Wednesday, May 12, 2010

New at Blogging, so be patient:)

I guess I should start out by introducing myself. I have no idea if anybody will even read this, but I figure it will be a good outlet for me, and if something I post on this blog helps just one person, I will feel like it was worth the effort. My name is Toby Bushman. I am 26 years old and have been married for over 7 years. I have four children, ages 6, 4, 2, and 1 and stay at home with them. When people ask me, "Do you work?" I respond, "Yes, I work my butt off. I'm a stay at home mom." :) I recently graduated with my associate’s degree from Utah Valley University and am transferring to BYU next semester to pursue a Bachelors in Psychology and a Masters in Social Work, all through distance education while my kids are sleeping. It's a lot of work, but it's something I'm passionate about and determined to complete. My husband, Jake, is an air traffic controller for the SLC airport.
I was diagnosed with Multiple Sclerosis on November 4, 2004. Two of my aunts have MS, so when the left side of my body went numb, and I was having neck pain and dizzy spells, I knew I needed to have some MRIs. I have 4 lesions on my brain and 2 on my spine.
MS is a difficult disease to have for many reasons. It is difficult to explain to people how MS affects me. So when I am going through a relapse of symptoms, like I am now, it is very lonely. Seems like nobody understands what it's like to appear normal, and yet struggle silently with overwhelming fatigue, dizziness, weakness, and pain. It is very scary to not know what the future holds for me. My biggest fear is becoming a nuisance to my family...having my husband and children have to feed me or, worse, change my diapers. The thought terrifies me. If I can just make it on my own until my children graduate high school, I will be extremely thankful.
But, for the first time since my diagnosis, I feel hope. The knew research about CCSVI (Chronic cerebro-spinal venous insufficiency) makes so much sense to me, and now it's just a matter of figuring out how to get tested and treated! I first heard about CCSVI when my aunt (who has MS) emailed me this link:
I cried tears of joy that day at the thought of living a life free of this disease. I have tried to be tested here in Utah, and have had some progress, but not much. I tried to get into Stanford, but they are currently not taking patients and waiting for approval for a clinical trial. I've applied to be a part of the trial in Buffalo, NY but even if I do get a call for that, it does not include treatment, just imaging. So, I've decided to pursue going to Poland to have Dr. Simke and Dr. Ludyga treat me. Currently, the wait is until 2012, but I'm hoping they might be able to at least get me in for imaging while I'm in Germany visiting my in laws this December. If you're interested in the Poland route for CCSVI, the place that is doing the Liberation Treatment is called Euromedic, and their official website is The information to register is on this site. If you call the main phone number, it's difficult to find someone who speaks English, but I got a hold of a woman named Marta who is the manager there and she spoke good English. You can reach her at 011 48 692 015 969. You're welcome to email me at if you have any questions or advice for me.
I have never been on any of the traditional treatments for MS, mostly because I've been having babies since I was diagnosed:) But now that I am finished bearing children, I've begun taking LDN (Low Dose Naltrexone), and it has helped me tremendously. Before starting LDN, I was ALWAYS numb somewhere, and now, I am very rarely numb anywhere. Until the past 2 weeks, I have not relapsed in well over a year, and it has been wonderful. If you decide to try LDN, I highly recommend getting it from Skips Pharmacy in Boca Raton, FL. They send it to me every 3 months and Dr. Skip is a pioneer in compounding and researching the drug as it relates to MS. Ok, well I think that's enough for now. I'll be in touch.


  1. I get to be the first to comment on your blog?!?! I'm so sorry you have to go through this Toby. But you are amazing and I look up to you so much! I'm excited about your quest! Please let me know what I can do to help you along the way!

  2. Hi Toby,
    my name is Kara and I know your MIL here in Germany. I had dinner with her and her husband about 3 months ago and told them about my MS. I believe I told her how I tried LDN for a year, (did not work), Copaxone for a year (did not work) not I have been on Tysabri for 3 1/2 years and I have been stable ever since. I was diagnosed 1994 and I am 40 now. I did not start on medication until I was 35, when I was finished having kids. I walk with a slight limp on my rt side as I never recovered from a "episode" 6 years ago. Would love to know if you are going to have the CCSVI procedure done. Please keep me posted.
    Thanks Kara

  3. thanks for sharing your info tobes. i love you and hope that some miracle will work out for you soon. i'm going to send this link to my friend karen that i have told you about. xoxo

  4. My friend Tomi sent me your link. I am in Utah too and was diagnosed last year. I have so much hope in the theory of CCSVI. I am currently pregnant, but will be joining you in the quest to be treated as soon as I have the baby. Have you tried Inclined Bed Therapy? I feel it has really help lift me out of my fatigue. Here's my blog post about it:
    I'm following your blog. Good luck!