If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.
Another week bites the dust. Another week bites me.
Usually when I get on here, I write about the positives of being disabled. Yes, there are positives. It’s a matter of like I always say, “putting one foot in front of the other”. There is another side to that coin which I don’t write about very often and that ‘s where you put one foot behind the other, make a pivot turn, and walk away. You hide and lick your wounds and can’t see a way to move forward. What I say to you is that this is good! Confused?
Sometimes it is necessary to go backwards in order to move forward. Pretend you are an artist and you’re painting on a canvas that is in front of you on the table. You try and try but you’re not getting the result you want. Then you stop and walk away to do an errand or whatever. When you return, as you enter the room, you can see the painting on the table. From this distance you can tell what is wrong about the painting! That is why many artists use very long brushes to paint. They need a better perspective and being too close to the canvas is detrimental to the outcome of the painting.
Anyway, that’s how it’s been this week for me. I’ve had to step back.
(I’m pausing here to read back over my last couple of blogs because I have a tendency to repeat myself. Good time to get yourself a cup of coffee. BRB)
Okay, I’m back. Well like I said above, right now I’m hiding and licking my wounds. The reason why is the pain I’ve been experiencing for over a month now. It’s very confusing to me. You see I have a constant headache but not a headache in the usual sense of the word. More like a head pain that sometimes feels like a headache. My neck is not stiff, but it is very painful. Everytime I move my head, I feel pain. I’m also very aware of my back up near the cervical spine. It’s a difficult feeling to describe. It almost feels like it did when I returned home from surgery on my spine. You feel the numbness and the pain if someone pats you on the back. Sometimes it feels like it’s burning or cold. Other times it feels like a pulling sensation. In either case, you are very much aware of your spine.
Is this MS? Is this a repeat of the Arnold Chiari Malformation that I had surgery for before?
I was searching for some answers last night. I wish I had saved the websites that I had visited for you because I found some interesting stuff. Did you know that Arnold Chiari Malformation and MS are sometimes misdiagnosed one for the other? Having a Chiari malformation, the base of your brain is lying too low and is preventing spinal fluid from flowing around your brain. That is what causess the headaches and a myriad of other symptoms. Why? The malformation is at the BASE of the brain, the cerebellar tonsils are low lying, as my recent MRI said.
The cerebellum of the brain controls so many things! So in actuality, even though you have MS, perhaps you have ACM (Arnold Chiari Malformation) and not MS! That stunned me. The idea that maybe I don’t have MS blew my brains out. Then I studied article after article and sat back and started thinking, which is worse? The ACM or MS. You need to read up on both. There is just too much information for this blog. I will post some links at the bottom of this page.
To think that I’ve been on the ABC drugs all these years for treatment of possibly the wrong thing, also unerved me. What if what I have is ACM? What if the old neurologist was on the right track finally in going over my file with a fine toothe comb. Well now see, this makes me all the more angry with him, if this is the case; because he should have done this in the beginning not seven years of being his patient; and then the hell of all those treatments with injections. There is something very wrong with this whole picture.
Quite frankly, I don’t know what to think. Doctors hate it when we research things online because we jump to all sorts of conclusions. That’s true. But what if?
There is something else I wanted to share with you that a friend share with me. YOU MUST READ THIS ARTICLE! http://en.wikipedia.org/wiki/CCSVI. Here is part of the first paragraph;
Chronic cerebro-spinal venous insufficiency (CCSVI) is a term used to describe compromised flow of blood in the veins draining the central nervous system. It has been hypothesized to play a role in the cause of multiple sclerosis (MS). This hypothesis was first put forth by Paolo Zamboni in 2008. An endovascular intervention for the syndrome has been attempted however further research is required to determine if the benefits outweigh the risks of the procedure.
It is my personal opinion that this Dr. Zamboni may be on the right track! I am trying to locate an email for him as I would like to see if I can be seen by him. Can you imagine a cure for MS!
My husband came across an article maybe 6 months ago about vascular insufficiency and it’s possible tie-in to MS. We wondered about it because I have lymphedema which is caused by vascular insufficiency. So please check this out. It might be something you are not aware of. We need to bring it to the forefront here in the United States. The only places that will do this procedure is in Italy or in Romania.
Anyway, I hope I’ve given you some helpful information today. I see my new neurologist on Tuesday and I will keep you posted.
My status today and last week? Quite ill and in a lot of pain.
Here is to your having pain-free days and as always, please sign my guest book.