Decisions Made

[chrischris]

Red, with all the thought and research you've put into this surgery, I believe that in your heart you have already made your decision. However, you truly want the doctor to confirm your decision when you see him.

I know you will do what is good and what is right and what will be best for you and your family.

As others have already stated, I am behind you 100% with your decision, and if you ever need another shoulder to cry on, I'm here.

God will be with you every step of the way.

[Wink]

Carol,

As you well know, I have remained silent. The reason being that a decision of such magnitude belongs solely with you and your immediate family. And eventhough your loved ones are so closely involved, ultimately, it is going to be your decision--and yours alone; for it boils down to your own life, the quality and peace thereof. However, it does look as though you truly yearn for feedback to help aid your thoughts, and all I can do is act as if I were in your shoes, so to speak, and not as Carol.

I believe the drug you are speaking of is Tysabri. I did a little research on it, myself. You may have read these articles, but I'm posting them for you just in case you haven't. Every little bit helps. Although there is a risk with any drug, from all that I've digested, Natalizumab (Tysabri) now seems to be extremely promising. Click on this link and scroll down and see Original Articles: A Randomized Placebo-Controlled Trial of Natalizumab for Relapsing Multiple Sclerosis. Click on PDF.
http://content.nejm.org/content/vol354/i...ndex.shtml The New England Journal of Medicine

Also, click on the below link. Scroll and see: Do Over
http://www.britannica.com/eb/topic-41144...f-Medicine

Wink

[Wink]

red1030 Wrote:The research has shown me that they have a very good understanding of why the deaths occurred with such a high percentage of people on the drug. This drug lowers a person’s immunity even greater than Chemotherapy would … therefore; a person is at risk for infections of all sorts. The deaths were the result of a brain infection that will typically occur within 12 hours of the infusion and then a person’s life span is about 12 hours post the first signs of the infection. This infection is called PML. There is no way for our medical professionals to protect a person once this infection has grasped its victim, therefore death is imminent.
Accordingly as you can see, while the odds are in my favor that this would be a miracle drug, the side effect is devastating if you happen to be one of the unlucky few. More recently, they have learned through research that if you stop the current immunity lowering drugs that people with MS take, then the outcomes are better. There are about 17,000 people on this drug in the US right now and there have only been 4 associated deaths at this point since it came back on the market in 2006. The odds are good. However, the risk remains…but is it any different than having a simple surgery? That was my question?

http://www.medicalnewstoday.com/articles/41270.php
Carol,

This is an excerpt from the above link. Note the bold print I inserted:

Progressive multifocal leukoencephalopathy (PML), a rare and potentially fatal, demyelinating disease of the central nervous system has been reported in patients receiving TYSABRI. PML occurred in two MS patients who had received TYSABRI with AVONEX and in one Crohn's disease patient who had recently received an immunosuppressant. In placebo-controlled trials of TYSABRI in MS, the incidence and rate of other serious infections were balanced between TYSABRI-treated patients and controls. Serious infections reported in TYSABRI-treated patients included pneumonia, urinary tract infection and appendicitis. The overall incidence and rate of common infections were also balanced between treatment groups. Commonly reported infections included upper respiratory tract infections, influenza, urinary tract infections, and gastroenteritis. Herpes infections were slightly more common in patients treated with TYSABRI. The incidence and rate of other serious and common adverse events in clinical trials were similarly balanced between treatment groups. Serious events that occurred in TYSABRI-treated patients included hypersensitivity reactions, including systemic reactions, depression, and cholelithiasis. Common adverse events reported include infusion reactions, headache, fatigue, and arthralgia.

[capricorn]

Oh Carol>>>>>>>.I don't know what to say except God be with you. I don't envy you making this decision but do have confidence that you will make the right one for you. An extra prayer is going on for you to have clarity of mind and strength in making this decision.

God bless you,
CAP xo

[sweet tooth]

dear we are with you no matter the road you travel and you well know that we are not alone love ya

[halftrak]

Red, you are one of the most smartest and talented woman I have ever met,whatever you decide, just remember you have many friends on this forum that will be behind you 100%,you have always been there for many of us,you listen to us all about anything and everything no matter what it may be about.Now we are here for you,I wish you the best and we will meet again, love halftrak

[Bummer Knees]

Red

As I have said before you are a lady of great strength. I understand where you are with your research.

I have shared with you about my oldest daughter with the 145 hospital admissions and the many times the doctors came to us with medical choices needing made and asking that she become part of a medical study.

I will be praying for you.

Bummer Knees

[Lilly]

Oh Red,
God has given you high intelligence, so that you can, & will, make the right decision for YOU. I pray for your continued strength in this battle!
We are here for you, no matter what !
God Bless you & your family, Lilly

[sparkey]

This is a very touchy subject for me. I lost my father to MS when i was 13 yrs old. I was very close to him, and being the person i am today ( in the medical field) i was the one that stayed up late by his side to walk him to bed when the lights went out, as he was so shakey he would fall. My father told me before he died that i would be the one that missed him the most.

He had MS for 8 yrs, and as we know there is many types of MS. He was one of the unfortunate ones that lost his life at a early age of 44 due to a blood clot that traveled to his lungs getting on the examining table at the doctors office. My father was the love of my life. This is such a touchy subject for me and brings tears to my eyes, as i have always said i would do anything to find a cure for this terrible disease.

Red, i take complete admiration to you for thinking of trying this drug and helping all the other people in this world fight this terrible disease. If anyone would try to help , it would be you from all i have read about how you help people. I have always prayed that someday they would find a cure.

My father has been gone now for 30 yrs. and now my brother in law has MS also. Please know that my prayers are with you in whatever you decide. You are a strong woman and god has a plan for each of us in this lifetime. Do what you feel is right. You and ONLY you can make this hard decision, and i am sure you have your family and everyone of us on your side to whatever you decide. God bless, and thank you from my father : )

[Pooh]

Carol

You know this isn't something that I can give an opinion on as I am also being tested for auto-immune disorders at this time.

What I will say is that this decision is between you and Del at this point. You both need to sit down, talk about all the risks, benefits, etc. Then weigh your options. I don't know what that large amount of steroids will do to your system over time and that is another thing you should do research on - has there been long term effects of this drug studied? etc.

Good luck with what ever you decide - I am with you no matter what.