Tumefactive MS

[Cuzzie]

I was diagnosed with tumefactive MS in March 2010. Since this type of MS is so new and rare I have been unable to find any books or reading information on it. All my doctors that I have talked to haven't been able to give me any good reading suggestions either, again because it's so new.

Does anyone have some info they would be willing to sharew with me or tell me where they found it? I know someone a few weeks back mentioned that a doctor at the Mayo Clinic (I think) had written something about this type of MS. I looked it up and it eas like reading Latin to me. But if I could find it again I would like to give it to my neuro and let her interpret it for me.

Thanks in advance to anyone that can help me.

Cuzzie

[DancesWithPugs]

You had my curiosity up, so I went on a lengthy search in hopes of finding something for you. Yeah, it's definitely newish and rare, or at least I bet it's just newly discovered. One extremely scientifically mind-numbing article I read seemed to indicate that the newer MRI machines are picking up more of the ring-like characteristics of a Tumefactive lesion compared to older ones. Don't hold me to that, though, because, like I said, it was mind-numbing.

I don't know if you've tried this already, but I went to Google's main website, set the search options to look in blogs only, and I came up with a lot of hits. People like you looking for the same info, and some helpful responses and links. Anyway, it's worth a shot.

I really hope you find what you're looking for. While rare now, it could be that more and more will end up classified tumefactive as advances in research are made. Who knows?

[onlyairfare]

I am never sure about the policy here regarding links, but I think this is the article you are looking for, and the link is from the public, government funded National Library of Medicine (PubMed) which we pay for in our taxes, so I don't think it is illegal to post it. You can print out the abstract (summary) and take it to your neurologist for her to review. The medical library at her hospital can probably get the full article for her if she wishes.

[url[http://www.ncbi.nlm.nih.gov/pubmed/18535080[url]

The second author is Dr. Gavrilova, a neurologist specializing in MS at Mayo Clinic in Minnesota. There are 8 or 9 such MS neurologists at Mayo. If you go to the Department of Neurology at Mayo Clinic website, there is a list of all the physicians as well as their bio and list of publications.

Looking through this article and the PubMed links, most of the literature is on MRI analysis of tumefactive MS, and not that much is on how it relates to clinical treatment of MS patients. In other words, what does it mean for us? I don't think much is known. The take home point seems to be: consider the diagnosis of tumefactive MS and don't automatically assume brain tumor and necessary brain biopsy.

Another thing I noticed is, this is not all that new. Here is an article from the journal "Neuroradiology" from 1996, fourteen years ago!

[url]http://www.ncbi.nlm.nih.gov/pubmed/8880719[url]

This 1996 article includes 21 patients, while the second one covers 161 patients - less than 200 cases of tumefactive MS discussed in the medical literature (at least as far as it was "easy" for me to find, I probably missed a lot) over the past 14 years. So far, it is not a common occurrence, though there are quite a few of us discussing tumefactive MS here.

[Scooterbelle]

I can't supply any additional info but I wanted to add a thought. I was dx'd with Tumefactive MS a year ago. I only ever located articles that concentrated on MRI analysis and how it presented in various cases. It started me thinking that maybe the concentation in that direction is becase the medical profession seeks primarily just to identify the variant (as opposed to say, a brain tumour).

Once identified, if most cases of Tumefactive MS have followed a regular MS course (if any one of us can be considered regular!!!) then there is little reason for specific follow up studies. IE we are "rare" but not "different".

If Tumefactive MS behaved substantially differently to "regular" (or there were more of us!) maybe more information would be available.

Just a thought.

I wish you good luck in the search though Cuzzie - maybe something will turn up.

Best wishes

Di

[Cuzzie]

Tumefactive MS

Thanks to all for your information, if I find out anymore I will post it.

Cuzzie

[sprinkles]

Good Luck with looking for informatio. I agreaa with alot of above. My personal opinion about alot of the studies I've read talking about the imaging, is in fact trying to get doctors to NOT do what they did to me.

Although looking back, there is no question that I had "regualr" MS for many many years and never "knew it" (chalked all my problems up to my demanding job and other injuries).

But last November I ended up having emergency brain surgery (one single large mass/lession whatever you want to call it).

My case was very drastic, told me I had brain cancer high grade glioma and would die withing 6 mos two two years (surgeon secretly told my husband one year). I lived with that for one month before finding out that I did NOT IN FACT have brain cancer. Sorry, that was life changing

I am all for more information GETTING out there, if for no reason to "save" others from what happened to me. I understand that apparently many people have brain surgery and recover without any problems.

Unfortunately in my case, and it may have alot to do with the location left side that controls speech and executive skills. I still have MAJOR problems left over from surgery, that may or may not go away at this point.

10 months later, I still can't sleep on that side of my head. I am never without surgery specifiic site head pain (not to mention constant internal headaches), I have speech, memory and concentration problems that I did not have before surgery. I have gone from walking into that hospital 10 months ago, to a cane for the past 4 months to today, getting a walker with a seat - desperately holding on to my independance. First thing I'm going to do with it is go to the mall - where I haven't been in months.

Yes, I can type and think very clearly sitting here in the queit of my home, but out in the world - I get confused and can't speak well (doctors call it sensory overload).

I am still so sensitive to sound and crowds since surgery, that I have to wear earplugs in public or listen to peaceful music on an IPOD and although I do very well at home, have what are considered "social issues" (crowds and loud noises can cause a melt-down in public). But of course, "I look to good to be sick", it's gotten so bad that my husband has prepared a note for me to hand to cashiers asking them not to rush me or yell at me.

Sorry, if this post is more then you want to hear, I guess I've been staying away from here for the past week. Although, I love this website and was on it every day until my feelings were hurt after I sat here and cried in worry over another lady who said that even after her doctors have been "thinking" that she had MS, after an MRI, they decided it's "just a tumor" and she was going to have it removed this week.

My doctors also thought at first it could just be something bening, - uh huh. I still can't get that lady off my mind. I pray for her every day that she is fine, no MS, no cancer, no mistaken diagnosis like mine. But will we ever hear her outcome?

But a few people here have made me feel bad like I am looking for something "special" with my tumefactive mess. Maybe their surgeries were less invasive (I had 13 staples going down my head, and I still basically have a large "hole" that HURTS and can't be touched). Or that I was trying to "scare" that poor woman, and all I wanted to do was to at least let her know my story. Because it DID happen to me and it has happened to others.

I want to add something else. Even after everything I've been through, I am still very positive. I look at each day as a blessing. But, I am currently falling between two worlds. I go to an MS support group that helps with alot of the MS "stuff", but I am currently on a very aggressive downfall right now.

I also go to a tumor support group, because guess what, there are people who don't have MS, but have "similar" solical issues after having brain surgery themselves.

So, yes, I'm a little different. I thank the Lord for anyone I hear that does not have to have surgery.

P.S., I have finally recently been seen by the head of Neorlogy at UCLA meciatl center. The top doctor there has basically told me that this will go one of two ways. Either I will continue on this ridiculousely fast aggressive course.

Or she said "tumefactive MS' patients "can" end up doing very well. Possibly longer times between excacerbation (something like 4.7 years) plus there is potential for less disability in the future. So yes, I have hope and am not dwelling in a pit of self-pity.

To the moderators, I am sorry if this is an angry post. But I have been "angry" for a week now at some comments made about a post where I was just trying to maybe help someone else. Isn't that what this board is all about?

We're supposed to be helping each other here. I find the rare post on tumefactive MS. Most of the ones are the "lucky" ones who already knew they had MS and did not have to go through what I did. But I also have found others like me on the internet, who have gone through the same thing (dying brain cancer - etc). But those people don't seem to be on here. Where are they? Are they dealing with lives as tough as mine are?

Other people can come on here and complain about their problems and look for "support", but I'm having a tough time finding anyone who can help me. So, yes, I will always be on the look-out for anyone else like "me" on here.

God Bless each and every one of you that are doing "well" with your tumefactive MS or any other form of MS. Please share ANY information. Let us know when you are doing well - or when you are not. Let us know ANY information you may get, because there is just too little out there.

Once again, I apologize for the rant. It's 4:00am and I've been up all night in pain. Not to mention that I have been on Decadron (high grade oral steroid) for two weeks now. I know many of you can understand how that feels.

God Bless,
Tammy
42 Years Old

[onlyairfare]

Scooterbelle, I think you are right. Both of those studies I cited noted only modest differences in MS patients with tumefactive MS lesions compared to "regular MS" patients. The main point they make is that not every MS patient who has "something that looks like a brain tumor" needs a brain biopsy or a craniotomy to remove the "tumor."

If doctors are aware of the fact that tumefactive MS exists, then we can avoid a lot of unnecessary brain surgery. Since I have had a craniotomy to remove an actual brain tumor (and no craniotomy or biopsy done on my tumefactive MS lesion), I can tell you for sure, it is better not to have brain surgery if you don't have to!

[Shabesh]

My first lesion was like this back in 2004. Large and my neuro at that time said he could not rule out a tumor. Instead of putting me through a biopsy he waited a couple of months and repeated the MRI and the lesion was all but gone. I have since had one to two relapses but nothing like the first one. My neuro told me he had never seen somebody get hit so hard so fast and with that big of a lesion before. I just recently found out what kind of lesion it was. Go figure.