Marsburg Variant

[ms_daughter]

Can anyone tell me about this or share some links? There is so little information, but my dad was told today this is most likely what he has.

[KatieAgain]

I am sorry your father possibly has the Marburg Variant.

It is a exceptionally very rare form of MS and I do not know anyone here that has it. Exceptionally rare.

The Neuros will be very aggressive in the treatment of your Father. So hold on darlin', you and your family might be in for a bumpy ride.

Good News, there are some drugs out there now that can help. I think you need to talk to your Dad or his Neuros and see what kind of treatment plan they are going to do.

I am hoping the best for your Father and family.

And this is a great place to vent, or cry, or ask for support. So, please come back and let us know how your Father and YOU are doing.

[SNOOPY]

Hello ms_daugher and welcome to MSWorld.

You are correct, there is very little information about Marburg's Disease as well as other MS variants.

MS variants, such as Marburg's disease, are typically more aggressive than "MS." These variants are rare and the reason it is difficult to find much information.

The best resource would be your Dad's Neurologist.

Take care and best wishes

[mjan]

Hugs to you and your father, ms_daugher~sad to learn of his illness. Cannot imagine what you all are going through. But good for you for advocating for him. How is HE doing with this news?

As hard as this is for your family, he may end up contributing in a way that helps doctors work even harder to find treatments. No one wants this stuff, even if it helps others, no one wants to go through this.

But know in the process, WE are here for you and your father.

WE will walk this journey along side you, if you want us to. I especially will add your father to my prayers and send him healing thoughts both psychologically and physically.

May you know many blessing~

Here's another HUG~!
Jan

[bree2013]

In my prayers...

Can anyone tell me about this or share some links? There is so little information, but my dad was told today this is most likely what he has.

msdaugher - Can't even imagine what your dad and family are going through right now. As others have stated, your dad's neuro is the best source of information right now.

All the best,
Bree

[ms_daughter]

Thank you all very much. It's been a hard week. I guess I'll tell my story in the introduce yourself forum.

[tommylee]

If you google tumeactive MS you will get a little information on Marsburg.
It is rare, especially in men.

That said I am a 49 year old man that has been Dx with MS for 15+ years.
Last summer a stroke like spell landed me in the hospital.
After a pile of tests it is looking like I have developed tumeactive MS.
From what I have read and experienced thus far... I don't recommend it.

Nice to see you support your dad. Hope you find the help you need.

[ms_daughter]

If you google tumeactive MS you will get a little information on Marsburg.
It is rare, especially in men.

That said I am a 49 year old man that has been Dx with MS for 15+ years.
Last summer a stroke like spell landed me in the hospital.
After a pile of tests it is looking like I have developed tumeactive MS.
From what I have read and experienced thus far... I don't recommend it.

Nice to see you support your dad. Hope you find the help you need.

Thank you for your help. So sorry for your diagnosis.

[KatieAgain]

If you google tumeactive MS you will get a little information on Marsburg.
It is rare, especially in men.

That said I am a 49 year old man that has been Dx with MS for 15+ years.
Last summer a stroke like spell landed me in the hospital.
After a pile of tests it is looking like I have developed tumeactive MS.
From what I have read and experienced thus far... I don't recommend it.

Nice to see you support your dad. Hope you find the help you need.

Tommylee

I am so sorry to hear this. I normally don't give out too many internet hugs but, (((((((((BIG HUGS))))))))!!!

[Seasha]

Hi ms_daughters - I am also sorry to hear this news about your father and am sending my prayers for him. It's wonderful for him to have such a loving daughter advocating for him. Do you have other family members nearby?

I just caught your signature and noticed your mention of spelling your name wrong, so I went ahead and changed that for you. Now you can go and delete your signature !

Sending you lots of hugs!
And to you also Tommylee!

We are all here for you