Hello - Here's my bizarre world of tumefactive MS

[sprinkles]

Hi All,

Here's my "story", on Friday the 13th in November I walked into my GP after a week of not being able to read cognitively (I could see, but my brain wasn't figuring anything out - things didn't make sense), I was also starting to have minor problems with speech and was bumping into things. All in one day, I went to a neurologist and had an MRI, at 6:00pm that night the radiologist was handing me a phone saying your doctor wants to talk to you. I was told that I had a "large mass on my brain - left side) and was going straight into the hospital.

Two days later, I had emergency brain surgery and the surgeon came out and told my family that i had inoperable/incurable brain cancer, that I had 6 mos to two years max to live (surgeon later said that needle biopsy in surgery tested positive malignant and that everything inside looked like cancer). After living with this for a month the pathology came back NON-CANCER (both UCLA and USC have said it is tumefactive MS).

At first my neurologist said, oh you just have MS, here - start Avonex (in January), realizing that I did not have a good doctor, it took me months to get into a MS specialist. He turns out to not be very good either, but I am currently on IV solumedrol every three weeks and prednisone (plus Avonex). He says my brain lesion is very "angry" and can be dangerous, if it doesn't calm down, he is talking about me starting a form of Chemo or IVIG or Blood Plasmaphoresis next month.

Looking back, I now realize that I have probably had MS for at least the past 5 or 6 years (I mainly ignored signs, because I have a torn disc in my back, so I just associated everything with sciatica and stuff).

This has been a nightmare, just recovering from "brain surgery", I still have problems 6 months later (massive headaches and head pain, can't handle crowds and loud noises). Not to mention that all of my MS symptoms have degenerated and I am really starting to have problems with numbness, lead like legs and arms.

I know there are other people out there, but where are they? I find a rare old post on a forum like this, but have no way to email anyone. I go to my local MS group and they are nice, but everyone is like - TUMEFACTIVE WHAT?? I just decided to step it up and will be going to the top neurologist at UCLA but I can't get in there until the end of August. In the meantime, now what, do I start chemo or whatever. Anyone out there ever do chemo for MS, I've heard it's used for aggressive cases, but I really want to hear from someone who has done it (even if you're not "tumefactive").

Thanks All,
Tammy, 41yr old white female

[KoKo]

Hello Tammy

Welcome to the MS World Forums - it's nice to meet you.

Thanks for sharing about your experience with Tumefactive MS. You've certainly been through alot. I know that there have been a few persons with Tumefactive MS here on the boards - that's how I first learned about it.

Sorry you have to wait until August for your appointment, but you will be seeing the top neuro at UCLA, so maybe it'll be worth the wait.

Hopefully you'll get some feedback from those persons on chemotherapy. If you don't get alot of responses about chemo here, you may want to post a similar thread in the Medications forum.

Wishing you the best

Take care,
KoKo

[sprinkles]

Thanks Koko for the welcome. This has just been turning into a nightmare the way I've been really degenerating over the past couple of months.

I have a favor/question to ask. As a moderator, do you have any way of forwarding this post to Nsubola?

He recently posted last month about his own tumefactive MS stuff and was going to go to the MAYO clinic. This is just so RARE and it's been impossible to contact ANYBODY else who has it.

If you could at all forward this and please give him my email I would be so very greatful. I really need to hear what has happened to him at the MAYO clinic (someplace I've thought about going to as well).

Thanks, and I am going to check out the medications section, besides chemo, I want to hear about IV solumedrol which is making me very sick right now.

Thanks,
Tammy

[KoKo]

Hello Tammy

Hope you're well today!

Nsubola does not have his e-mail listed in his public profile. I'll check with the administrator to see if sending him your e-mail is ok with our policies.

Let's hope he comes back here to look at his thread.

Take care,
KoKo

[nsubola]

Hi Tammy,

Hope you are doing well. I'm really sorry about the brain surgery and the big ordeal to get a diagnosis of Tumefactive MS. You are right to get into a specialists office. I feel really lucky that I have a doctor at the Mayo, she specializes in MS and wrote a study on Tumefactive MS.

I don't know how to give you my email or how to update my profile to have my email listed. It's ok if the moderators send you my info.

All the best

[sprinkles]

Thanks KoKo,

I did check out the medications board and was happy that I did, besides reading about chemo stuff.

I was able to read alot about IV Solu Medrol (I had been in a major crash after getting my IV on Tuesday).

I am glad that I found this board, I am actually reading alot of things that are helpful.

Thanks

[sprinkles]

Hi Nsubola,

I don't know how to do it either, I did send a message to the moderators asking them to give you my email address.

How are you doing? Can you tell me here who your doctor at the MAYO clinic is? I would love to look up their report.

What type of treatment are you on? I have definately decided against starting any type of chemo or IVIG, until I can get into UCLA.

You had a brain biobsy as well didn't you? How are you recovering from that? I am to the point that I don't know what problems are caused by the surgery or what problems are caused by my "lesion" (also known in my family as the gumbah) or just caused by plain old MS.

You mentioned that you were going back to work - how is that going? I hope all is going well for you - Thanks for responding, I can't believe that I didn't see your message - but hey isn't that typical.

Tammy

[sprinkles]

On second thought - Nsubola, I am so desperate to communicate with someone else who's "tumefactive", I'll just list my email address here - I really don't care.


**email address removed by Moderator in compliance with MSWorld guidelines. this may be put in your profile for all registered, logged-in members to see**

When you get a chance please email me.

Tammy

[KoKo]

Hello Tammy

Hope you're well today. I see Nsubola came back to see your post

You can put your e-mail in your profile. Here's how:

Email addresses must be manually added to user profiles for them to be visible. Here's how to do it:

*Click on UserCP (1st item on the left in the dark blue Navbar under the MSWorld logo)

*Choose Edit Your Details

*Scroll down to Additional Information. Type your email address in the URL field

*Scroll to page bottom and click Save Changes

*Your profile is only visible to registered logged-in members. Adding your email to your profile is done purely by choice. You can remove it at any time.

Hope this helps.

Take care,
KoKo

[sprinkles]

Thanks Koko,

I did it. Nsubola, if you read this, you can find my email in my profile now.

Thanks Sparky, I'll check it out.

Tammy

[hotnsandy]

Hi Tammy

Moving over from the other thread... Sorry to hear you're having such a tough time. I've been much luckier than you, I think. I don't know if I have tumefactive MS as such - no-one has used the term - but I did have two large lesions (3cms) on my initial MRI which the radiologist/neuro/neurosurgeon all thought were tumours - metastatic because more than one. They were ring enhancing and surrounded by odema.

I was never convinced by that and I dragged my feet (not literally ) so as not to be rushed into things. My friends and family were moaning at me that I wasn't getting on with things quickly enough but luckily it turned out that my instincts were right. At the stage the neurosurgeon wanted to do a brain biopsy 'at risk of paralysis or death', I was feeling fine and symptom free and really did not want to go down that road. I'm so sorry that you had to - what a nightmare!

My brain lesions are no longer ring enhancing or with odema and have shrunk but are still fairly big. The steroids are for a spinal lesion.

With regard to treatments, I don't know. Amazingly, my body seems to have done a good job of dealing with the original lesions. Makes me a bit scared of bringing in the big gun medications.

Hope you continue to improve and feel better!

Cheers
Sandy

[helenk579]

Hello !
I am also a new member. Would a newcomer be warmly welcome here? Good day you guy !

[KoKo]

Hello to HelenK

Here's a warm welcome: Welcome to MS World HelenK

Why not start a thread and tell us a little bit about yourself?

Anyways, glad you found us here!

Take care,
KoKo

[Kt1975]

Tumefactive ms

Does anyone have info or experiences with tumefactive ms? I was diagnosed with it in June and would like to hear about therapies and doctors if anyone has suggestions.

[sprinkles]

Hi,

I think you emailed me. For anyone else looking at this, since I haven't posted in awhile (although I am still an avid researcher on here), this is how I am doing now.

First of all, I FINALLY found a nurologist that is good and that I like. I saw him this Tuesday and then also saw the head of neurology at UCLA (major university) this wednesday. Both of them were on similar pages (and willing to share information with each other).

I had started getting very debilitated and stopped all medicine on my own in early June.

Basically my large "lesion" has actually shrunk (hard to say - Avonex, IV Solumedrol or just time). I do have a new lesion forming on the other side of my brain and the UCLA doctor is convinced that I am probably getting a new lesion on my spine, as new ridiculous problems have started in my legs and arms (weaknes, pain issues, etc). Not to mention hosts of other new problems including numb face and half paralysis feelings, all happening way to fast.

UCLA said that "tumefactive MS patients" can actually have the potential to do very well.

Both UCLA and my new neuro want me to start copaxone.

I have started gabopentin which is helping "nerve pain"

UCLA wants me to start Bacloven (sp), for muscle pain

UCLA is also suggesting PT for balance and walking issues.

The top dog at UCLA could not answer the question of why this is progressing so very fast for me (she did agree looking at my history that I absolutely probably had relapsing - remitting MS for many many years (un-diagnosed and un-treated).

She basically said time will tell, if this will turn back to relapsing-remitting or if it will continue it's current progressive course.

Both doctors agreed that I need to stop the steroids for awhile (I have been on prednisone every other day for 6 months plus IV solumedrol every three weeks). They both are hoping that the oral Ms pill will be out within the next 6 months and want me on that if/when it does.

So basically, even though I have been rapidly declining (still better then brain cancer, lol), I am positive this week, as at least I have finally found caring compashionate doctors to deal with. I think this is a key for anyone with MS, but especially important for "tumefactive MS". As the stuff on the internet can be really scary about this and like me, I've had my fair share of doctors in the past 8 months who were complete idiots.

God Bless everyone and good luck with whatever form of this MonSter!

Tammy