JH has my records!

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

JH has my records!

Postby RedPenguins » Sat May 03, 2008 12:20 am

Hi everyone,

I'd like to thank those of you who have shared their experience of the HiCy treatment.

Carrie at JH received my records on Friday. I'm very "excited" - okay, it feels weird to think that I "want" to have chemotherapy and that I'm excited about doing this.

Some people in my life, including my neuro, thinks this is a drastic move. Of course, my neuro makes no sense - in one breath he tells me that I'm rapidly declining...and in the next, he rolls his eyes when I tell him I want to do the HiCy treatment and that it's too drastic. Good thing it's my body, my disease, my choice, right?

I've only been diagnosed since January 4, 2008. Yup, just about 4 months...and the dx came out of nowhere - I hadn't been sick nor did I have any symptoms of anything until late December. :(

Anyhow, I hope to hear from JH by the end of this coming week. My goal would be to have the treatment in early August (or late July). Not sure if that is a pipe dream...but that is what I'd like. Then again, this cranky MS has never cared about what I want! :)

~Keri


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Postby sandonpoint » Sat May 03, 2008 4:48 am

Hi !

Just a question , dont be offended

If you were / are asymtomatic , do you have gad enhancing lesions on MRI ?

I guess what i'm asking are you CERTAIN of the Diagnosis ?

Regards

Sandon
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Postby Jamie » Sat May 03, 2008 6:03 am

Sandon,

She says she was asymptomtic until December.

Not now.

Jamie
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Postby 777 » Sat May 03, 2008 8:38 am

I would have to agree with your neuro, but it's your body. Seems a little soon to make such a decison such as this. I think 4 months is too soon for a neuro to decide if you are rapidly declining, if that in fact is the case wouldnt that make you PPMS?

I have had MS for 15 years, I have no symptoms at all and I am even starting to wonder if I want this treatment. Chemo is drastic and not thrilled about early menopause from the chemo, that alone comes with it's own set of issues.

I am still waiting for them to set up my first appt in baltimore. I will decide then after talking them.
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Postby Lyon » Sat May 03, 2008 9:24 am

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Postby 777 » Sat May 03, 2008 9:30 am

That's true. Just from the posts I read in the forums, many have stated they went from walking to a wheelchair within months. I don't know anyone in real life with PPMS, just going by what I have read.

This disease is so complicated, as long as I had it I don't even fully understand it. Just grateful mine has been inactive for years now
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Postby Lyon » Sat May 03, 2008 10:14 am

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Postby 777 » Sat May 03, 2008 10:24 am

I think MS is unpredicatable, who is to say my MS will remain this way. From what I have read from others who have had inactive MS for 15 - 20 years then all the sudden they end up in a wheelchair. I certainly dont want that and from my last attack I do feel some subtle residual effects from it.

I want to prevent MS ever attacking me or leaving me disabled or worse yet progressing into SPMS which there is no help at all once I slip over. I think that is my main reason for doing this is so I dont go SPMS, Ihave 2 little girls under the age of 2. I have to be around and active for them.
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Postby rainer » Sat May 03, 2008 10:25 am

777 wrote: Chemo is drastic


This is very true. The procedure comes with heavy risks and long term serious side-effects. I'm hugely glad it exists and people are benefiting from it but it is a serious decision. Good luck either way but don't rush into anything.
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Postby 777 » Sat May 03, 2008 10:34 am

rainer wrote:
777 wrote: Chemo is drastic


This is very true. The procedure comes with heavy risks and long term serious side-effects. I'm hugely glad it exists and people are benefiting from it but it is a serious decision. Good luck either way but don't rush into anything.


I said the same exact thing 2 weeks ago and got jumped on and lead to believe THIS chemo is not as bad.

It is a serious decision. part of me thinks.. hey I am not doing bad with my MS, it seems to be under control after all these years, this could make it worse in the long run and put me into early menopause leaving me miserable and regretting my decision. on the other hand I think what if I dont go through with this and then I end up disabled or SPMS. Again I might regret the fact i didnt do this.

it's so hard to know what to do. but I dont see any progress in treatments now being offered besides tysabri and one other I cant think of the name. The side effects and risks of those dont seem like a better option.
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Postby Lyon » Sat May 03, 2008 10:42 am

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Postby Lyon » Sat May 03, 2008 10:53 am

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Whoa boy! ;)

Postby RedPenguins » Sat May 03, 2008 12:07 pm

Wow, I go to sleep for a few hours and come back to this! LOL

I have seen 2 specialists - and both concur that I have MS and it looks gnarly. I am "labeled" as RRMS - as in order to get any other dx time has to pass, or that is my laymen's understanding of it. And I won't let anyone label me as anything other than RRMS - because then my treatment options decline significantly - and as long as I'm still breathing - I'm fighting with anything I can.

Yes, many Gd enhancing lesions in my brain, as well as some black spots. Oh, I also had "dawson's fingers" which are a hallmark in MS. I saw the actual pictures of my first MRI - and I still have nightmares about it. Went for my second MRI on Thursday - we shall see what it says.

Chemo is drastic. Tysabri is also considered drastic. Sorry, but holes in my brain are drastic, too!

As for it being too soon - I think Jamie (Melissa's fiance) said best -
" her EDSS is ‘only 1.5’, my argument is it was zero 6 months ago. Should we be happy it’s ‘only’ a 3.0 by the summer, then ‘lucky’ it’s ‘only’ a 5.0 by Christmas? "

Well, I was at a ZERO four months ago and now my doc puts me at atleast a 3! This is NOT okay. I will not stand by and let myself decline without putting up a fight. Again, my body, my disease, my choice.

Oh, I think also - we get "gung ho" about these types of treatments b/c they offer us hope for a change. And - while 85% (so they say) of people with MS have RRMS - and can go for years without much disability - well, sadly, some of us fall into the other category of RRMS which does decline. I think people forget that b/c we keep hearing stories of people who went 15 years without any significant problems. I wish that was my case...but it doesn't seem to be.

Hey, I'm not afraid of the adversity here. I received it from people when I fought to get onto Tysabri.

:)

Looking forward to more discussion!

~Keri
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Postby 777 » Sat May 03, 2008 12:16 pm

well good luck, I am sure they will accept you. they seem to be taking anyone who applies. I have only seen 1 person declined and he had PPMS.

They said I qualified and I had no activity for 14 years and no enhanced lesions. I am supposed to get treatment this summer.

Keri I dont know how old you are and maybe I am just vain. But I dont want to be thrown into menopause, oddly that scares me more than the MS.
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Hmmm....

Postby RedPenguins » Sat May 03, 2008 12:49 pm

777,
I'm not under the impression that they take anyone. I was told you had to have inflammation to be accepted.

As for early menopause - yes, I'm 32...and it is a concern for me. However, under the age of 35, the risk is less than 5%....BUT because I so desperately want children - that may be the one piece of the pie that prohibits me from doing this....though, I am in discussion about freezing some eggs. I read somewhere that the early-menopause can reverse itself - though I'm still waiting for Carrie to confirm or dismiss this notion (I emailed her the other day about that).

As for being accepted into the tx, if I read correctly, you still have not met with them. When was your last MRI? Again, I was told you had to have active inflammation to have this treatment... I had a MRI on Thursday...it was read yesterday, though they won't send me the results - so I have to wait till Monday. JH should have received them via fax on Friday - and I will check to see. I know they want a recent MRI - within 3 months - and so if I didn't get this one - I'd have to do one there or go back twice to meet with them. I was having a second MRI anyhow for my follow-up and as my baseline for the Tysabri...so the timing was good for me.

And just like Tysabri - this treatment option isn't for everyone. If it turns out to be a "cure" - or as good as it is gonna get for the next 20 yrs - well, then I'd never forgive myself for not trying! But that's me. Again, everyone needs to remember - including the doctors - it's my body, it's my disease, it's my choice.

Or maybe it should be:

It's my body + It's my disease = It's MY choice.

:)

~Keri



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