The beginning of the story/1988

It is 1988 and I am a hairdresser in Conroe,TX. Loving my new life with Randy, I remember standing behind the chair while working and noticing that my entire torso felt numb. Across my waist. Hmm, must be a pinched nerve is what I thought. We played on a co-ed softball team and I also noticed my left hand seemed somewhat uncoordinated along with a slight problem going on with one of my legs. The torso numbness went away, I got a brace for my left hand, thinking carpel tunnel. We got married in 1990. I had our son Dylan in 1991. We had stopped playing softball at this time so I did not really notice changes in my leg until I found it hard to wear flip flop sandles. My toes just would not hang on to them. With the hand problem never ceasing, and the new foot issue I was advised to see a nuerologist. An MRI was ordered and then the news "It is MS" was delivered. No major changes for quite a long time happened. I did notice that when I got hot things felt worse. My legs felt weak, like they just could not go as long or as far as always. In about 1997 I started Betaseron. Seemed stable. Then we lost our insurance and because I was feeling pretty ok did not worry alot about it. I had a pretty big flair in 2004 that left me with the "hitch in my giddy-up" I have today. I started Avonex at that point. I have developed what is called "foot drop". My right foot just feels heavier, weaker, less cordinated than my left. When I am hot, tired, stressed, it is more pronounced. I had been on Avonex until I started reading about CCSVI. I also learned about LDN around the same time. I decided that I was finished beating down my immune system with a drug that made me feel like crap once a week when so many of the signs of CCSVI are there. So today I am up to 4 mg of LDN. I hope I am realigning my immune system getting ready for a total transformation. My spasticity (stiffness)seems to be better than it was. I surely don't miss the "Avonex Hangover." Saying all of that, I suppose people should do what their gut tells them. Mine said no more immune repressing drugs. There is no proof that they do anything anyway, or should I say, not enough for me. Honestly, this last year has been the most challenging with my ability to walk distances without having a shopping cart in front of me or Randy close by for support. I guess I am at the 18-20 year mark they say most with MS are dealing with at this point. Less mobility, drugs or not.
My right knee has started hyperextending, "popping back". It gets worse the more tired my legs gets, which does not take much. We have a short walk we do with our dogs, about 1/4 of a mile is my max, and I use Randys arm for support by the end. Stairs are taken very slowly. A balance thing along with the weak leg. Now please understand---I do feel fortunate, compared to many of my fellow msers. It can be, and is so much worse for others. The thing is, I miss my old body. Randy and I fell in love on a raquetball court and the softball field. I know I am thinking very lofty. My dream is to be able to play raquetball again, but if all that comes out of this, is the ability to easily walk our dogs on a hot summer day it may be good enough. I will work hard to get a glimpse of the old body back though, just watch me!!

A short concise explanation of CCSVI

Introduction to Venous Multiple Sclerosis



Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging.

This is a very short, concise definition. The procedure to fix the problem is angioplasty of the jugular veins and sometimes the azygous (chest) vein. When the drs find it hard to keep the collapsed or twisted vein open stents are sometimes placed in the area.