2 year neuro visit update

[tingletingle]

Hi gang,

For those of you who don't know, I've been following a slighly mad routine of diet, exercise, and meditation in an attempt to reduce my disease progress. I do also believe in taking a DMD as part of the 'do whatever it takes attitude' but unfortunately had to go off the Copaxone last October due to complications. Anyway, last week I am pleased to report that my skeptical neuro has given me an excellent report on the MS front.

After two years, and nine exacerbations, I have had only one relapse in the last 12 months and only added one new lesion from two years ago! Yippee! Yay. Well, it okay. The neuro is really happy and thinks my MS is stable. I'm now only 13 months away from what I hope will be stability so still keeping fingers crossed.

But, and there's a pretty big but, it's not all beer and skittles. Yes, it appears that my very small meningioma that was first discovered two years ago with the MS diagnosis has rapidly trebled, nearly quadrupled in size and has to come out via a craniotomy on October 14. I will be in hospital for 5 days and then recovery at home for 3 - 7 weeks.

The funny thing is that now I get why I feel as if my MS strain is special with symptoms like bilateral numbness and tingling, stuttering problems, cognitive problems and headaches. It's the bloomin M in my head.

I love the game of golf and have have been dreaming about it so much that it seems I've developed a golf ball sized M in my brain. Joking aside, I am feeling blessed about it all because it wasn't my decision to have the MRI. I was forced to for a work assessment.The good news is that the survival rates are good and the risk is low, and I'll have a pretty good scar to show off at parties! Imagine the stories - shark bite, alien abduction.

Blessings
Alex

[sllowe]

Oh, 1 relapse vs. 8 = totally stable (Shelly's book, hah). Why, any neuro and MS'er would agree!
My neuro says if he didn't know better...He'd never guess I had MS. SO, you think we is kin? haha

But, then YOU go ahead and throw a golf ball in the wrench....aaagh,our worlds are not so parallel now.

Well my friend, I do look forward to the doozy of a story you will tell. Heck, I'm beginning to think the world we live in now doesn't hear enough good ol tall tales ;) hahah You have time to get together a few good ones to tell the youngins :)

All joking aside, I'll be praying for you and the surgeons. Nice to see you, and sending healing thoughts your way.
-Shell

[tingletingle]

Bahaha! You have made me laugh JJ. I think we have the same quirky sense of humour because I enjoyed the Edward Scissor hand image.

Yeah, you're right about stability being relative. 8 relapses first year, 1 relapse second. That first year was horrendous so we were both delighted with one extra teeny tiny non enhancing lesion compared to 2 years.

Ah yes the dreaded fine print! Dang! I guess i forgot that we're all tied together for life with MS. Thank you my Aussie cyber friend.

Blessings
Alex

[supermum_ms]

Hey Alex, you know your MS is probably stable from your neuro's perspective, because your arm hasn't fallen off yet lol or its because you've only had one relapse in your second year since dx, and compared to how many you had in your first year, it kinda is more stable though if that holds any meaning only time will tell.

I thought ozzie guys showed off their scars with he-man pried, hmmm tall tails comes to mind though usually they've downed a case of VB and fell off the back of the ute but the story's they tell do have lots of entertainment value lol what about the  hair dresser was Edward Scissor-hand's apprentice or you nicked your self shaving..........your back hmmm those would do lol

Keep believing..........JJ

lol if we'll have you........you need to learn to read the fine print my friend!

[tingletingle]

Hey JJ, yeah in words of Forest Gump 'life is like a box of chocolates...'
That's great to know that I am actually special. I feel validated, thank you. The greatest strength I have in my weakness is my faith. He is all I need and am very grateful for everything He has done in my life, including getting me to have that MRI which I was so adamant that I didn't need.

Hi Lulu, yes don't know how or why but he signed of that my MS was stable, minimal disability without progression. So you wouldn't know I had MS unless someone told you. Of course I look well darliiiing! Must be the George Hamilton suntan.

Yes, the surgery was a shock but meningiomas are the most common of the brain tumours and are overwhelmingly benign in most cases so I hoping that its all ok. They will only shave a tiny bit of my hair so by the time I go back to work no one will even know. Well, that's the plan. The operation happens in October and I'll be out of action for at least a month but I'll pop on by, if you'll have me.

It's a bright, beautiful day over here, it feels like spring is about ready to hit.

Blessings
Alex

[Lulu54]

Alex, I think  most of this is good news.  I'm a bit confused as to how the neuro can call this stable if you have had a relapse in the past year and added another visible lesion.  But this minimal change does sound good - or at least better than before.

The Meningioma surgery is cr ap to hear - I agree with JJ - don't you have enough going on already?  When is the surgery scheduled?  Please let us know and be sure to check in when it is over.

BTW I am sure you will look dashing with the shaved head- be sure to work on the creative story to go with the scar.
hugs, Laura

[supermum_ms]

Alex, hmmm!!!!!

SH!T but what the hell are you doing lining up for more, you've already got MS and that's already playing ping pong with your noodle brain, throw in a hungry meningioma and it's no wonder you think your special. um don't get a big head or anything but you kind of are! You'd get away with "sharp bite" in oz but alien abduction will only get you a one way trip to the funny farm, and sooooo not you.

Kidding aside, what do you need to get through this..............I want to help!

HUGS to you and yours..............JJ