Results!

[1RiskyRich]

Guys, do your homework. Most just do what their doctor tell them to. It's your body have a say in it. If you always do what others do then you should never expect different results.

[DavidinKnoxville]

It does seem to be that Rich is right about these cells in our immune systems. That's why the drugs like Rituxan and Ocrelizumab are a focus these days. I had my first infusions of Rituxan in July. I'm waiting and looking to see what it effect it has had on my MS.

I do believe wholeheartedly in what you're saying about taking control of your life - it's not the doctors or the nurses. It's your life. It's my life. You are you're best advocate. And getting into the healthcare system without an advocate is the worst thing possible.

David

[Tinker-Belle]

That's what I like about my neurologist...he talks WITH me, not AT me. And, yes, we must do our homework.

[Ashirva]

Wise words, Richie!

It's unfortunate that most of us learn the hard way that we've got to be our own advocates and learn all we can about every aspect of ourselves and OUR best way to live.

There are some great doctors out there who will support you and work with you, but there are also some real duds!

Good luck on your journey!

[Fancy1959]

1RiskyRich, hi it's Fancy1959. I firmly believe that you have to be your own body's and your own health primary advocate. So I do agree totally on this portion of your post. The next portion of your post is what I have problems with. Unless you have proof that, "Most just did what their doctors tell them to do." please don't belittle MSERS in genersl. As I have stated over and over again information for us is good and information is our friend. Why would I want to totally discount the experts advice who I pay to oversee my health? I take everything they suggest with the proverbial grain of salt. Then I go to physical therapy to become stronger . I setup my own exercise room in my house to push myself harder. I ride horses to strengthen my core and my balance. I take charge of every aspect of my health that I possibly can. I believe it's our job to ask for more when more is needed and also our job to ask for less when less is needed. Unfortunately for many of us MSERS who have lived with this disease for a long period of time, this disease is the one that set our course and our long-term outcome no matter how hard we fight it! We can make it slow down and we can help it to not hinder us as much. But our primary long-term solution is the next new therapy that might cure this dreaded disease, this dreaded monster, we call MS.

[1RiskyRich in reply to Fancy1959]

Thanks for your reply. I'm not belittling anyone. I am strictly pointing out facts that I have personally experienced. I belong to 4 MS support groups. Each with a minimum of 20 people. That is atleast 80 members. All except "1" besides myself questions anything. All the others you ask why do you do that and all say the same thing "My neurologist says so". Out of 80 only 1 will take the initiative to find out why. From my experience, when I say most, that is an accurate statement. When I went abroad to have my HSCT treatment done my neurologist ask me Why would I want to go to a different country and die? I had my transplant on May 8th. Today marks 4 months. I'm still alive, some symptoms have totally reveresed, others are improving. IF I followed the 99+% (as per the math) of MSers I met, I would still be taking my 28 day infusion & who knows where my conditions would be. Nuerologist are smart people when it comes to treating the symptoms if MS. Not on MS.

[Fancy1959 in reply to 1RiskyRich]

1RiskyRich, it's Fancy1959. I am in the car reading your post to my husband. We had some questions about exactly what you had done. As we all know information is good and we were hoping you might share some with us. What did the procedure entail, how was it done, and where you found the clinic / hospital to do so abroad. If you think of anything else pertinent please feel free to add more. Do you know any results published by the country where you had the procedure done that are typical results after completing the procedure with patients fighting MS? I look forward to reply. Thanks for the info.

[agapepilgrim in reply to Fancy1959]

If you have the money for the therapies. You are very blessed. It's a different ball field when there is no money for physical therapy or cognittive therapy, etc etc or water therapy(which I would love) I know- do what I can with what I have ". It's just a bad week

[1RiskyRich in reply to agapepilgrim]

Totally understand. I'm what you would call from the wrong side of the tracks. I did not have the money. Bless those who have it laying around. I had to hold fundraisers to have it done.

[agapepilgrim in reply to 1RiskyRich]

i know all about "the wrong side of the tracks" and "trailer trash" dn hating to go to school after Christmas breaks because the "totally out of touch with reality" teacher would ask everyone to tell "what Santa Clause brought." That's when you learn to lie.

[5alive5]

Thanks @1 RiskyRich

So true listening to your neuro

Is important but you live with your

Body , you can only know how you

Feel at times you have to investigate

Find ways to help yourself from the

Side effects of Meds only you

Can advocate for you

Everyone is different, find out what

Makes you better

[Kj9681]

You are correct! I was the same way...a runner. I plan on getting it back. Found out that MS can be a real booger. Fighting the good fight!! Can't wait to get back on that trail!!

Blessings