Longest month of my life!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Post Reply
User avatar
alby
Family Member
Posts: 87
Joined: Wed Dec 30, 2009 3:00 pm
Contact:

Longest month of my life!

Post by alby » Mon Jan 04, 2010 11:35 am

Dr. Simka has scheduled me for February 10th for testing, and 11 for the procedure if any found. I am sure they would find vein problems.

The wait is so LLLLONNNNGG.
Every day seems like a month.
Can't wait.

I am so excited, even if I don't get any improvement (I'm sure I will), I'll be happy with stabilizing.

We are all on quest to defeat this disease for us, for our children, and everyone who might get this dreadful disease. We must win, we will win.

And who are the heroes? Dr. Zamboni, Dr. Simka, and their teams, to be the first to "boldly go where no man has gone before" as captain Kirk said it.:D :D :D :D :!:

User avatar
Mutley
Family Elder
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England
Contact:

Post by Mutley » Mon Jan 04, 2010 12:08 pm

That's graet news alby, the wait will be worth it!!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

User avatar
magoo
Family Elder
Posts: 574
Joined: Thu Sep 10, 2009 2:00 pm
Location: Charlotte, NC
Contact:

Post by magoo » Mon Jan 04, 2010 12:19 pm

Congrats Alby!!!!!!!!!
The wait will be worth it. I am so happy for you. Keep us posted.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

User avatar
crocky
Family Member
Posts: 69
Joined: Wed Nov 25, 2009 3:00 pm

Post by crocky » Mon Jan 04, 2010 1:03 pm

All the very best to you Alby - hope the month passes quickly for you - I absolutely understand how slowly its going - I have to wait until April - All the very best to you, and as others have said before me, keep us all updated! - Love Suzanne

User avatar
Rainbolt
Family Member
Posts: 33
Joined: Thu Nov 19, 2009 3:00 pm

Post by Rainbolt » Mon Jan 04, 2010 2:24 pm

So jealous - but also sooooo happy to see another MSer who will hopefully be seeing great positive changes soon! Good luck! I can't wait to see you posting about how it's working for you!!!

User avatar
alby
Family Member
Posts: 87
Joined: Wed Dec 30, 2009 3:00 pm
Contact:

Got my ticket1

Post by alby » Fri Jan 08, 2010 6:13 pm

i bought my tickets to Poland and hotel reservation. i am pretty much ready to go. another 30 days to go. I don't want much, just stabilizing would make me happy, so we'll see what happens.

User avatar
Mutley
Family Elder
Posts: 209
Joined: Thu Nov 12, 2009 3:00 pm
Location: England
Contact:

Post by Mutley » Sat Jan 09, 2010 2:59 am

That's great news alby, we're all ticking the days off with you!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5

User avatar
alby
Family Member
Posts: 87
Joined: Wed Dec 30, 2009 3:00 pm
Contact:

29 days and counting.

Post by alby » Sat Jan 09, 2010 10:59 am

This year is the year that MS will be defeated. I love this group, everyone in it and support given. I am sure I will see a few of us over there, we might even be on the same flight. I will write in detail about my experience, you guys can count on it.

User avatar
ozarkcanoer
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 2:00 pm
Location: St. Louis, Missouri
Contact:

Post by ozarkcanoer » Sat Jan 09, 2010 11:05 am

alby,

I know a month seems like a long time, especially with MS. But just think, you have a definite date !!! We will be looking forward to your posts and progess of course. And remember that February is when the first 500 Buffalo subjects will be unblinded !! February is a great month.

ozarkcanoer

User avatar
pgm1
Family Member
Posts: 73
Joined: Mon Nov 23, 2009 3:00 pm
Location: Canada
Contact:

Post by pgm1 » Sat Jan 09, 2010 12:10 pm

Hi alby,

A little less than a month now,so happy for you :D
Pam

User avatar
annad
Family Elder
Posts: 207
Joined: Sat Nov 21, 2009 3:00 pm
Location: Ontario, Canada
Contact:

Post by annad » Sat Jan 09, 2010 12:16 pm

Alby,
that's so exciting! When did you contact them for your appointment? I'm wondering how long the wait is.
best wishes to you!!!

User avatar
alby
Family Member
Posts: 87
Joined: Wed Dec 30, 2009 3:00 pm
Contact:

It is conditional.

Post by alby » Sat Jan 09, 2010 1:05 pm

I contacted Dr. Simka in December, and told him about my desperate condition:
I am EDSS 7 or 7.5.
I am on Novantron chemotherapy, which I hate. Even with that I am still getting worse. I told him the truth about my worsening condition. Every day I am worse than the day before.
numbness, weakness of legs and arms, problem with fingers, bladder problem, stiffness of legs, spasticity. Right hand fingers starting to act up on top of numbness and weakness.

If I could afford to wait, I would, but the way I am spiraling down, I can't wait. Next year may be too late.

For those who are curious:
Flying from Los Angeles to Munich, non stop with Lufthanza, then to Katowice, arriving there around 11 PM.

I chose to fly back from Krakow, decided to stay there for couple of nights.

User avatar
annad
Family Elder
Posts: 207
Joined: Sat Nov 21, 2009 3:00 pm
Location: Ontario, Canada
Contact:

Post by annad » Sat Jan 09, 2010 1:13 pm

Keep up the fight! Stay strong and we WILL see an end to this 'thing'.
Thanks for replying back.
Safe trip and get well trip! :D

User avatar
Katie41
Family Elder
Posts: 179
Joined: Sat Dec 05, 2009 3:00 pm
Location: Southern California
Contact:

Post by Katie41 » Sat Jan 09, 2010 8:38 pm

I'm so excited for you! Best of luck! Counting the days with you.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post