Hi All,
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. **
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. **
Comment