Rare Malignant MS? Please I need some answers!

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

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

I found this.  There is a phone number at the bottom.

http://www.nmh.org/nm/stem+cell+transplantation+program

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

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.

[email protected]

http://www.nationalmssociety.org/government-affairs-and-advocacy/government-programs/social-security-disability/index.aspx

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.