10-09-2012, 07:39 AM #1Registered Member
- Join Date
- May 2012
- United States
Newly diagnosed w/ Tumefactive MS - First Incident
Back in March/April, I was diagnosed with Tumefactive MS. It's been a pretty bumpy ride since my hospital stay, but at least I'm alive.
The doctors who treated me at a top-ranked facility in California were 95% sure I had CNS lymphoma, 4% Glial Cell Blastoma, and 1% multiple sclerosis. When the brain biopsy came back from pathology, it was "yeah, it's ms!" - not something you would normally expect to hear.
I'm not really sure what to say at this point because I have so many thoughts; a. cause of disease b. prognosis c. support d. treatment
a. After being diagnosed with a disease of unknown cause, I began reading the literature the best i could with my slightly less operative brain. My current hypothesis relies on a staph. infection. I'm thinking that a deviated septum has essentially disrupted the drainage of my ethmoid and sphenoid sinuses and that Staph. was able to colonize. After breaching the thin layer separating the sphenoid to the brain, it was game on for those little - releasing alpha toxin and destroying the myelin sheath.
Facts: it's proven that staph.'s alpha toxin creates a demylenation reaction. There is a significant correlation between Staph. and MS. Staph. can penetrate the blood brain barrier. I had 2 staph infections in my nose during the acute symptomatic episode, experienced odd smells, and had major sinus issues. Last week I had a CT of my facial bones, which showed mucosal thickening of my ethmoid-sphenoid sinuses, deviated septum and a spur.
b. I'm slightly concerned about my prognosis with such a nasty onset. Anybody else diagnosed with Tumefactive MS care to share their thoughts/and or symptoms?
c. I'll come back to this one at a later time...too much to talk about.
d. Currently, I'm on Tysabri, adderall, fioricet, 50k iu/wk vitamin D, prednisone, flexiril (when i feel like it and antibiotics. These are really just temporary fixes to an underlying problem, an unknown problem. In 9 days, I'm going in for a balloon sinuplasty and septum correction. I'm hoping this corrects the true issue, though I'll be crushed if it doesn't because It'll be back to the drawing board. Suffice to say, I'm excited, optimistic yet skeptical, and nervous about the operation and results.
At 29, I was just starting to get a handle on life and then everything was turned upside down. It really seems like I'm having to start my life over again. Any suggestions on how to approach that?
** 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. **
10-10-2012, 06:36 PM #2
I am sorry that you have not had any responses yet. My guess is that not many people have tumefactive MS it is so rare.
Your research is very interesting and educational for us so keep posting.
As for dealing with such a difficult diagnosis at such a young age, you might want to check into the young adult message board, or at the local NMMS most have young adult support groups both in person and online.
Keep us posted on your progress.
Disabled RN with MS for 12 years
SPMS EDSS 7.5 Wheelchair (but a racing one)
10-11-2012, 05:52 AM #3
You are articulate, concise, intelligent, and obviously engaged in every aspect of your health care. We can learn from YOU!
Please continue to post and let us know how you are doing. I wish you well.
10-13-2012, 06:31 PM #4Registered Member
- Join Date
- Oct 2012
- United States
Tumefactive Multiple Sclerosis
I can actually help with this! (or at least I think so!)
I am also 29, and I also have Tumefactive MS. I know exxxactly what you mean about getting your final diagnosis, and having everyone saying "what a relief, you have MS!" In your head, you are also relieved that you don't have a tumor, or lymphoma, but you've just been handed what feels like a life sentence, and everyone is cheering and congratulating you. It's kind of a messed up scenario, but almost all of us with Tumefactive MS experience that. It's pretty overwhelming.
One thing I can tell you is that you are definitely not alone. This is a very rare presentation of MS, but there are others out there who are ready to help you in this journey. Research shows that about 1-2 cases of MS are Tumefactive MS. Tumefactive MS, as I am certain you already know, is defined by lesions that are greater than 2cm, or 20mm in size. There are several unique symptoms to Tumefactive MS, and it often has a dramatic and scary onset. (made all the more scary by doctors telling you you may have a brain tumor or a lymphoma!)
As far as prognosis, that isn't very well defined. But I do personally know of people who have been in a stable remission for several years. In many cases, it turns into a relapsing-remitting course, sometimes it continues with a tumefactive presentation, and sometimes it converts to a more standard MS. There isn't really alot of research, so it is hard to know for sure what the progression and prognosis will be.
As for what I can offer....I have done a fair amount of research on this too, and I would be happy to compare notes and brainstorm some of your ideas with you. I can also offer you a support system, if you haven't tapped into this already. We have created a facebook page about Tumefactive MS to discuss and learn about this condition together, as well as raise awareness to the greater MS community. There is also a private support group for those with Tumefactive MS which has a wonderful group of people who can relate to what you are going through. I can definitely help connect you to these resources Additionally, if you'd like to read a thorough account of another case of Tumefactive MS, you can check out my personal blog, which I started around the time of my diagnosis last year.
You can find the Facebook page by going to Facebook, and searching for Tumefactive Multiple Sclerosis. When you get there, send me a private facebook message and I will get you connected to the private support group.
You can find my blog by running a google search for mandy clive blog.
I am so sorry to hear that you are going through this. There is nothing fun about MS, and Tumefactive MS is a particularly frightening and confusing diagnosis to face. I look forward to getting to know you better, and introducing you to others who can help.
All my best,
10-20-2012, 05:13 AM #5
Hi there, I am really sorry you are going through this. I do not have tumefactive ms but I was diagnosed with MS when I went into the hospital after I went blind and it seemed like everything in my body controlled by my CNS went to heck. My MRI showed lots of edema and >10 active lesions (3 were ring enhancing lesions that were just over 2cm).
For me, it look 6 months of monthly pulses of solumedrol and a year of Rebif to calm my ms down but now I am doing fine, back to riding my bike every day, and dealing with just minor annoying symptoms. I am rooting for you.