3 month post hicy (round 2) update

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

3 month post hicy (round 2) update

Postby RedPenguins » Tue Aug 04, 2009 12:16 am

Hi again everyone,

Well, it is with sadness that I report that things have been on a downslide for the last two weeks. My previous update, I was on top of the world and living without much limitations or restrictions. In the last week or so, I have become symptomatic to a somewhat severe degree.

Tomorrow I will go for my 3 month MRI follow-up and maybe we'll know more - maybe there will be active lesions, I don't know. I don't know that it matters what the MRI says, as the bottom line is - i am symptomatic again. This is very disappointing and frightening. I cant bear the thought that I might be slipping again.

I'm waiting to hear from Dr. Kerr at JH to discuss options for me - as sitting still and doing nothing is not an option for me. i will not sit still and just wait....my ms has been fairly aggressive from onset - and that's just too risky for me.

Im trying to learn more about the CCVSI stuff....I'm still confused on it - but that isnt going to stop me from getting in touch with the docs over at stanford. besides, ive met my medical costs for the year, so i have NO copayments anymore for any testing etc, so it wouldnt cost me anything except to get up to Northern Cali - and being that I'm in Southern Cali, that isnt much more than a 45 minute flight! So......if I can figure out what to do and who to contact - I will get the ball rolling.

movement. i need to keep moving. i will not go backwards. i will not get worse. i will fight.

thanks for listening to my somewhat pity party :(

~Keri
User avatar
RedPenguins
Family Elder
 
Posts: 153
Joined: Sat Apr 26, 2008 3:00 pm
Location: Los Angeles, CA

Advertisement

Postby mommasan » Tue Aug 04, 2009 6:28 am

Hi Keri,
It saddens me to hear you are doing so poorly. Unfortunatly, I feel that I am in the same boat as you. For the past 6 months my functioning has been declining. I have been getting weaker (slightly) and much much more spastic. I can't bend my right leg when I am laying flat on my back. No change on my MRI's as of late June. Just moving around the house has been incredibly difficult and my right hand and arm have been very uncoordinated.

I have started water therapy and will continue to work hard at that and, unfortunately, Revimmune put me into early menopause, so we are working on a good regimin of bioidentical hormones and perhaps those will help.

I really hope you get to Dr. Dake to take care of the CCVI. Unfortunately that is not an option for me right now. I am still better than I was before the Revimmune, but I guess I was hoping for so much more.

Sandy
User avatar
mommasan
Family Elder
 
Posts: 122
Joined: Sat Mar 15, 2008 4:00 pm

Postby Lyon » Tue Aug 04, 2009 12:57 pm

.
Last edited by Lyon on Sat Nov 26, 2011 11:01 am, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby phuong » Tue Nov 24, 2009 7:20 am

Hi RedPenguins,

I want to contact Dr.Drake at Stanford for CCSVI, can you please post some contact information for this doctor and i am anxious to hear what he said about yiu.
User avatar
phuong
Newbie
 
Posts: 1
Joined: Sun Nov 22, 2009 4:00 pm

Postby RedPenguins » Wed Feb 10, 2010 12:00 am

I haven't been around to update....

But my downslide was VERY brief...and could have just been caused by stress, working too much, and possibly getting sick.

Regardless, my MRIs have been clean - meaning no active lesions and no new lesions.

I consider the HiCy a success and am thankful to have done it.

I am NOT looking into other treatments at this point in time - no need to. I don't know much about CCSVI - but I don't know that that is the answer.

I continue to recommend HiCy to anyone who will listen. Insurance covers the procedure... and it is worth it!

~Keri
User avatar
RedPenguins
Family Elder
 
Posts: 153
Joined: Sat Apr 26, 2008 3:00 pm
Location: Los Angeles, CA

Postby rssugg » Wed Feb 10, 2010 12:23 pm

that is great to hear! I dont know why so many people are chasing the CCSVI stuff, but this may be the opportunity to get in on the HiCy action - while everyone is focused on something else!

Are the contacts still the same? Carrie Trecker i believe was teh person to call?

Also, i have spoke to folks here that have done it at Duke University. Are they still doing this there?
User avatar
rssugg
Family Elder
 
Posts: 104
Joined: Mon Jul 06, 2009 3:00 pm

Postby RedPenguins » Wed Feb 10, 2010 3:10 pm

Carrie Trekker is no longer at Hopkins, neither is Dr. Kerr.

I would try Dr. Edward Hammond ehammon5@jhmi.edu


Good luck,

~Keri
User avatar
RedPenguins
Family Elder
 
Posts: 153
Joined: Sat Apr 26, 2008 3:00 pm
Location: Los Angeles, CA

Postby Lyon » Wed Feb 10, 2010 4:00 pm

.
Last edited by Lyon on Mon Nov 21, 2011 6:27 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby AJWANTSACURE » Fri Feb 26, 2010 5:11 am

Duke University Hospital gives HiCy? As in duke University Hosp in Durham, NC? That is 20 min from me....guess i should get on the phone and find out who I have to speak to
<strong>STAY IN THE FIGHT TO FIND A CURE FOR MS</strong>
User avatar
AJWANTSACURE
Family Member
 
Posts: 41
Joined: Sun Jan 10, 2010 4:00 pm
Location: Raleigh, NC


Return to Revimmune (cyclophosphamide or cytoxan)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users