CCSVI in two days

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

Re: CCSVI in two days

Postby FLJhawk » Fri Oct 26, 2012 10:18 am

Ok, here is a 7-1/2 month update. My, how time is flying.

I am still doing well. My MS symptoms remain very minor. I remain off of Beta, but continue the supplements and LDN. My diet hasn't been as good as it should, though! I need to be more careful with it. Symptoms I do feel can include numby arms, slight fatigue and some unsteadiness when standing. Most of this occurs after I have over-exerted, and will mostly clear up after a few days of relative rest. I would not consider myself having a disability, though I won't be doing any mountain climbing! I admit that some symptoms are now "normal" for me, such as some numbness in my wrists that I guess I have gotten used to, but life is good.

I remain pleased with where I am and am especially grateful that I apparently have not gone progressive. Yet, anyway!
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Re: CCSVI in two days

Postby FLJhawk » Thu Feb 14, 2013 3:13 pm

I haven't been here for awhile, but here is my 11 month update.

Since my last post, 6 months ago almost, I have been doing pretty good. I have been off all med's other than LDN since August, including Betaserone. I continue with the supplements, but my diet has been horrendous! Shame on me!

Some symptoms do seem have gotten a bit worse in the few months or so, but they are generally different than what I had a year ago. Before, I would get leg pains and numby sensations in my wrists, in particular. There would be some dizziness at times, or maybe a slight loss of muscular coordination, and sometimes fatigue and cog fog.

Mostly what I feel now, and it can change from day to day, is like a low level twitching in my legs and arms, but normally there is no overall twitching - just a sensation. Sometimes, though, there is an actual vibration in a localized area. I will get it in my left pocket area, where I carry my cell phone, and I will think the phone is vibrating, but it is me! It is minor, but can be felt. My right thumb will occasionally twitch. Some of this might be related to caffeine, as i have been drinking cola for lunch, but even when I skip it, I will get the sensations. Also, I will sometime wake up during the night or in the morning with my arms feeling heavy and like they are under pressure. Most of this sensation will die down after a few hours. I can go weeks and be fine, then one day it will show up again and keep recurring each morning for a few days or weeks. Very unpredictable.

Fortunately, there are no real pains, fatigue or cog fog. Some of my symptoms might also be related to getting old, as I will be 58 next month. I am slender in stature, but I foolishly engage in very little exercise. Lots of my issues might be related to simply not getting exercise. I keep saying I will get out and jog or bike more while I can, but I just haven't done it yet. Sigh.

But, I remain far from disabled, and my initial concern that I was going straight from an MS dx 1 1-/2 years ago to a progressive stage that was quickly leading to paralysis has been reduced considerably. Again, I have no idea if LDN and/or CCSVI is playing a role. Compared to where I feared I would be a year ago, I am pleased. I think that if BG12 finally comes out I will ask to be placed on it. I know I still have the disease - I am not cured in the slightest.

I am hoping the sensations I am having in my legs and arms will die down, as they have previously in the last few months, and I will try to again cut way back on the cola and start getting out there for some decent exercise.
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Re: CCSVI in two days

Postby Cece » Fri Feb 15, 2013 4:40 pm

I'm glad the update is a good one!
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