Monday, May 3, 2010

Day 6 after ccsvi Note to people looking for ccsvi treatment, and how I was diagnosed with RRMS

Wow!! I have so many of you reading my blog! It's Amazing! Thank you!
So I went to a follow up apt. today with my Dr. I was starting to get a rash, as well as cramps on the lower part of my right leg. He determined that I was allergic to plavix. The blood thinner he gave me to keep from clotting, so he switched me to baby aspirin. So I am excited that everything is going well, except for this minor allergic reaction. On May 28Th, I will go in for a follow up MRV to see if my veins are staying open. Oddly enough my leg cramps are feeling better today.

Note to people looking for CCSVI: I spoke with my Dr. again today regarding getting you all treated. he is going to take a different approach than his fellow ccsvi Dr.s who are getting shut down. He will code it under a vascular problem not relating it to MS, although he will study how it effects MS. We will know by May 17th if the hospital is going to let him proceed. He is very excited and has been in contact with Dr. Dake almost everyday. He (my Dr.) is trying to find a way to do this without getting shut down. So this is Great News for all of you. Lets keep hoping and praying that the hospital lets him do this. First meeting is today at 5pm keep your fingers crossed :)

Some of you who read my blog, just because you are my friends, love you for that. Don't really know a lot about MS. I mean you can google it, but you don't know how I came to find out I had MS. So here is my story. Back in Dec 2009 I started having dizzy spells. They were mild at first, just felt light headed like I needed to sit down. Then the headaches came. Terrible ones that would not go away for days. The first person I saw was my G.P. she said she thought I was anemic. Nope. Diabetic. Nope. And finally Dehydrated. Tested me for all of the above and nothing. Then my dizzy spells became worse. To the point where the entire room would spin for 30 seconds. One day I was driving home and I had a spinning attack and almost crashed my car because I could not see. My loving adoring most perfect husband took me to the ER. They told me I had vertigo. Which means the balance in your inner ear is off. They told me to see an Ear Nose and throat Dr. so I did. Lots of balance tests later No vertigo. So what was wrong with me? I started to feel like I was going crazy and it was all in my head. The dizziness finally went away after 2 long weeks, and next my eyes. I couldn't focus on anything, everything was blurry and it felt like my brain could not process what I saw. Off to the eye Dr. No honey you have 20/20 vision. Okay I am crazy. Then 2 weeks later my eyes are back and my feet are completely numb. Like they are asleep and nothing wakes them up. After 3 days of this again my husband takes me to the ER. They said and I quote, "If you are not dying don't come here" make an apt. with a neurologist. So finally I saw a neurologist in AZ. But not just any a Nero surgeon. He took an MRI and had to magnify it 3x to see that I had two lesions on my brain. When he realized I most likely had MS he referred me to a general neurologist and he sent me to have a L.P. or spinal tap. No fun No fun at all. The spinal tap caused such terrible headaches because the fluid was leaking that hey had to go in and do a blood patch to stop the fluid from leaking. Ouch! Just writing about it again hurts me. Long story short in Feb 2010 I was diagnosed with Relapsing Remitting Multiple Sclerosis. I have not taken any MS drugs because of there harmful side effects. I am taking vitamins and hoping CCSVI prevents me from having another attack. But like I said before we wont know for 6 months to a year. Thanks for reading.


  1. I just started reading your blog today and WOW are you ever lucky. Your MS specialist is awesome to be so open to this and your Vascular surgeon sounds amazing. I'm on the wait list for Poland some time next year, but it would be nice not to have to travel so far if your Dr. can manage not shutting down. I will be following your blog religiously :o) Thanks for sharing.

  2. Bless you...every day in every way. Thanks for continuing the fight for the rest of us!

  3. Thanks again for all your help and info!

  4. This is just how it should be!! This is the greatest story, just perfect, all of us should have this story duplicated. But alas, it is quite the opposite for everyone in North America, unless they have your amazing vascular doctor. I wish you everything good and pray your doctor keeps doing what he is doing. What an awesome doctor!!!...Bev

  5. Thank you all for your touching comments. Trina, I hope you do not have to travel to get this done. My Dr. will know and or be doing this in the US by the end of this month. After may 17th if approved by hospital I will be able to give out his name and contact info. I will not stop until you all have the same chance I did to get liberation. You are all in my prayers