Rare Malignant MS? Please I need some answers!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/15/2011 6:52 PM (GMT -6)   
Hi,
So my husband was just diagnosed with MS.  We are young (early thirties) and both healthy. My husband has been active and complaint free all of his life until the day he woke up with double vision 6 weeks ago.  Anyhow, his new MRI (repeated after about a month) shows six new active lesions.  It lists diagnosis of Marburg's Variant, or rare malignant MS.  Most info out there says "luckily this form of MS is very rare".  Does anyone know about this.  Is it as bad as the information out there states?  I am agonizing over this.  Please help.  Anything would be great. 
Thank You
Lika

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3177
   Posted 1/15/2011 8:47 PM (GMT -6)   
I am very sorry to hear that you are facing a scary diagnosis for your husband. I don't know anything more about Marburgs than what you could find by googling Marburgs.

I wish you and your husband the very best. Keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/15/2011 10:39 PM (GMT -6)   
Thanks,
I forgot to mention that we recieved the MRI report in the mail and as it is a holiday weekemd there are no Doctor's to ask.  There were many things on the MRI I would love to know.  Is it normal to have 6 new active lesions in a period of 5 weeks?  This all began just 6 weeks ago.  I guess there is not a lot of need to question the diagnosis but my husband has results that seem somewhat off the charts.  He has dozens of lesions and all the clinical findings with no medical history and very little involvement. I want to be educated so that I can advocate for him but so many of his findings have little to no researh, another being round lesions on his cervical spine at C2.  If anyone knows anything.......thanks.
biting my nails

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3177
   Posted 1/16/2011 11:11 AM (GMT -6)   
It is definitely not typical for MS to develop so many more lesions in such a short time.  You might want to contact Northwestern Medical (associated with Northwestern U.).  They are currently pulling for a stem cell research for MS.  Marburgs has repsonded to stem cell transplant. 
 
MS itself is poorly understood, Marburgs variant even more so.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3177
   Posted 1/16/2011 11:19 AM (GMT -6)   
I found this.  There is a phone number at the bottom.
 

lika
New Member


Date Joined Jan 2011
Total Posts : 9
   Posted 1/16/2011 11:26 AM (GMT -6)   
Wow,
Thanks Gretchen.  Just someone trying to think about this other than me is kso helpful.  As we both have pointed out, Marburgs is very hard and very scary to research.  I did read about stem cell and bone marrow proceedures, but the neuro wants Tysabri first.  That is the other clincher, I have never heard of anyone taking Tysabri as a first course of treatment.  PML is scary but the 70% stats you read seem to be holding up, so maybe it is a good choice.
Thank you
lika

MEDGIRL970
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/27/2011 11:41 PM (GMT -6)   
Dear Lika, I was reading your post on Marburg, I'm sorry to hear that about your husband, I haven't been on here in a while but what I've read in my Medical book is that Marburg is a Virus acquired from exposure to infected primate tissues. It says that it is highly infectious causing severe disease that affects many organs, The reservoir for the virus seems to reside only in Central Africa. I read about this in my Merck Manual of Medical Information. I would be sure to research it on the computer like Gretchen said, hope this helps you some!!  I'll be praying for you and your husband, I have some lesions on my spinal cord and a syrinx in my spinal cord between C6-C7. They have to keep a good watch on it because it can get bigger and burst and the Doctors told me that it could cause death if it gets to full of spinal fluid. I'm due for a MRI soon to get it checked. I have alot of tremors in my legs,arms,hands and even in my jaw, it makes my teeth chatter sometimes, it's very irratating but can't let anything get me down, just gotta be positive and do the best I can. Hope your husband does well with ever treatment they decide to give him, God Bless ya and take care.
 
Dianne

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3177
   Posted 1/28/2011 9:08 AM (GMT -6)   
To clarify, Lika meant Marburg's Variant of MS.  Not Marburg virus.  Its a strain of MS that tends to be very progressive and difficult to treat. 
 
You were very sweet to post and show support.  Lika's husband has had his first Tysabri infusion.  He is also in another flare affecting his eye and face again.  Hopefully the Tysabri will kick in and get things to settle down.
 
Does the doctor say what is causing the lesions on your spine?  Those sounds scary. 

onesandtwos
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/23/2011 6:39 PM (GMT -6)   
Dear Lika,

My wife was diagnosed with Marburg Variant Multiple Sclerosis (Malignant MS). She first got sick on Sept. 30, 2010 and went from completely normal to having an Expanded Disability Status Scale (EDSS) of 8.5 in lest than one week. She was given her Diagnosis of Marburg at the end of October and started treatments shortly after. We are still looking for answers ourselves. However i will let you know that she has since climbed back up that scale to a 5.5 and she has good days and bad. We also have a 15 month old daughter and our future is uncertain. The specialist her has ensured us that they have had some success with treatment in the past but we are taking this one day at a time. Please let me know as to any information you have and I would be glad to share what we have. This is extremely rare and not a lot out there but I have researched as much as I can and feel i may be of help.

ashton.strong@gmail.com

Cking
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/7/2012 10:53 PM (GMT -6)   
MS in the Compassionate Allowances Listings

In December 2011, the Social Security Administration added an advanced form of MS, “Malignant MS,” to its list of Compassionate Allowances conditions. The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s definition of disability. “Malignant MS” includes individuals who live with advanced MS, aggressive MS, Fulminant MS, or Marburg’s Variant MS. For more information and to determine if you would qualify for expedited review, read these Frequently Asked Questions and this helpful presentation.

Cking
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/7/2012 10:55 PM (GMT -6)   
http://www.nationalmssociety.org/government-affairs-and-advocacy/government-programs/social-security-disability/index.aspx

JennRealTalk6
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/10/2012 4:29 PM (GMT -6)   
I am curious if he has any symptoms at this time also are they wanting to treat if so with what

toney
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/9/2012 2:31 AM (GMT -6)   
There is a treatment that could possibly stop this malignant form of MS. I recently found out about stem cell treatments and the ability for it to stop the progression of MS. I have been researching this subject daily since learning about it. Wish I knew it sooner.
Carmel Turner story on www.msstemcell.com has an amazing story about her aggressive form of rrms and how she was able to halt her disease through HSCT ( hematopoietec stem cell treatment). She is MS free. Through this experience, she is in her words "Paying it Forward" by sharing with others her road to cure. She also has reliable hospitals that can perform these treatments on her web site.

shockedinohio
New Member


Date Joined Dec 2012
Total Posts : 1
   Posted 12/19/2012 12:19 PM (GMT -6)   
My husband can't have stem cell treatments or bone marrow treatments due to the fact that he had lypoma years ago. He is not able to do any trials for marburg ms. I'm so scarred of the outcome of his illness. Any imput would be appreciated.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, October 25, 2014 10:36 PM (GMT -6)
There are a total of 2,251,474 posts in 250,448 threads.
View Active Threads


Who's Online
This forum has 157584 registered members. Please welcome our newest member, Fluffy-Penguin24.
357 Guest(s), 15 Registered Member(s) are currently online.  Details
DBwithUC, MissGigi, notsosicklygirl, bekay, LymePickle, Keebler, healthy2014, TeacherAxel, Carolinpa, Todd1963, kiptyn, Lynnwood, platinumpixie, Fluffy-Penguin24, Garden Peace


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest  Follow HealingWell.com on YouTube
Advertisement
Advertisement

©1996-2014 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer