HI EVERYONE, NICE TO MEET YOU!

[Monicanivens123]

HI EVERYONE,
HERE'S THE STORY....I HAD 6 RELAPSES THIS YEAR, THAT REQUIRED IV STEROIDS, SINCE IVE STARTED THE REBIF BACK IN JULY I HAVENT HAD ANY NEW ONES THANK GOD! I WAS TOLD I HAVE RRMS, BUT THEY PUT A DIFFERENT WORDING ABOUT IT ...BEFORE THE FINAL DX, THEY SAID I HAVE TUMEFACTIVE MS...

SO IT LOOKS LIKE A BRAIN TUMOR, PLUS MORE AGGRESIVE.....THIS HAS REALLY BEAT ME DOWN AS FAR AS NOT BEING ABLE TO DRIVE ANYORE, VERTIGO, THE FATIGUE IS WHAT BOTHERS ME MOST OF ALL, I NEED TO BE WOKEN UP EVEN IF IVE SLEPT 12 HOURS!! NOT TO MENTION MY ENTIRE LEFT SIDE IS STILL NUMB, AND MY JAW HURTS ALL THE TIME FROM SHAKING FROM THE FLU I GET TO GIVE MYSELF EVERY OTHER DAY LOL (REBIF)

I ALSO SOUND LIKE IM DRUNK ALL THE TIME FROM THESLURRING, AND IT DRIVES ME CRAZY BC BEFORE ALL OF THIS I WAS A VERY ACTIVE PERSON...ALWAYS EMPLOYED FULL TIME, AND ALWAYS USING MY WEEKENDS TO RUN ERRANDS AND DO FUN KID STUFF FOR MY 6 YEAR OLD. IM JUST WONDERING HAS ANYONE HEARD OF TUMEFACTIVE MS AND WHAT IN THE LONG TERM CAN BE EXPECTED??

IM KINDA FREAKING OUT BC NO ONE SO FAR HAS REALLY EXPLAINED TO ME THE DIFFERENCE....HOW MANY RELAPSES PER YEAR SHOULD BE EXPECTED, WHEN AM I GOING TO NEED A WHEELCHAIR?? ETC...

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[HellsBells1]

Tumefactive MS

Hello there, and so sorry to hear about your dx. I had never heard of this type of MS, but as per my nickname "Google Queen" I always research everything new.

In my brief visit to the web, it seems that Tumefactive MS is a very rare form of MS that is indistinguishable from a brain tumour, so I would guess they can't tell if it is a tumour or a very large lesion, but that you certainly must have other lesions and/or signs of MS to lead them to this dx rather than a dx of a brain tumour.

It sounds pretty scary, and I would do some serious research yourself on-line with reputable sites or at the library to make yourself comfortable with your knowledge of this new dx. Contact an MS Society local branch and ask for very specific information about this type of MS so you know what you can expect.

Hang in there.

My brain lesions were non-typical MS type so my neurologist used the MRI to try and see if they were cancer. It's called Magnetic resonance spectroscopy (MRS), also known as nuclear magnetic resonance (NMR) spectroscopy.

It's quite possible this is how non cancerous lesions were determined in the thread starters diagnosis.

My results were inconclusive because either my lesions were too small for an accurate measurement, or they were non cancerous, and we decided to go forward with a lumbar puncture. Lets just say I hit a MS diagnostic home run on the LP.

[tortis]

Hi, welcome sorry about the reason you are here. I have baloconcentric M.S. which is considered TUMEFACTIVE MS and it is very rare so you may have to do a lot of your own research. Try to stay with the main colleges and hospitals for research also you can register with medscape as a student. I also was on heavy steroids about 3 times for about 6 months and then 2 or 3 times since then but the main lesion is now fading thank God. I have severe dizziness but not really vertigo but the only thing that helps the dizziness and fatigue is valium do not ask me why, but it allows me to drive safely but not if I get to tired. I have posted about this but very few people have this type of M.S. so I have not had many responses I sure would like to hear from other people with this and their experiances and symptons. If you have any questions just repost in the questions section and I will watch for your post. Get Well, Peace

Tortis