anyone on ignore. Never have. Everyone here has an opinion worth sharing and heartbreak that needs to be heard. I'm here to listen even if my opinion is worthless to some.

Edited to add: What was strange to me wasn't the duct tape part, I've read grassman's posts about the use of duct tape. What I found strange was the "when I want your opinion" part. I had no idea what that meant in context of the thread. It was a private joke apparently.

[*Joy*]

grassman, good to see you back typing at us. :)

peace backatcha

[mmcc53]

Lady_Express_44,

I have asked you several times before not to use my name. I do not use it here, and if I wanted it publically known, I would sign my posts that way. Please delete it and please stop using it.

PS - you also spelled it incorrectly.

-mmcc, mmcc53, whichever you prefer

[Matt]

I figure my speach wil be the next loss.

My god ms moves along.....taking everything.....except my will.....to survive.

Hang in there mike, and remember that you can't predict MS. You really might not loose speech.

[lady_express_44]

Lady_Express_44,

I have asked you several times before not to use my name. I do not use it here, and if I wanted it publically known, I would sign my posts that way. Please delete it and please stop using it.

PS - you also spelled it incorrectly.

-mmcc, mmcc53, whichever you prefer

Your name was all over BT before it went down, and has been used here since the board was reopened:

http://brain.hastypastry.net/forums/showthread.php?p=10168#post10168

My apologies for the incorrect spelling.

Cherie

[Matt]

Please delete that Cherie. She might have missed one case where someone used it.

She just said that she doesn't want it used, and she has asked YOU not to use it before.

[agate]

Cherie, there's another good reason for not using mmcc's real name. There could be confusion because there's another member here with the same first name (confusedNY), who does use it in her posts.

[lady_express_44]

I don't mind deleting mmcc's name, and it has been done.

Cherie

[graymatters]

Geez Mike
What the **** did I miss? while BT was down
Sorry you are in this way...can you still do a doobie?
You know the suggestion of trying a new med may not be a bad one.

You're a fighter...kick Ms's butt with whatever they have out there!
love heading your way
tere

[agate]

Mike, maybe you shouldn't decide your speech will be the next thing to go. You could just as easily decide that MS has taken all that it's going to take from you, and it's going to stop taking from you from now on.

It does that for some people, or so they say. It burns itself out, reaches a plateau--however you want to put it. You might as well be one of those people.:)

[paj]

Hey Mike,

I am sorry to hear that you are having more trouble. But I am glad to see you are still posting.

I don't always respond, but I admire your spirit and gumption!

Sending something positive your way.....thoughts, hopes, prayers, whatever you wish. ;)

paj

[frame]

Is this suggestion for Mike? If so, what Med do you suggest for Progressive MS?

yeah. i was under the impression that he wasnt taking any meds, just smoking pot.
and as for the progressive ms, id suggest... oh i dont know... ANYTHING that helps combat the disease.

i have a pretty ****ed up form of ms, just fyi

[SalpalSally]

yeah. i was under the impression that he wasnt taking any meds, just smoking pot.
and as for the progressive ms, id suggest... oh i dont know... ANYTHING that helps combat the disease.

i have a pretty ****ed up form of ms, just fyi

I'm so sorry for your ****ed up form of MS, Frame. Are you on any MS Med and if so, what? And is it helping you a all?

The grass is not going to cure MS, but then, none of the other Med are either. If one of them could help Mike to have a better quality of life, then I would say go for it. I suggest LDN then, because it may help and won't hurt him, unless he's allergic to it. The other Meds can all have nasty side effects, but it's HIS choice.

Love to you, Frame and to you, Mike.:)

[avalonai2]

Mike, stay up buddy positive!

[dagaz]

Mike I lost my speach and my ability to walk and also had tremmors to a point I was unable to feed myself or brush my teeth. I was put on massive doses of steroids to get me out of that exacerbation. Please don't give up ... I really thought I was going to die at that point. The Dr's brought in a priest ... needless to say why... you can beat this ... don't give up! When I had that exacerbation I couldn't even breath on my own the day they called a priest in, they called my husband in at 3 AM because they said I wasn't going to make it until the morning.

So if I can get through that you can do this...I've known you for long enough and you can, don't get down on your self... this is an occipital lobe attack it is plaque on that area of the brain that causes these sorts of exacerbations and they suck.. But along with the grass you might want to try some steriods.:(

Good luck... let me know how your doing .... Dagaz

[mmcc53]

...The grass is not going to cure MS, but then, none of the other Med are either. If one of them could help Mike to have a better quality of life, then I would say go for it. I suggest LDN then, because it may help and won't hurt him, unless he's allergic to it. The other Meds can all have nasty side effects, but it's HIS choice....

Mike, of course its your choice, but given how your condition has deteriorated, how bad can the side effects be by comparison?

Grass is all well and good, but there is zero chance it will improve your condition. Have you tried Novantrone or Tysabri? Steroids? C'mon, you need to fight back, not just smoke dope and watch MS destroy your quality of life.

[Linda C]

I HAVE followed your post ever since I came to the community. The will to go on is very special. I think that is our mission from the higher power. It will change and the key is to keep in tune so you can carry on. So keep on keeping on, we need you.
I use to post as Pressbe before the crash.

[xo++]

Hi mmcc,

Mike can speak for himself, but I wanted to respond to your post too.

First, you're simply flat-out wrong that marijuana has zero chance of helping Mike's condition:

Cannabinoids inhibit neurodegeneration in models of multiple sclerosis. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12876144&query_hl=1&itool=pubmed_docsum)

The therapeutic potential of cannabis in multiple sclerosis. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12665412&query_hl=1&itool=pubmed_docsum)

The therapeutic potential of the cannabinoids in neuroprotection. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12387700&query_hl=1&itool=pubmed_docsum)

Cannabinoid-mediated neuroprotection following interferon-gamma treatment in a three-dimensional mouse brain aggregate cell culture. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15525268&query_hl=7&itool=pubmed_docsum)

Towards cannabis and cannabinoid treatment of multiple sclerosis. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15510238&query_hl=7&itool=pubmed_docsum)

Secondly, I believe Mike has primary progressive disease. (If I'm wrong, ignore what follows.) We have seen no substantial randomized, blinded, controlled clinical trials of Novantrone or Tysabri or steroids which demonstrate that they would have any effect at all on Mike's MS.

So I personally think it is not only rational but prudent for Mike to avoid dangerous drugs unproven to do anything to help someone with his condition. The pharmaceutical company website (http://www.novantrone.com/patients/novantrone/indication.jsp) is clear on Novantrone:

"Novantrone® is not intended for use as a treatment for people with primary progressive multiple sclerosis."

Certainly there is no clinical trial evidence demonstrating that Tysabri is effective in primary progressive disease.

Mark

[Matt]

I have known two people who were prescribed cytoxan for primary progressive MS. There is little if no hard data to support it's use. It can dammage the heart. This can be a problem, since pneumonia can require a strong heart to make it through. But, there is some anecdotal evidence supporting it's use.

[xo++]

Matt,

We have seen a number of Cytoxan trials in progressive MS. Almost all well-designed trials were failures. This led the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and The MS Council for Clinical Practice Guidelines to conclude in its report (http://www.neurology.org/cgi/content/full/58/2/169/DC3) regarding Cytoxan (p. 31):

"Based on consistent Class I evidence, pulse cyclophosphamide treatment does not seem to alter the course of progressive MS (Type B recommendation)

Based on one Class III study, it is possible that younger patients with progressive MS may derive some benefit from pulse plus booster cyclophosphamide treatment (Type U recommendation)"

And the very significant risk of bladder cancer from Cytoxan (> 10% after 15 years, depending on dose) should give anyone pause.

(Nevertheless we have seen people here who benefitted from Cytoxan.)

Mark

[Grassman]

When I first got MS my neuro said wemay be able to stop people from getting MS why try and fix you guys who got it....once your dead why bother.

[SalpalSally]

When I first got MS my neuro said wemay be able to stop people from getting MS why try and fix you guys who got it....once your dead why bother.

:eek: :eek: I wonder if your Neuro took the Hypocratic Oath or the Hippocritic Oath..:D

[mmcc53]

When I first got MS my neuro said wemay be able to stop people from getting MS why try and fix you guys who got it....once your dead why bother.

Okay, you saw an idiot.

It is your health, not his - have you considered trying a REAL neuro instead of a fool?

[PwMS]

isn't it true that the medical establishment is beginning to wonder if ms is not one disease but instead possibly several different diseases? and therefore that is why some of us do so well on the treatments and others do so poorly?

for every study that says a certain group does not benefit from that drug, i have heard of ones that do. i have a good friend with ppms who was progressing very quickly until cytoxan stopped her progression in its tracks, even 4 years later.

when you are progressing as fast as she was and i am (and others appear to be here), imho the study results don't mean nothing -- especially when your edss is close to 10 ... :(

[xo++]

First, without the studies, we wouldn't be able to choose between Noni juice and Novantrone. If our choice of therapies was based on "I've heard as many positive reports as negative ones" rather than the results of actual well-designed clinical trials, we might as well employ fortune tellers.

The consensus of the American Academy of Neurology is that Cytoxan (except perhaps for younger people) does not alter the course of progressive MS. This consensus is not based on reading tea leaves, or anecdotal reports, but based on the results of well-designed clinical trials. (And yes I've read the open label (i.e. poorly designed) studies in which Cytoxan appears effective even in primary progressive MS.)

Secondly, with respect to Cytoxan, we've also had people here permanently damaged by the drug. People have died as a result of the use of the drug. Ditto for Novantrone.

My point is that someone who chooses not to do Cytoxan or Novantrone who is primary progressive should not be chided for making a stupid decision, or for giving up, or for not doing enough for themselves. The consensus of the medical community is that no disease-modifying therapy has been proven effective for people with primary progressive MS, so avoiding an unproven dangerous drug is a rational decision. (We all have our fingers crossed for rituximab.)

I certainly don't think anyone is wrong who takes a chance that Cytoxan or Novantrone will work for them. I understand why someone would choose this path, and I might make this choice myself if I were in that position.

I'm very close to someone with a high EDSS score, and she has chosen not to take the chemos or steroids. She's absolutely brilliant. I understand her reasoning completely.

I've watched people close to me die from cancer grasping at chemo which destroyed what little quality of life they had left. I know people who chose not to do such chemo. I don't think there is one right answer. I get annoyed in these sorts of situations when people imply there is one right answer and whoever makes the other choice is wrong and should be admonished.

Mark

[Matt]

Mike, your neuro certainly didn't need to say that.

[*Joy*]

Hi Mark,

I'm fascinated by the articles you've posted. I didn't realize (dumb me, slap forehead) there was evidence that marijuana slows MS progression! I've read tons of antidotal evidence suggesting symptom relief but not this.

Wow.


The therapeutic potential of cannabis in multiple sclerosis. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=12665412&query_hl=1&itool=pubmed_docsum)

Quote from the article:

"The problem with cannabis as a drug is that both the positive and negative aspects are largely the work of the same receptor."

Mark, what does this mean? What are the the negative aspects? Is there a serious downside to it? (Other than going to jail, yikes, it's not legal where I live) I have to admit I'm a chicken about spending in time is a cold jail cell.

How are they delivering marijuana to the animal models? :) HAHA! Maybe the mice are smoking little joints.

If it's a pill or a shot, how do they know smoking will deliver the same benefits? And, more importantly, what is the proper dosage to get the benefits? One joint? Two joints? Ten joints a day?

And what about the quality of marijuana? There are different kinds, yes? Will this not affect marijuana therapy?



Towards cannabis and cannabinoid treatment of multiple sclerosis. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15510238&query_hl=7&itool=pubmed_docsum)

Quote from the article:

"This has led some multiple sclerosis patients to self-medicate with cannabis, which anecdotal evidence suggests may be beneficial in controlling symptoms such as spasticity, pain, tremor and bladder dysfunction."

Spasticity and PAIN caught my attention immediately. There isn't, to my knowledge, a very good universal language of pain. What sort of pain do you think they are talking about? I'd do anything within reason to rid myself of TN pain and stop taking these liver killing pills every day, day after day after day.

"Currently, a number of large-scale phase III clinical trials are under way to further elucidate the use of cannabinoids in the symptomatic treatment of multiple sclerosis. "

This article is from August 2004. Are there any published results yet? Again, I did not know there were phase III trials going on.


These are serious questions. Believe me, I'd smoke a donkey turd if I thought it might stop this stupid disease and stop the pain.

Thanks for any information you can provide.

[*Joy*]

When I first got MS my neuro said wemay be able to stop people from getting MS why try and fix you guys who got it....once your dead why bother.

Mike,
This sucks. Was it a long time ago? Do you have a doctor now who will be there for you when you need a doctor's care? I don't necessarily mean a neuro, a family doctor or general practioner.

Just concerned

[xo++]

Hi Joy,

Yes, a problem with smoking it is inconsistent amounts of active ingredients although with the liquid spray, within limits you use it until you receive relief, if used for pain (see below). One way they know it's working is the treatment patients use a lot less than the placebo patients.

I think the negative effects they're talking about are those generally associated with getting high. :)

I have included an abstract of a clinical trial of Sativex, an oromucosal spray, which is close to liquid marijuana -- natural THC plus cannabidiol. This trial demonstrated that the drug is effective on central pain in MS, and the drug has been approved in Canada for neuropathic pain.

Sativex is now in a large phase III trial for pain relief in cancer patients in the US. (See here (http://production.investis.com/gwp/pressreleases/currentpress/2006-01-04/)). Sativex was proven effective (where morphine was not) in cancer patients in a randomized, blinded, placebo controlled trial of 177 cancer patients in Europe.

Further Sativex has begun a larger phase III trial (over 200 patients) in MS for central pain following up on the earlier trial listed below. (See here (http://www.gwpharm.com/news_press_releases.asp?id=/gwp/pressreleases/currentpress/2006-08-09/).)

Neurology. 2005 Sep 27;65(6):812-9.

Randomized, controlled trial of cannabis-based medicine in central pain in multiple sclerosis. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16186518&query_hl=11&itool=pubmed_docsum)

Walton Centre for Neurology and Neurosurgery, University of Liverpool, Liverpool, United Kingdom. djrdjr@doctors.org.uk

BACKGROUND: Central pain in multiple sclerosis (MS) is common and often refractory to treatment.

METHODS: We conducted a single-center, 5-week (1-week run-in, 4-week treatment), randomized, double-blind, placebo-controlled, parallel-group trial in 66 patients with MS and central pain states (59 dysesthetic, seven painful spasms) of a whole-plant cannabis-based medicine (CBM), containing delta-9-tetrahydrocannabinol:cannabidiol (THC:CBD) delivered via an oromucosal spray, as adjunctive analgesic treatment.

Each spray delivered 2.7 mg of THC and 2.5 of CBD, and patients could gradually self-titrate to a maximum of 48 sprays in 24 hours.

RESULTS: Sixty-four patients (97%) completed the trial, 34 received CBM. In week 4, the mean number of daily sprays taken of CBM (n = 32) was 9.6 (range 2 to 25, SD = 6.0) and of placebo (n = 31) was 19.1 (range 1 to 47, SD = 12.9).

Pain and sleep disturbance were recorded daily on an 11-point numerical rating scale. CBM was superior to placebo in reducing the mean intensity of pain (CBM mean change -2.7, 95% CI: -3.4 to -2.0, placebo -1.4 95% CI: -2.0 to -0.8, comparison between groups, p = 0.005) and sleep disturbance (CBM mean change -2.5, 95% CI: -3.4 to -1.7, placebo -0.8, 95% CI: -1.5 to -0.1, comparison between groups, p = 0.003).

CBM was generally well tolerated, although more patients on CBM than placebo reported dizziness, dry mouth, and somnolence. Cognitive side effects were limited to long-term memory storage.

CONCLUSIONS: Cannabis-based medicine is effective in reducing pain and sleep disturbance in patients with multiple sclerosis related central neuropathic pain and is mostly well tolerated.

Mark

[paj]

I'm very close to someone with a high EDSS score, and she has chosen not to take the chemos or steroids. She's absolutely brilliant. I understand her reasoning completely.

I've watched people close to me die from cancer grasping at chemo which destroyed what little quality of life they had left. I know people who chose not to do such chemo. I don't think there is one right answer. I get annoyed in these sorts of situations when people imply there is one right answer and whoever makes the other choice is wrong and should be admonished.

Mark

I have to agree whole heartedly here. No one can or should make those decisions for someone else and we all have to determine our own risk/benefit ratio so to speak.

This is one of my "hot buttons". People who think they KNOW the right decision, might be right for them, but who says what is right for someone else.

paj

[*Joy*]

Hi Joy,

I think the negative effects they're talking about are those generally associated with getting high. :)

Mark


That's a negative? :)


Thank you so much for your reply! I have company coming so I have to sign off for a while. I'll be back to read your post more carefully. I notice it even helps with sleep disturbances. I have a problem with that too. Been on Ambien for years.

[dizzyintx]

Secondly, with respect to Cytoxan, we've also had people here permanently damaged by the drug. People have died as a result of the use of the drug. Ditto for Novantrone.

My point is that someone who chooses not to do Cytoxan or Novantrone who is primary progressive should not be chided for making a stupid decision, or for giving up, or for not doing enough for themselves. The consensus of the medical community is that no disease-modifying therapy has been proven effective for people with primary progressive MS, so avoiding an unproven dangerous drug is a rational decision. (We all have our fingers crossed for rituximab.)

I certainly don't think anyone is wrong who takes a chance that Cytoxan or Novantrone will work for them. I understand why someone would choose this path, and I might make this choice myself if I were in that position.

I'm very close to someone with a high EDSS score, and she has chosen not to take the chemos or steroids. She's absolutely brilliant. I understand her reasoning completely.

I've watched people close to me die from cancer grasping at chemo which destroyed what little quality of life they had left. I know people who chose not to do such chemo. I don't think there is one right answer. I get annoyed in these sorts of situations when people imply there is one right answer and whoever makes the other choice is wrong and should be admonished.

Mark

Mark is so right. As someone who has been so harmed by chemo, I do agree. We all need to make our own choices and no one has the right to belittle what choices we make. In it's defence, novantrone worked for me and worked quite well. I just got too greedy. I think it was a cumulative effect that damaged my heart. After novantrone, I took rituxan(twice) and then cytoxan, all on my drs advice. I knew the risks, I gambled and lost, quite the same as when I go to Vegas!:D Mike with his neuros advice, has the right to decide for himself.

[curiousforever]

How ya doing Grassman?

[Una]

Yeah Grassman, I am wondering how you're doing too. I have been following this tread daily. You're an inspiration to me too. Worried abut you dude. Please let us all know how you are.


formally known as "mullinks"

[lady_express_44]

When I first got MS my neuro said wemay be able to stop people from getting MS why try and fix you guys who got it....once your dead why bother.

I don't know if there are any hard stats on whether MS is in fact becoming more prevelant (not just being dxed more accurately), but I would like to think that your neuro was trying to say that the goal is to "allocate funds on finding a cure so this doesn't continue to happen to future generations...". If that's the case, I happen to agree.

Perhaps I am getting cynical, but I don't think that all the years and $ that has been spent on researching for a "cure" (drugs) has added much benefit, at least for the majority of us. I know they recoup all that money, and a huge profit, so I guess it makes it all worthwhile for the drug companies . . . but I really don't think it has brought us much closer to cure, YET.

In fact, I don't think they even know yet, what KEY factor is the most critical in terms of prognosis; relapses, inflamation, demyelination, neuro-degeneration . . .? They also don't even know for sure if all forms of MS are even "MS" . ..

I want to know that they can stop this from happening to others, like my kids. I guess I don't really believe that the answer lies in popping a pill to make MS go away, like we do for an infection. I think something in our environment has to be changed, and when it is, MS will just stop occuring. If having more $ allocated is required, in order to determine the cause, that's probably what I want them to do. Too bad for me.

Cherie

[lady_express_44]

I'm very close to someone with a high EDSS score, and she has chosen not to take the chemos or steroids. She's absolutely brilliant. I understand her reasoning completely.

I've watched people close to me die from cancer grasping at chemo which destroyed what little quality of life they had left. I know people who chose not to do such chemo. I don't think there is one right answer. I get annoyed in these sorts of situations when people imply there is one right answer and whoever makes the other choice is wrong and should be admonished.
Mark

I agree, Mark . . . and very well put, btw.

We're all doing the best we can, based on our own personal fears, limitations, circumstances, and terms of reference. To each their own.

Cherie

[elizabeth]

Aren't you glad someone DOES feed you?! I hope it's good, whatever it is! ;)

Most of the time, I can feed myself, if someone else makes sure stuff is cut up for me, etc. I still "miss" enough that I don't want to wear something that's "dry clean only" to dinner, though! LOL :rolleyes: The biggest thing is that I get to spend time with my friends and family and enjoy time with them and their company. Who cares who controls the flatware, Mike?

Hang in there. LIFE moves along, whether we're ready or not. We're just along for the ride. :)

[Grassman]

Just got mout of the hospital.third time this year.

I am becoming a celeb with the nurses.

Thank god for who ever thought up hospitals.

Got pnumonia (sp) again.

Did I experience fine dining? NO

%The food is so you will. go home


Cherie.....ya made me think...,lets work on the

prevention.


When we asll meet in heaven.....only wse can ,play "You ever have this?"

Man nthis keeps coming.....Bring it on MS..

thanks everyone for your support.

In my next thread "Suicide" for Fun And Profit.


I already tried that...."No one in this life mgets out alive.

Hug your kids

[MDM]

Mike,

As always, I am truly blown away by your incredible genius.

I'm gonna go hug my kids.


MDM

[0357]

Grassman,

Glad you're back out of the hospital and back posting. Glad to hear from you!

0357

[Moonwolf]

Sorry. MS sucks.

[Marie-Catherine]

Mike,

thank you for letting us know how you are. And thank you for all you give to this forum. You are brilliant!

big hug from here

marie-jo

jo_marie2000@yahoo.fr
--------------------------
'chaque homme doit inventer son chemin'
Jean-Paul Sartre

[curiousforever]

Glad you're out of the hospital. Hope you're feeling better...

[lady_express_44]

((Hi Mike))

Nice to hear from you and sorry to hear that you ended up in the hospital again. :(

How about this snow? :eek: I bet you actually have your air conditioning turned off for a change though, eh?

I will pop by as soon as the roads clear a little - they are like an ice-rink right now!

Cherie

[renee]

Geez Mike.
I think this MJ thing is a Catch 22. It makes you feel good but its like smoking a carton of cigs a day.
(Used to smoke and enjoyed it- tobacco, mister.)

Would write more but braintalk won't acknowledge log-in on my home computer.
Remember I am thinking of you and
...you are known and admired as THE GRASSMAN among my family and circle of local pals.

-xor

[Grassman]

Yourkn own as that girl 6from NY.

[mmcc53]

For heaven's sake. I was not "belittling" Mark.

The point I was trying to make was that when things get really severe, maybe more risks are worth taking.

I lobbied in Maryland for the medical marijuana law (which passed). I am absolutely in favor of marijuana use for MS (as well as for recreational use for that matter). There is no doubt that it helps with MS symptoms for many people.

BTW I would not advocate Novantrone for people with mild MS or who are not progressing rapidly or who have not tried safer options. It helped me a lot, but the risks are substantial. For ME the risk was worth taking.

I am on Tysabri now and if it doesn't work, I doubt I will take Cytoxen - the risk/benefit level is too high for ME right now.

I think age is also a factor. Taking the riskier drugs is different for an older person than a 25 year old.

[xo++]

Hi mmcc,

Again Mike can weigh in here if he wants, but having read Mike's reasoning over the years, I was just jumping in to say that the choices he has made are reasonable.

I also thought you might not be aware that the medical literature is rife with suggestions that cannabis is not only a symptomatic therapy but perhaps a neuroprotective disease-modifying therapy as well.

I agree that an important factor in assessing the risk of a particular therapy is the condition of our health. If we are progressing rapidly, and if we have available some risky therapy which is proven to help people who are progressing rapidly, then the calculation of whether we may assume the risk may and perhaps should change.

But nothing has proven to slow the disease in people with primary progressive MS in large, well-designed trials. Novantrone has failed in trials in primary progressive disease, Cytoxan has consistently failed, and Tysabri hasn't been tested but Tysabri's known mechanism of action certainly would lead one to conclude it will not be helpful.

So to me the suggestion that someone (with PPMS) try these dangerous drugs is kind of like suggesting they pay a lot of money to go to some Caribbean island to try a therapy known to have dire side effects without any evidence of effectiveness. That's a bad bet to me. Yet I can see why people would do it.

I know your intentions were good -- you were trying to be encouraging and make helpful suggestions.

Mark

[Maine/Boston]

Mike,

You ae quite the celbrity and very well liked. Feel better soon and know everyone here is routing for you!

Jan

[Annie123]

Hey Mike -- I've been your faraway friend and fan for eight years now, go waaaaay back, and always appreciate your message -- power to the people and the plant!!

Peace and love, my friend

[*Joy*]

For heaven's sake. I was not "belittling" Mark.

The point I was trying to make was that when things get really severe, maybe more risks are worth taking.




mmcc, I'm sorry I didn't say this for you. I missed some of the subtleties behind some of the posts I guess. I wish people would just SAY "(insert member name here) you posted this and I think this about that".

I didn't think for even a flash of a millisecond that you were belittling anyone. As I read it, you were responding to Grassman's "they feed me... my speech will be next" by posting for him to fight - to not to give up.

People hear what they want to hear I suppose.

[Matthew's Mom]

Hi Mike,

Just to let you know I'm thinking of you.

Pam

[stillstANNding]

Hi Mike!

We had our first snow in Boston this morning. Beautiful big flakes that stuck to grass, cars, and skylights. It's gone now but the cold is seeping in. Probably one of those fronts from Canada:)

I hope you are near a window w a view.

Thanks for your threads,
ANN

[Spuggy]

Hi Mike wish duct tape could solve all of your problems.It's never that easy.

Thinking of you
Jacqui