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Acute, Fulminate MS??

by Linda

My sister who is 48 was recently diagnosed
with acute, fulminate ms. It came on her quick and is not pretty. She has had 2 steroid treatments and has also undergone plasma exchange.

I would like more information of this type of MS and/or to be put in contact with someone that is real familiar with this. She was first hospitalized in April and is now living in skilled nursing.

I welcome any info.

Thanks,

L. Beck

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Jul 25, 2011
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starstarstarstarstar 		Marburg Multiple Sclerosis
by: Akrista

Acute or Fulminant MS, is also called Marburg's Variant MS or Marburg Multiple Sclerosis. It is also referred to as fulminating multiple sclerosis and malignant multiple sclerosis.

Malignant MS is sometimes used to describe patients who experience a high level of disability within 5 years of being diagnosed with MS.

This form of MS is in a category with several other diseases called MS variants by some and entirely different diseases by others. Otto Marburg discovered this particular type of MS.

There may be one single large lesion that may be mistaken for a tumor or abscess in the brain. If this is the case, a craniotomy and biopsy may be done to rule out other causes.

As you stated in your question about your sister, it comes on quick. Usually it starts with a fever. In the past the patient would almost always die from this type of MS.

Now, however, medications like Mitoxantrone, Alemtuzumab, and Rituximab, have been shown to help patients recover. Another treatment, autologous stem cell transplantation has also helped.

So, the future is not bleak for your sister. If you can find a doctor who will at least explore the possible treatment options, she may be able to recover to a certain degree. Read the information here and show it to her doctors if they don't already know about it. Please let us know what happens.

We wish you and your sister all the best,

Akrista

Scientific Articles with info on treatments (Clicking on them will open a new window).

This scientific abstract in 2006 shows how a neurosurgical craniotomy and an intravenous (IV) of Alemtuzumab was very helpful in alleviating this form of MS.

And this one in 2007, shows improvement after being given Rituximab.

This article shows how Autologous stem-cell transplantation helped in this malignant form of MS.
Nov 04, 2011
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starstarstarstarstar 		Reply to L. Beck
by: Anonymous

My sister in law was recently diagnosed with this form of MS back in mid August 2011. She was hospitalized for a month or so & we had first thought that she had a stroke because of her face.

They put her on a high dose of steroids (prednisone) & slowly weaned her off. They eventually sent her home while she was still on the steroids. 2 days after finishing the steroids she ended up back in the hospital where she has been for almost 2 months.

She was in ICU for about a month and was in a vegetative state for quite some time. They did multiple plasma exchanges. Her parents went & begged the pharmaceutical company to sponsor her for the drug Tysabri which is $50,000 monthly.

They excepted her case & within minutes of her first treatment we were getting some type of response from her. She was just released from the hospital 2 days ago & is doing better but, will still need someone to help care for her at home. I hope this helps.
Feb 12, 2012
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starstarstarstarstar 		My Son
by: kim coonis

My son has been struggling with Marburg Variant Disease since June of 09, it robbed him of his sight, all ability to do anything for himself. He didn't even know who we were and didn't speak a word for over two months.

He is now recovering very slowly. We just started a Facebook page trying to get more people with Marburg to communicate. His name is Zac Gilstrap and we started a Marburg Variant Disease page. I also attached his story in the information section.

Good Luck.

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