Some cautions to note

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby notasperfectasyou » Sun May 24, 2009 8:06 pm

Marie,
It's really great to have you back exercising your fingers. I definitely appreciate the "full disclosure". I just have to say, all the MS therapies have something that's complicating. I think we need to expect side effects and warnings and other "be carefuls. I mean, just how was that very first Flagyl pulse?

I'm really looking forward to hearing about how it all goes for you and Jeff and everyone else on the recovery. I'd like to know if you have thought about expectations of returning "superpowers"?
Ken
User avatar
notasperfectasyou
Family Elder
 
Posts: 774
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Advertisement

Postby mrhodes40 » Mon May 25, 2009 7:30 am

Thanks! I wanted to be sure I was not just talking healing all the time. It's a bigger surgery than I expected, I am not back to normal yet a week later

I had a bit of a complication in terms of my coagulation/the surgery site and have a sore stomach so I am pretty gimped up. however I can bend my weak leg a little better already 8O and when I take a hot shower--which feels good on my still really sore head and neck--I GET INTO THE SHOWER WITH THE SAME STRENGTH I COME OUT WITH...... 8O 8O 8O

I'll make a regimen entry, I think that is the best idea so I can keep on topin in my own thread here...
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby peekaboo » Mon May 25, 2009 7:32 am

Marie - sounds like progress to me :!:
User avatar
peekaboo
Family Elder
 
Posts: 627
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby Sharon » Mon May 25, 2009 7:39 am

Oh, Marie!
You wrote:
I have no inflammation and I am SICK and TIRED of being told autoimmunity is IT and that I am just screwed sorry, so sad, see ya'; you're just unlucky.


When I was dx'd my MRI's showed no inflammation in both the brain and the spine. The neuro explained all this to my husband and I - he said I had lesions (which were not active) and I had no inflammation. The neuro handed me a stack of videos and books on the different CRABS, told us to go home and read and then let him know which one I wanted to take. What I read in that boatload of information was the CRABS dealt with inflammation -----I didn't have inflammation, so why should I take them? Went back to the neuro and told him that I would not be taking any of the CRABS- I would figure something else out. So, I got on the Internet and found THISisMS - been here since 2003 - the wealth of information, the discussion (and yes, some knock down drag out fights) have been an invaluable tool. Your journey, along with others, as you went through the antibiotics regimen; jimmylegs with the supplements; Chris and Revimmune; gibblegook and the herbs; those that have tried the CRABS; Frank and his dear wife; I could go on an on.

I also have had trouble with the autoimmune theory - for me, it just never made sense. I understood the immune system was getting activated, but why? Now, I think we have an answer! I am hoping that when I get back from Stanford next week, I can go to my neuro and say, "I told you so". Don't get me wrong, I like my current neuro - he has even started to write positive articles about LDN for the Natl MS Society - that is quite a leap for him and he has probably had some negative feed back from the big pharma companies who pay him to speak.

Enough rambling on my part.....Thanks again for the heads up on notifying the GP - I will take care of that tomorrow.

Hope you are better today than you were yesterday. :wink:
Sharon
User avatar
Sharon
Family Elder
 
Posts: 1235
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users