rebooting at JHH

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Postby 777 » Thu May 15, 2008 9:34 am

I wouldnt want my pets with me since one is a 130 pound german shepherd. lol I do want my 2 children. that's my main concern.
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Postby 777 » Thu May 15, 2008 9:37 am

Jamie wrote:True! I'm not saying a dog is cleaner than a child! If my kid smelled like Spanky right now it'd be taken off me!

But a child is more likely to have/transmit infections that humans are susceptible to than a dog.

That's why the avian flu is such a story, once it starts to transmit easily to humans and more importantly human to human contact then we've got a problem on the biblical scale.


My husband brought that up. he said that he is already immune to a lot of stuff thats out there right now, our 2 year old and 11 week are not, therefore they would catch it most likely then transmitting it to me.

Dogs do not get human virus's.

As for cleaniness, dogs are dirty, but babies are always pooping thier pants. I guess he would be in diaper detail for the whole time we are there.
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Postby chrishasms » Thu May 15, 2008 7:39 pm

Breast feeding is a thing of the past I believe for at least a week. All body fluids for 6 days are toxic from the HiCy.
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Postby 777 » Fri May 16, 2008 2:13 am

I dont breast feed, never did with either one. So that's not a problem.
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Postby 777 » Fri May 16, 2008 3:59 am

chrishasms wrote:Per protocol you have to have someone of age with you 24/7 for 25 days you are there. The kids can be there I'm sure but they need to know Mom is gonna suck for a month.



They wont let you do this alone? I was thinking and didn't want my husband with me, I rather he stay home and watch the babies. I am one of those people when I dont feel well I prefer to be alone, plus I am embaressed about the hair loss. I just rather go for the treatment alone and have him pick me up in the airport when I come back home. lol

Thats just me.
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Postby chrishasms » Fri May 16, 2008 5:24 am

Well you can always pay for a really really expensive nurse.

The hair loss is better than the neurological loss. It's been 2 months and my hair is just now starting to fill back in.

I got to be real honest with you. The priorities you have over this disease make me wonder if you really don't want MS. I was so desperate to stop this disease if someone would have told me eating pig shit would do it I would have tried it.

Hair loss and having 24 hour care is way less than the damage MS is doing to you. In 2 years this will be a dream you are having while you are sleeping one night and having a dream about dreaming. Just remember everyday you have MS weather you feel it or not it is doing damage to your nervous system. If I would have been Diag'd when I should have been in the mid to late 90's with MS, I would have had an EDSS of around a 1-2 for 9 years. I woke up one day in June of 2004 not able to move my right leg. It has never came back and when this disease started to advance it did it in a hurry. I danced at my wedding in March of 2004. I was wheeled into JH one week after my 4th wedding anniversary.

I am a firm believer, and this is just my opinion because of what I have seen, if your MS isn't an issue now...just wait. It'll get you eventually. All of the folks I know who had MS for any length of time all said the same thing to me, "I was fine and then WHAMMO!" I had to have the whammo happen for me to even admit any issues and by then it was too late. I can't be convinced either any of the drugs would have helped because who's to say I'm one of the 33% it works on?

There are plenty of folks going through this now and I still have not heard of any adverse reactions except for throwing up. I won't get names but if there is an issue I'll find out about it. In the 2 months since I was there, and the more beds opened, I would guess they have got to be near 500-1000 treated so far.

If you had Non Hogkins Lymphoma would you think about it this much?
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Postby 777 » Fri May 16, 2008 5:40 am

I havent heard back from anyone tey to set up an appt. I talked ti Carrie twice and she said they definatly want to see me. That was her exact words, but of course that doesn't mean I will qualify. It's been about 8 weeks now. I am in no hurrym, honestly I rather enjoyt the summer and lay in the sun and swim vs recovering from chemo and staying in the house out of the sun. But we'll see.

I just hope I dont fly all the way put to baltimore for them to recommend I take tysabri or want me on some other treatment.

I might ask about if and when this is being offered at national jewish in colorado or here in Dallas. Much closer to home, I live in Dallas from from Colorado and both locations would be easier on me and my family.
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Postby chrishasms » Fri May 16, 2008 6:07 am

Well I know Rush in Chicago has been working on getting all the paperwork and stuff finished up since Feb of '07. I had someone who is waiting on them in Chicago contact me. He finally said the heck with it and went to MD.

The Jewish was a total guess. I just heard a place in Denver was going to be doing it. However if it's taken Rush this long, it could be next year before it's even close to ready in CO.

I had a horrid heat tolerance with my MS. I would be 100 times worse. Now it doesn't bug me. I'm going fishing on Sat. It's going to be 82. Here at 5000 feet as you know, it's like being under a magnifying glass. I just wear a big 'ol hat and some sunscreen. I've been outside quite a bit this week and I will be damned if I still can't get color. The Bactrim makes you sun sensitive. but you can adjust. In August I will be off it. The actual recovery from the treatment was a month for me. By April 15th all my blood counts were normal. Now I'm rehabbing from MS. The actual chemo recovery is around a month. Just a little tiredness. Gives you an excuse to lay around at home and enjoy the summer for a month.

I bet if you called Carrie she would say they are just waiting on you. No one they have brought in for an initial visit has not went back 6-8 weeks later to be treated from what I've heard.

It sound like you would still be able to enjoy summer unless you didn't want to. But maybe you are one of the lucky ones. Summer sets off a large amount of MS'ers exasperations so being assed out for the summer really isn't that big of an option. I hated summer. This is the first one I will enjoy in 4 years.

I assure you if they haven't called you for an appt it's because they mis understood you and didn't think you were serious about coming. If you called and said to her, "I'm ready to come." I bet you would have an appt by weeks end.

I really pray you are one of the lucky ones. Most of us can't control our MS flare-ups and never knew when they would happen or how severe. ( I knew if it was summer I was going to get worse) We needed to make sure we got rid of this crap before it has the chance to get us more. Perfect example is Mel and Jamie. She was tired all the time but had very few other issues. Her Edss was 1.5 but she just didn't feel like waiting for the MS to finally give her that blow that knocked her off her feet for good.

Now she is getting already doing better from the chemo and I would be willing to bet she is sooooo bored! lol Soon she will be home though, and life will be back to normal within three months. I'm willing to bet by the end of the 2nd month her fatigue will be a thing of the past.

I just hope waiting doesn't give your MS the chance to win.
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Postby 777 » Fri May 16, 2008 6:18 am

I called twice and talked to Carrie. Both times she told me som,eone would be calling me in 2 weeks.. well the first time I waited 3 weeks called he ragain, She said some wil be calling, they definatly want to see me i said ok. Now it's been another 2 weeks. Iam sure they will call, not sure who is supposed to call me though.

As for the summer heat, I am the opposite, I love it. I lay out in 110 degree dallas heat and humidity and I feel energized. I love my pool time and the sun.

BUT after having this last baby I feel the MS creeping up on me, my legs seem to be having some issue now, never had that before and just a feeling of not feeling real great. I had a bad relapse all during pregnancy which I am told is rare and odd, but hey what can I say. I know I cant live like that again. This is how I came to discover this treatment, i knew I had to do something so I could raise my kids. rasing them from a scooter which is I believe the way I am headed if I dont do something fairly soon and I hope it's not too late. Guess we'll see soon enough.

I think all the current treatments now including the tysabri are not enough, I dont see anything in the pipeline that looks promising either.

To me this seemed like the best option.
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Postby chrishasms » Fri May 16, 2008 6:29 am

The Average person by the time we die will live to be 85 or more. That is 1020 months.

This is 2 maybe 3 months of it. Then you can go back to....oh lets say the rest of the 1000 or so worrying about other stuff than MS.

Now you are thinking the right way. I would call Carrie back and say "Who should I call to make this appointment?"

PROACTIVE PROACTIVE PROACTIVE.....bug the shit out of them.
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Postby 777 » Fri May 16, 2008 6:41 am

I thought of that, but I realize they are busy with other people. it is frustrating waiting but on the other hand i know I am not the only person they are trying to work in. There may be people that are worse off that need treatment before me. I am patient, it's hard sometimes, but i understand if they cant get to me right away. I am sure they will before the summer ends.

I think recovery in the fall would be much better for me anyway. I would look so cool over halloween with my bald head.
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Postby Cyclops » Fri May 16, 2008 9:54 am

Chris wrote: "I was fine and then WHAMMO!"


That scares me a little. I was dx'd 6 months ago after optic neuritis but I had my first symptoms about 3 years ago. I'm still "fine". I'd jump at the chance to try Revimmune but I doubt I would qualify.

Am I right in saying that they will only take "severe refractory" cases?

I want to stop this disease before it does any real damage. I would try Revimmune tomorrow if they'd let me.

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Postby Jamie » Fri May 16, 2008 9:57 am

On the contrary, they were keen on Mel because of the obvious inflammation and brain activity but also very low disability.

if you have enhancing lesions they will talk with you.

contact Carrie, send your records.
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Postby Cyclops » Fri May 16, 2008 10:02 am

Could you post Carrie's contact details? I'm sure they've already been posted but I can't spot them. I've only one eye you know.

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Postby 777 » Fri May 16, 2008 10:06 am

I dont have any enhanced lesions and they want to talk to me.
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