Tumefactive MS

[Cuzzie]

I was diagnosed with tumefactive MS in March 2010. I have been dealing with it day by day and taking it one day at a time. Some good days, but mostly bad days. Are there any books or publications out there that I can read more about tumefactive MS? I am trying to get as much information as possible....you can find info on all the other four types of MS, but not tumefactive.

Any suggestions would be greatly appreciated.

[jazzgirl]

Hi Cuzzie, and welcome! There have been quite a few discussions on here about tumefactive MS. Just type those words into our Search feature running atop the Message Boards (it's 7th in line).

[Cuzzie]

Thank you for the info, I will look at it.

[Missydeb65]

Cuzzie,

I was just cruising this new site (MSworld.org) and did a "Jump forum" at the bottom of the pages and found a 'book/reading' area. You might go find that blog area and ask on there - seemed to be some knowledgable & avid readers there, not to mention that they all seemed to be MS related somewhat.
Good Luck!

[sprinkles]

Hi Cuzzie,

It's very difficult to find much on tumefactive M.S. (I've been searching since having a brain biobsy last November). There are a few studies on the internet, but most of them you have to pay like $30.00 apiece for.

My husband and I have done just that though. There are some articles out there too on specific cases. It CAN be potentially very aggresive.

HOWEVER, I finally got in to see the head of neurology at UCLA (major university) and just recently found a new neurologist who I actually like and took the time to do his own research on it as well as look at the recommendations from UCLA.

The bottom line from both of them - tumefactive MS patients "can potentially" end up doing very well. The general time between excacerbations can be longer (around 4.7 years), plus the amount of disabililty in the future on their disability scale can be less.

They both agree that we usually respond to iv steroids very well.

I really don't know. I wish you luck. Like my doctor told me yesterday - the boibsy can't be un-done or put back (I have permanent brain related issues from surgery alone).

I did horrible on Avonex for five months, I got so sick I was all but bed ridden and stopped all my meds (I had a jerk neuro at the time).

At this point I am only on neurontin for nerve pain and pain pils for my head. My new doctor thinks that the oral pill will be coming out soon and that it's OK for me to wait for it instead of starting copaxone right now - which I was all for! Leave me alone, I'm still healing from brain surgery.

Good luck, and please share if you get information. For me, the biggst hurdle was finding a GOOD doctor, at least one who was willing to admit that he didn't know much about it and was willing to do research.

Tammy

[Cuzzie]

Tammy, thanks so much for the information. I love my nuero, she is great. I am located in Mobile, AL. I did go to UAB (University of Alabama/Birmingham) which is a major medical school/hospital in this area. I saw the nuero "guru" there and he agreed with my local neuro. I did one round of Solumedrol and had a severe allergic reaction to it, wound up in the hospital because of it. Right now, I am on Rebif, anti-inflammatory med, maintenance migraine med, cymbalta, anti-anxiety med, and pain pills. I was diagnosed in 03/10. From all the info that I have been able to obtain about tumefactive MS is that it is very unpredictable because there hasn't been much research done on it. I guess I am like everyone else, just have to wake up each morning to figure out what kind of day it is going to me. If I find out anything else, I will definitely post it, please do the same. My doctor absolutely will NOT release me to go back to work. I have a high stress job and she will not agree to let me work, the main reason of her feeling this way is because it's tumefactive, so that leads me to believe that it's not going to be a good road ahead. I know that I am not mentally or physically able to do my job efficiently now anyway.

Cuzzie