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If your pissed the shoe must fit.
September 24th, 2008 by Chris

No I am not saying that.  Some of you can’t do this and it sucks.  Some of you HAVE TO be where of you are.  Some of you are perfectly happy being where you are and it’s to those people I don’t get.

I was the person perfectly happy.  I waited to long to do something and this is what I am now.  Nothing.  A gimp.  It’s my own fault because I waited until 2004.

Now there are treatments everywhere to stop this and some people are actually dumb enough to say to me, “Oh I think I’ll wait to try something.  I feel fine.”

OK, you wait, see what happens.  Watch my videos to know what happens to those who wait to long.

You are trying and I applaud you.  You at least are exercising options.   I have no respect for those who get cancer and don’t get a second opinion.  If they say you are going to die what have you got to loose?  You try other things.

The only thing this disease is going to give you is disability and thats it.  It’s gaurantee’d.  What have you got to loose?  Every person out there with a active lesion in their heads just be doing this.  No reason I am getting better and others are not.  Just my opinion.  You may get sick for a week.  But then again after that week you may be like Davis, Mel, Sandy, Kathy, Me and etc.

So others who have MS would rather yell at me in emails about how I have helped others get this.

Most of these folks I speak of are people who are the select few who are in a loosing battle and still won’t admit they need to try something else.  Some folks still won’t admit what they are trying is loosing.

So again I use the cancer analogy.   If you have cancer and are dying anyhow what have you got to loose?   If you are guaranteed to become a cripple, rather than sitting there accepting, why not try something else?

Also one person named Sandy and Rod (Sandy has MS) has had this disease for 22 years.  Go to www.thisisms.com in the Revimmune forum to see her results.  Age nor time seems to matter.

A reduction in new lesions is a wonderful treatment.  I want no lesions and the ones I have getting better.  I got it.

JH and Rush both go to war against the insurance company.  I had to wait 6 weeks for the battle to be won but they did win.  Let them get it cleared for insurance.  If they said no, contact all of us who have had the treatment and get us to help.  We will help for sure!!

The good Lord helps those who helps themselves.

This guy Bob showed me the clip that got me interested.  This guy named HiCy in a forum told me to contact JH.  I was the one who did the work from that point.  If insurance said no I was going to try again just with a butt load of information I’m providing.  I’m sure JH showed them all of it but I was going to as well.

No offense folks but if you want to ask me questions as to why I write stuff on my site it’s OK.  I can assure you there is a reason I say what I do. Don’t chew my ass on my site.  Ask it to me. I didn’t go through a childhood involving watching one parent try to commit suicide, 8 years of cocaine and meth addiction, and 10 years of MS to sugar coat anything.  I am happy to say all my demons from the past except one is gone and I am free minded.  If you don’t like the fact I am honest and blunt tough.  If you want nice in some of these cases you best go talk to the mirror because unfortunately some subject matter gets me riled up.

I look forward to all of you one day having what I have had and experiencing what I am.  It thrills me to know there is something out there that really does provide one of the three cures we all seek.  It pisses me off everyone of you doesn’t have this yet, but alas, it will be soon.

Beware, it wrecks your hair but improves your quality of life!

17 Responses to “If your pissed the shoe must fit.”
  1. Ally Says:
    September 24th, 2008 at 10:54 am

    You are soooo right about people saying they feel fine, they will wait. I cant tell you how many forums I have been in where people either dont want to take the meds offered (as effective or not as they may be) because they are afraid of the side effects. or they just cant be bothered injecting everyday or once a week. Yes those people will not go for revimmune if they cant even handle a effing needle.

    Gee I think the side effect of MS is much more frightening vs anything a med can throw at me. OR you get the people who claim eating healthy has prevented attacks and their MS progressing. mind you this is usually coming from people who were recently dx, under 5 years.

    I think once they get kicked in the head with this disease and finally realize how evil it really is, they just dont get it! Disability only happens to other people ya know. MS neuro’s lie their ass’s off to us trying to convince us that not everyone gets disabled or gee you’re looking so good and doing great dont worry and keep us on anti depressants.

    Chris do you know when this treatment will be offered at other locations? I know JH is going to be doing phase III. I wonder if they will continue open label after that.

    Do you know why they stopped doing open label?

  2. Chris Says:
    September 24th, 2008 at 11:11 am

    No clue, but, if you emailed Carrie she would tell you I bet.

    Do you know for certain they have all the people they need for the Phase III coming up?

  3. ally Says:
    September 24th, 2008 at 11:19 am

    No I dont know. But I am not interested in participating in phase III because I risk a 50% chance of getting the placebo. I guess I understand why they need to do it this way for reserch purposes, but it also seems a bit unethical to me. There are so many of us suffering.

  4. Chris Says:
    September 24th, 2008 at 11:25 am

    Even the placebo dose seems to end progression. It’s the Harvard Dose. It wont be enough to provide neurological improvement.

    The Neurological improvements are what the endpoints of the trial are in addition to MRI results.

  5. ally Says:
    September 24th, 2008 at 12:16 pm

    I wondered what they did with the placebo. So really it’s not a placebo, just a lower dosage?

  6. Chris Says:
    September 24th, 2008 at 1:28 pm

    I don’t remember if it was Dr. Kerr or someone else there at JH that told me that.

    Either way from my understanding everyone should see some benefit. It’s just those who get the real dose will get better and better.

  7. ally scardy cat Says:
    September 24th, 2008 at 2:03 pm

    maybe I will give carrie a call.

    Is it so wrong to be scared though, I do want to get better but the chemo scares me. I dunno I feel like I am on the fence on this treatment sometimes. maybe because my brain is damaged from the MS and I am not thinking right that makes me like this. I just know I want to raise my little kids and be a normal healthy mom. Right now I have good and bad days, I cant imagine what I will be like 5-10 years from now. Heck even next week something could happen.

    Today my muscles ache so bad, changing a diaper is a chore.

    I just am a little scared I suppose. But also I am tired of being scared everyday having MS hanging over my head. That SUCKS.

  8. Chris Says:
    September 24th, 2008 at 2:52 pm

    No it’s not wrong. If the docs told you the cancer is only going to go away with chemo you would do it.

    MS doesn’t have tumor and won’t kill you as quick but to me it seems worse than cancer.

  9. pvns2005 Says:
    September 24th, 2008 at 9:49 pm

    - 3 Month Post HiCy MRI results –

    Brain: Interval improvement with resolution of enhancement in all the previously enhancing lesions in both cerebral hemispheres. The extensive demyelation in the supratentorial brain, pons, cerebellum and brainstem is stable. In fact, all previously enhancing lesions in both cerebral hemispheres no longer demonstrate enhancement.

    Cervical Spine: Stable multifocal cervical cord demyelation and focal cord atrophy at C4. Again, no enhancing lesion is seen.

    Thoracic Spine: Stable multifocal thoracic demyelation and cord atrophy. Again, there are multifocal fairly extensive demyelating plaques throughout the thoracic cord. These are stable in size and number and again none demonstrate any abnormal enhancement.

  10. pvns2005 Says:
    September 25th, 2008 at 8:44 am

    My MRI has never shown no activity in the 11 years I have had MS.

  11. Sandy Says:
    September 25th, 2008 at 9:28 am

    Congrats pvns!!!
    Chris, I understand that you’re pissed (but at least you’re not pissing yourself). I was in that state of blissful denial for the 15 years that my disease was completely stable and I had no disability or disease activity on MRI’s. When this disease became aggressive I kept telling myself, “This is not MY MS!!” It just wasn’t supposed to be me. I waited too long. I can relate because I was one of those people who thought they could never go thru this barbaric treatment. Now, we are both stuck in this very unusual, rare purgatory. We don’t have MS right now, but we are still fighting the battle to claw our way out. In many ways I can see it more clearly than before. I find that I am even more pissed as hell at the disease for what it did to us and is doing to so many others.

    Sandy

  12. Miss Chris Says:
    September 25th, 2008 at 2:07 pm

    Hi there,
    I saw you on Linda’s links over at “Braincheese”. I’ve been a reader of hers for years! I’m on a “new” treatment for my MS and I feel so good I forget I have MS most of the time! I’m on LDN. No side effects other than forgetting you have MS. Can’t beat that!

  13. Chris Says:
    September 25th, 2008 at 2:09 pm

    I was LDN for 2 years and I believe it helped stop me from shaking.

    Good luck to you.

  14. ally Says:
    September 26th, 2008 at 4:11 pm

    pvns thats great news!! I love hearing all these positive stories. Gives me hope!!

  15. Sharon Says:
    September 29th, 2008 at 10:17 pm

    Chris – glad everything is still improving for you. Like pvns – my MRI’s have never shown enhancement, so I am unable to be treated at JH. If they finally decide to treat SPMS, then I will try (my age of 65 could be a problem though). Right now I’m stable, and with the use of my WalkAide I can do just about anything – except stairs!! Too bad Marleta doesn’t have a program for stairs.—–Anyway, keep well and enjoy the beautiful Fall weather we are having in Denver.

  16. Keri Says:
    October 2nd, 2008 at 2:31 am

    Hi Chris,

    I’m going for my 3 month MRI on Tuesday. I’ve been feeling icky lately, afraid it’s an exacerbation…but have told myself it’s more likely an infection or something that is aggravating things. To top it off, it has been 100+ degrees here for almost 2 weeks!

    As for battles with insurance companies – I do believe they are coming around. Several of us were approved quickly. I know I was approved immediately (like while JH was on the phone with them!). So, this is great news for people.

    I’m thankful every day for you, your site, and of course, HiCy!!

    ~Keri

    ps/I have ALWAYS gotten irked by people who say they will wait and see. I agree with the cancer analogy. Most people dx with cancer weren’t feeling sick to begin with and won’t ever…the chemo makes them sick….but yet, I don’t know many people (okay ANY people) who say they will wait for the cancer to make them feel sick before they go for tx!!

  17. jamie Says:
    October 2nd, 2008 at 9:19 am

    Keri,

    It’s not an exacerbation.

    It’s heat and the the rapid recovery slowing down.

    Mel had exactly the same, then had the follow up and was clear. SOME LESIONS HAD SHRUNK, THERE WAS NO ENHANCEMENT AT ALL.

    It’s up and down but the trend is up.

    Look at the campath guys who two years later could suddenly run. Not going to happen for everyone of course but just the chance of it happening is a new development.

    What other treatments have offered a chance of improvement? Ever?