RRMS that causes fast progression but no more lesions????

[crissycarosella]

Can you tell me about the type of RRMS that causes one to decline and progress quickly without added more lesions?  MSF sent some infoo that lightly touches the subject but can not find any info on it anywhere else.  On six months of deterioration and the longest remission I have had has been a day or two, each flare up gets worse, no MRI changes?? Very perplexed as to why I am sooo sick. I heard it is rare, but has to be somewhere to get info on how to treat.

[Lulu54]

Hi crissycarolsella, I am so sorry you are having fits with this round of problems.  It must be horrible to live with a whole lot of shakin' going on!  (sorry Elvis!).  If I remember right, Sumana had success with taking acthar, and I will hope the same for you.

For now rather than wondering/worrying what type of MS you have, please put your energies toward feeling better.  The type is just a name and you will have the same problems regardless of what it is called.

best,
Lulu

[COBOB]

take up to 9 months for Copaxone to kick in and modify your immune system, so hang in there.

Bob

[crissycarosella]

Thank you all for answers and encouragement.  I just saw nuero today.  He is switcging me to copaxone and taking me off the god awful avonex.  He is also going to give me five day injections of Acthar since I had convulsions and allergy to solu-medrol.  Really hoping this helps whip me into shape.  He is going to try to find something to calm my tremors down as I am now a human earthquake!

[sllowe]

Excellent missing link/point DB! Something newly dx'd very much need to remember!

[doublevision1]

A RRMS relapse needs to be separated from the previous one by 30 days, so when you say there are sometimes only 1 or 2 days between relpases, these are considered to be all one relapse.

[kerrtelli]

I read somewhere that there is a type of ms called progressive remitting ms.
It said that you continue to progress and still have flare ups.
I don't have the reference article to give you so maybe someone more knowledgeable here could give you more info.

I think that is the type I have because I have progresses very quickly and have flare ups very close to each other.

But as a lot of people here say only time can tell.

Hope that helps.

Kerri

[COBOB]

MRI shows damage to the myelin in the white matter. There can be damage to the axons that the MRI will not show right away.  The MRI also can only show "macroscopic" changes in white matter.  There can be damage happening at the microscopic level or in the grey matter that the current MRI technology can not show.

Bob