Roller Coaster called CCSVI

It is quite a roller coaster of emotions after CCSVI. Dr. Arata expressed there were two "milestones" for lack of a better word, to acheive post surgery. The first being within the first 2 weeks post procedure. If symptoms return within this time frame then it is a good indicator that the valves weren't successfully destroyed or torn allowing blood flow through. Unfortunatly doctors are unable to see when the valves are torn so only by hearing it or feeling the valve tear will they be able to confirm it. So it still may of torn successfully even if they weren't able to hear of feel it tear, so that is why if the symptoms have returned then it is known that it didn't tear. The second milestone is around the 3 month mark. At this time he expressed that there is a chance that the valves could heal back in such a manner that it will cause scar tissue by closing up the valve again. At this point your symptoms would come back. He said if this was the case, they could go back and at this point visually see the scar tissue and more easily distroy the valve. So I felt very hopeful, and excited as the two bumps both seemed to be able to be fixed....However I must say the optimism came and went. It is quite emotional always wondering, self checking, and stressing wether your symtoms were returning. When you have the liberation treatment done, some symptoms are relieved instantly like for me fatigue and brain fog. However some take time...a long time. So it is then when old symptoms are showing their ugly heads that I have a daily struggle and wonder, am I restonosing or do I just have to be more patient?

Diagnosis Day

Today Matt and I drove up to Virgina Mason in Seattle to see the head of the
MS department of neurology and get some answers.

All morning I felt like my heart was going to jump out of my chest.
I kept suggesting the idea of ditching the whole idea and going to do something more fun...
I am sure there were a million better things to do.
Matt said he would drag me by my heels if he needed to.

We were greeted by an enormous board of doctor's names that could of been close to a thousand and made me start to feel dizzy and tired just looking at it.
I was close to bolting...if I could just walk.
After getting lost we finally made it to the right place.

We met my Dr's nurse who cheerfully said,
"Are you a new patient?"
I said yes.
He then happily says
"Welcome to Virginia Mason we are happy to have you here!"

I thought how he could of replaced "Virginia Mason" with "Disneyland" and it would of sounded the same. He was very chipper.
I didn't feel his same enthusiasm to be there.

After he left and Matt was flipping through a magazine I quietly sat waiting thinking,
"What if she comes in and tell's me I AM crazy....I have started down this road, and it ends up her saying it IS in my head."
I thought I was going to throw up.

My doctor comes in and sits down and casually says.
"What can I do for you?"
Like I am needing to order curtains and need assistance.

She sees my confusion and says,"Just start from the beginning"

I felt scattered and nervous trying to explain and summarize years of symptoms and agony for the next 20 minutes. And thinking after explaining every symptom, I must of lost her by now and I am sounding very crazy.

She thinks I am crazy. I just know it.

Finally I stop and ask, "Am I totally confusing you?"

She answered, "No you are doing very well actually."

I liked her after that.

She pops in my my brain MRI DVD and mumbles how great and clear the images are. I instantly think...Oh great, here it is... she is going to say, "Looks normal to me.... I don't know what is wrong you."

After more medical mumble and very impressive unspellable big words come from her mouth.

She sits back on her chair and says that she can see 8 or so lesions in my brain scan and that I have Multiple Sclerosis.....

She said it. Just like that. And then sentence didn't end in crazy.

She also didn't say...
nothing here buddy...nope can't see anything....or what are you doing wasting my time lady, get outta here!

Nope, she said it is Multiple Sclerosis.

I then said... "could it be migraines?"
She said...."do you get headaches?"

no.

I then said...."could it be lyme disease?"
She said...."did you get a bite at anytime?"

no.

She went on to explain why she believes it is multiple sclerosis and not anything else and that according the brain scan it is at the beginning and mild.

However my symptoms are bad and severe....

glad she noticed.

She said you can show mild lesions and have severe symptoms and the symptoms don't match the symptoms just help confirm the diagnosis.

Ya whooo. I am not crazy.

I knew it! Sort of.

So then she ordered a spine MRI because she was worried it was going to show the rest of the lesions, and a spinal tap to be done right away so she can find out what kind I have and how severe it is.

Bring it on.

So there you have it. I have Multiple Sclerosis.

I am not crazy,
I am not just lazy,
and I am not just a really slow walker.

So what to do first?....

1. First thing I need to do is figure out how to spell it right because I have had to have "spell check" fix it each time I write it.

2. Second thing is look into a getting a maid.

3. Third...google search "cool looking wheelchairs"

How do I feel?
At peace.

I have been suffering in silence with SOMETHING for a very long time. And just haven't had a name. How do you tackle a nameless trial?

Now I can take Multiple Sclerosis by the horns...