Friday, May 6, 2011

Just a simple trip to the doctor--here we go!

A few weeks ago, I went to meet yet another new neurologist in my arsenal of MS doctors. I now have neuro's in Tampa, Asheville, NC, and Sarasota. Since I live in Sarasota, my husband especially feels I need to have a local neurologist that I can depend on. I'm still not sure about that one, but am abiding by his wishes, since he is my caretaker. Since I had my CCSVI procedure 8 1/2 months ago, I don't really think of him as a caretaker anymore, cause I'm doing more and more things to help myself.

I fired my local neuro of 13 years a month ago, being a bit disgusted with his NO more CCSVI for you attitude. I had asked him about what he thought about CCSVI last June during my every 3 month visit and he flat out told me, No way, "I do NOT want you to do that, it is too dangerous, people have died from that, this is just another one of those crazy things on the internet." I respectfully debated the point with him and left the office, more determined than ever to find out everything I could about CCSVI.

So, I went about my way, with God as my wing man, educating myself and then setting up for my own CCSVI procedure in Tampa (which is only 60 miles from my house) - that was a total God-Thing too. The Lord just opened up every single door for me, almost as if He was saying, "Well, what are you waiting for? I've been trying to get you off those drugs for years, I've found a new and better way that's gonna make you feel a lot better. Trust me, I've provided your out. Go for it." So, I did "go for it" with some pretty remarkable results, feeling way better than I have in literally, years. 

Fast forward to my new neurologist in Sarasota. He was in partnership with my old neuro, and just left their practice about 6 months ago to branch out on his own. He's a very smart guy and is known in this area as the best MS doctor in these parts. I had seen him around the other office for years, waving to him, and he attended some of the those early MS walks held here in Sarasota. So I thought "Why not give him a try?" He's the best MS expert in town, let's find out what he thinks about CCSVI, plus it would be nice to have a new perspective on my 5" thick MS file- another set of eyes to peruse my crazy and strange MS case.

Not surprisingly, although his stance on CCSVI was a bit more open minded than my other Sarasota doctor, he was still in the let's wait for more data, there are some trials going on in Buffalo, it's too new, mode. My husband proceeded to tell him that I was the "poster child for CCSVI in this area," totally throwing myself (hook, line and sinker) into everything CCSVI, which he chuckled at. He acknowledged that yes, he had received the invitation I sent him to our Opening Minds for CCSVI Educational Seminar, but he couldn't make it because he was swamped (I wasn't buying that one, but I just smiled.)

Through the course of the appointment, I told him emphatically that I would be doing the CCSVI procedure again if and when needed. "Why shouldn't I?" I said. "It's so simple and it's helped me more than any of the different MS drugs I had been on over the past 13 years." He winced a little at that. He pushed hard to get me to check out Gilenya and when I told him that I had read there had been 84 deaths in the clinical trial phase of the drug he told me, "No - you are wrong about that." I said "No, I don't think so, I read there had been 84, I clearly remember," and he looked at me with that  - "yeah, right, she's got MS, she can't remember anything clearly," arrogant look. 

All in all, it was a nice, long visit, and I was surprised when that he spent almost 90 minutes with me and my husband--ok, I'll give him one score for that.

I came home and pulled up the article on Gilenya about the 84 deaths, printed it out, highlighting the 84 deaths (only 12 were from MS, and 72 from renal failure) but still there were 84, put it in an envelope and mailed it to my new doctor. Might as well start breaking in the new guy now. Those days of " You're right doctor, you know everything about MS and I'll follow your advice to the tee days, are so OVER for me." 

So, let's take a poll on how all my various neurologists stand on CCSVI:

Asheville, intrigued and open minded. Watched both my before and after videos. Had his PA call me for more information because her Mom has MS. I would put him on the plus side. Definitely opened minded (+)

Sarasota, past - Very closed minded. Has his head in the sand about it, although he did refer another one of his patients to me to learn more so I know there's always hope. Very negative (--)

Sarasota - current - Still on the fence, but says he's open minded. We'll see about that. For now, I say negative (-)

Tampa up at USF--Thinks there is definitely a connection between MS and CCSVI. Has a list of IR docs he hands out to his MS patients who are interested in finding out about it. Pulled me from my exam room, during my appt. to come over a talk to another one of his patients who was interested in it and wanted to learn more.
Very excited about the possible connection. (++)

So, there you have it, four neuros split right down the middle. I think the CCSVI acceptance tide is turning, and it's only been a year! Thank you Lord for my healing from CCSVI. It has been the desire of my heart to get well and you listened.

My verse for today is from Psalms 37:4

"Delight yourself in the Lord, and He will give you the desires of your heart."

Dear Heavenly Father:

Thank you for watching over me each day. Thank you for my continued healing. Thank you for answering my many prayers and delighting me with the desires of my heart."

In Jesus name I pray,

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