Promises, promises

[Ringer1319]

There are a few posts that impact me harder than others and this is one of them. I watched this post for 2-weeks, unsure of what to say. I’ve started a couple of responses, but none were worth posting. For me, MSWorld can be a tough place. There are even times when I need a break and find myself distancing from this place. Over the years, I've read 1000s of posts from 100s of members and I’ve cried more times here than any other place on earth. It has nothing to do with MSWorld and everything to do with the understandable pain, fear and anger that MS can cause. I also am aware that MSWorld is a safe-haven to 1000s of people that can come here for knowledge, understanding and support. It’s beautiful when someone arrives afraid, quickly gets reassured and a few days later are already helping others. Unfortunately, some situations are much harder than others and do not have “cut & paste” answers. This is the plight of the primary progressive patients where no medications and little help exist.

Over time, I have come to loosely group people into two groups; those moving towards hope and those moving towards despair. Maybe that’s oversimplifying things too much, but that is my vantage point. Overall I hope to be moving towards hope, but there have been times when despair seemed closer. I know I was moving towards despair when I was losing my job, ability to walk or talk normally. That was a difficult time when things seemed completely out-of-control and I was suffering physical, mentally and spiritually. This is the reason I try to respond to message board questions and post of new therapies. I know how defeated MS can make you feel. I read those posts that claim “MS doesn’t have me” until it does. I know how frustrating, maddening and fearful MS can make you.

I am guilty of often posting about new MS developments or therapies. I scour the Internet, read articles and magazines looking for information that may spark hope. In fact, I just posted about a "promising" new therapy just a few minutes ago. I try not to sell any treatment and have been outspoken against a number of therapies listed as a cure or panacea. I am all too aware there are currently no silver bullets for MS. What I do believe is we often have a choice to move towards hope or despair. It’s where we place our focus. When we focus on our blessings, our hardships are more distant. When we focus on our capabilities our deficits seem smaller. It’s similar to driving where if you look left long enough you will eventually veer in that direction. There are too many things far beyond my control so I need to set them down. There may be a better a drug or even a cure in my lifetime, but I need to focus on living in the moment. Ultimately, I hope my MS diagnosis was the reason I chose to live and not an excuse to stop hoping or trying. Life is a journey and not a destination. God bless you all!

Well you just have a way with words! lol
I agree with you. I mean - my anger of course sometimes gets the best of me and I let out a rant or vent, like I just did a few minutes ago...

For me though, I can be positive in my overall outlook on my life. But I'm not perfect. I do get mad, I do get upset, I do get frustrated, but what person wouldn't? It's normal to me. I feel that if I didn't let out the way I truly feel at times, then I would just leave it all bottled up and then I would explode.

Like you, I also do research on Multiple Sclerosis - and I attend the MS Conferences on behalf of MSWorld's Conference Center... I love being able to stay up-to-date on what's going on in the world of MS. It's nice to see that they are making strides in MS research, but of course it isn't something that can benefit each person living with MS. But at least it's something?

If you look back to the people that were diagnosed 30+ years ago, they had no treatment options. So at least we do have those options. I've failed my fair share of them as well... but I will keep trying. There is not ONE medication that will help EVERY patient with MS. Is that portrayed to the MS community? No. I think that's where a lot of the confusion and anger is created from. Because if something is 'promising' - who is it promising for? Obviously not Progressive forms of MS, unless there was a study completed specially for that stage of MS. But even those with RRMS, like myself.

Next month, I have to check up with my neuro. If my JCV level keeps rising while I'm on Tysabri, I have to get off of it. What are my options after that? Lemtrada... Even with all of the medications now available for those with RRMS. I've failed every 'type' available almost.

Okay - had to get that out there. Love your outlook Marco. You're so strong. I wish all of y'all the best, and know that you aren't alone in this fight/journey. It's okay to be angry. But don't let is consume you.

xoxo

[Ringer1319]

I. Have fortunately never had a Dr promise me anything. I have always been told different things work for different people. I have also been told there are different things to try and different combinations.
good luck
sorry you were given false promises I am not sure why anyone would promise anything
laurie

Laura - My first neuro (who wasn't a specialist) did promise me things. But not in a drug manner. He pretty much scared me to death about my diagnosis, when I was only 22. I've since gotten a new neuro, who is an MS Specialist, and know better.

While I don't want anything promised to me about my future with MS. I think that the statements in this thread is directed more towards research being done, drug advertisements, etc. I think that the word promising is also used, when researchers are trying to communicate that a certain medication in a trial, didn't fail. So it looks promising to move forward in the research. I know this, from personal experience at MS Conferences, so I wanted to share that tidbit as well. I think i've posted enough for now lol. Three in a row... Sorry about that - but I wanted to reply to messages as I read them, so I wouldn't forget what I was going to say.

xoxo

[JerryD]

These replies are exactly the types of responses I was hoping to provoke when I began this thread. I am a little surprised that so few of the 5000+registered MSer's on this site responded. I am grateful for the responses. It is a very healthy thing to let many people get 'air' their feelings as openly as possible. This disease has 'hog tied' too many people for too long. And I am angry that modern medicine has NOT solved the problem that is easily 150 years old. Good luck and peace to you all.
I am off to write something provocative to MS Connections magazine.

[laurasari]

As someone with RRMS for sixteen years now, I have been through four of these promising treatments. Its been rough...MS and the darn drug side effects. All in the name of hope.

Tuesday two docs from Miami are suppose to come to my MS Support Group (which I rarely show up at) to talk about stem cells. I thought...yes I want to hear what they have to say. Then I thought nope...don't care. I am not going...too tired to get dressed to go...not worth some of my spoons.

Katie has given up on MS and I am letting it win the War. I am on my last ever DMD or treatment.

But...for those that are new to this, I say don't give up. For each MS Generation, it does get better. It really does. The young have to keep the hope alive.

Hi Katie Again

I live in Aventura I did not know there was a support group in Miami. can you tell me where it was and I am curious who the Dr was. my Dr is from U of M in Miami.
Thanks for the info
Laurie

[KatieAgain]

Hi Katie Again

I live in Aventura I did not know there was a support group in Miami. can you tell me where it was and I am curious who the Dr was. my Dr is from U of M in Miami.
Thanks for the info
Laurie

I don't live in Miami. I am farther North in Florida. The docs visted my group from a Stem Cell Treatment Center in Miami.

You can Google it, if you want. They treat a whole gamut of diseases with stem cells. I would proceed with extreme caution. If I was to do stem cells...I would look at getting into a trial.

I did not go to the meeting.