Tumefactive MS & MS Stroke-Like Attack

[MandyLynn003]

Hi everyone,
I’m speaking on behave for my sister who is in Rehab after having a MS Stroke-like attack January 4th 2014.

The Neurologist said she has Tumefactive MS because of the size of the lesions on her brain MRI.
They did a Brain biopsy to rule out Tumors.

She’s on Copaxone and a steroid taper right now.

Her whole right side of her body went numb, and she couldn’t talk, only mumble
She’s gotten feeling and movement back in her leg probably 75% and her arm is about 50%.
Her speech is getting better but she still has a hard time talking.

What I gather about Tumefactive MS is that it’s a rare form of MS diagnosed by the size of the lesion.


These are some questions she has:

1. Has anyone here been diagnosed with Tumefactive MS and is Copaxone a good DMD for this given the low success rate for RRMS? Or should she be on a higher success rate DMD?

2. Anyone who has had the stroke like attack, how long did it take for your speech to come back, and are you back to talking as before the attack?

3. I know you can’t put a time frame on this but she would like to know with all the given information above, what’s her chances of being able to walk by this June for her son’s first birthday.
Right now she can take baby steps with a cane, but she wants to walk without it.


And any other information or input would be greatly appreciated, Thank You.

[dyin_myelin]

I'm sorry you both got stuck with this *** disease, and especially that she had to endure a biopsy. One thing that I read about tumefactive is that the prognosis isn't any worse than "common" RRMS. Everyone's DMD choice is different, but most all MS cases are not benign. Even when there is no overt disease activity present, MS is slowly eroding myelin and causing brain atrophy. I think people should treat it as aggressively and holistically as their risk tolerance allows, but that is just my opinion. I too was told it was a tumor, so I empathize.

[tommylee]

[QUOTE=MandyLynn003;144559

1. Has anyone here been diagnosed with Tumefactive MS and is Copaxone a good DMD for this given the low success rate for RRMS?

Don't know if it is the best choice but it is what I am waiting for.

2. Anyone who has had the stroke like attack, how long did it take for your speech to come back, and are you back to talking as before the attack?


My words are slightly slurred. But not too bad. I can pass for normal most days.

3. I know you can’t put a time frame on this but she would like to know with all the given information above, what’s her chances of being able to walk by this June for her son’s first birthday.[/QUOTE]

Time will tell. There is no way to predict what will come back.

I had my Tumefactive episode in July.
I am still improving and don't know what is left.
Wait and see?

[Thinkimjob]

I have no idea whether she'll be able to walk in time for her child's first birthday or not. Main thing is she's alive.

I know it's the wrong thing to say, but I'm sorry this has happened.
Copaxone was once the drug of choice, so it's okay.

[MSwhileOverseas]

Hi MandyLynn, I was wondering how your sister was doing. I was not diagnosed with tumefactive MS but my first attack was first thought to be a stroke or cancer. I have been on rebif for a year and done well. It has about the same efficiency as Copaxone. My doctor told me not to get to hung up on the efficiency because if it works for me it works for me and the 30% includes all the people that it didn't work at all.

I have not had an attack since the first a year ago and my two MRIs since showed smaller lesions and no new ones. I will stick with rebif until it no longer seems to be working.

For your second question, I had a good friend tell me to expect it to take a year to see how much I would improve. She was right, my improvement was really slow in the beginning and it took months for my speech to improve. I am now 13 months since my attack and I am not the same but mostly only my husband, neuro and I notice it and I still feel like I am slowly improving.

[Katje]

I had a stroke like attack last April. it took me 3 months to recover fully.

[MandyLynn003]

Thank You

I know it’s a wait and see and only time will tell, I tried to explain that to her but it’s hard to compare optic neuritis to all that she’s been thru.
I figured I’d ask here since I knew there would be some people with similar stories.

She finds it comforting that she’s not the only one who’s gone thru this.

She said she would stick with copaxone until she gets better then she’ll try Tec. Or Avonex.
She has improved a lot since January, hopefully she will recover fully and fast.

Thank You all for your responses.

[purpleivy]

I just wanted to pop in and say thanks for posting this. I was unaware that others had this type of attack. My first attack was stroke like although I did not have loss of speech and not severe enough for hospitalization.
I had complete left side numbness including my face and the left side of my mouth still doesn't look quite right. My problems are still mainly in my left side. I have regained all function in the affected areas, only took a few months, but still have residual numbness over the entire area. Eight years later, I don't notice it all the time, it's just my new "normal".

[BigA]

If it is Tumefactive MS, I would definitely quiz her doctor on why he's starting her out on something:

1) Which takes longer than average to reach full efficacy
2) Is not considered the strongest, compared to new medications.

He/She may want to see how the MS goes before going heavier on the meds, but with Tumefactive, I think (but don't know that much about it) you have to start more aggressively because Tumefactive is by definition aggressive and more dangerous than standard MS.

Are you seeing a neurologist specializing in Multiple Sclerosis? Don't go to "just a" neurologist, they should be specialists. And get a second opinion.

See what her current doctor thinks. It may only be a procedural thing, where he goes thorough the normal first-line drugs before jumping to the more expensive new ones. It may be for insurance as well, but from my understanding, Tumefactive MS is not "wait and see".

[MandyLynn003]

I agree

Big A, I agree.
From what I researched Tumefactive MS is worse than regular MS and her lesion size is huge compared to regular MS.
I did find it odd that copaxone was the DMD choice by the Nero and I was concerned about the low success rate.
But after researching it, I really couldn’t find a type of drug therapy that’s best for Tumefactive MS.
That’s why I questioned it to see what others here had to say.
I think most people here are more knowledgeable than most doctors.

I hope she sees another nero for a second opinion, the one she has now is a MS specialist from Boston Mass., but another opinion is always a good idea.

[tortis]

Hello, I have had a Tumefactive episode but mine ended up being called baloconcentric which is in the same group of rare M.S. lesions. My lesion was 2.2 by 2.2 centimeters. They usually treat very aggressively right away with solumedrol, 1 gram for at least 5 days and then they repeat m.r.i. very soon after to make sure its not still enhancing. Of course I am not a Dr. but this is what they did for me and the research I did backed it up. I still suffer many things that have not gone away. The left side of my face has fallen, its not real noticeable though,many real bad headaches, urinary and bowel problems, most of the numbness is gone from original attack but I have no balance and need a cane all the time but this is from other lesions. I really do not know how many symptoms came from the original attack. I do know that we are all different and everything may completely resolve. Some of the other posts had real good advice and you should see a M.S. specialist if possible as BigA said. I really wish you the best of luck.
PEACE
Tortis