Is it too good to be true?
What on earth am I talking about this time? Well, I want to touch base about the things that you might see being promoted in regards to Multiple Sclerosis.
As we all know, there is no FDA approved ‘Cure’ for Multiple Sclerosis available, anywhere. A big topic that has been spoken about this past year is Stem Cell Research for MS. There have been many clinical trials in regards to Stem Cell Treatment and Multiple Sclerosis. And most of you may know, it takes time and a lot of research to complete clinical trials, as they have different ‘phases’ they must complete, in order to apply for FDA approval in the future.
But what I’m talking about is when you hear things from others, or see things on the Internet, about a miracle treatment to help manage multiple sclerosis. What I tell people about this, is that if it sounds too good to be true, it probably is.
I’m not trying to be a “Debbie Downer” about these things, but I’ve seen and heard about so many people who paid A LOT of money for these certain procedures, medications, etc. with no miracle outcome accomplished.
We discuss the risks and benefits of certain medications available for those with Multiple Sclerosis right now. How sometimes, the risks are greater than the benefits, and we shy away from certain things.
Unfortunately, there are cruel people in the world that take advantage of those who suffer daily from a disease, and they see a way to make money by giving these people false hope. Well if you are one of these disgraceful human beings, shame on you.
While stem cell treatment in MS is showing positive results in the Multiple Sclerosis field, that doesn’t mean that it is ALL positive - there are risks. How do we know that people offering to give us stem cell treatment in whatever country, will take our medical history to heart? How do we know that there are no side effects with the treatment and the medications we are currently taking?
Do I personally believe there is a Cure out there for Multiple Sclerosis? Absolutely! Do I think it has been FOUND and scientifically proven yet? No. I know that’s harsh, but it’s the truth. I know that there are many MS patients who are tired of there not being anything beneficial for them to control their MS, mainly those with a progressive form of MS. But keep in mind, that there is research being done.
Did you know that you could find the clinical trials being done in the US in regards to Multiple Sclerosis by searching it at clinicaltrials.gov? If you haven’t looked into things there, I encourage you to do so.
Now, out of all the things I’ve seen and heard being promoted that “Cure MS”, I haven’t found one to be completely true. Are there certain methods, treatments, diets, etc. that seem to help manage the progression of Multiple Sclerosis? Yes. While they have not been clinically approved yet, they are researching this, and I’ve talked to MANY people who have had positive outcomes with using these certain methods. BUT let me remind you… to me, a CURE for Multiple Sclerosis isn’t just STOPPING any future progression from happening, but also undoing the damage that has been done to our Central Nervous System already, by Multiple Sclerosis.
For all of those people who ask for money, for a cure… shouldn’t you be looking for a cause as well? What is your definition of a cure that you want us to fund? Don’t we pay enough already as it is, with our bodies, along with treatments?
You may have already read my article, “Calling Y’all Out” – and I have not had one response to those who have claimed to have a Cure for Multiple Sclerosis. And remember, in order to claim to have a Cure for Multiple Sclerosis, I mean I want scientific proof, of a large number of widely spread patients. Because we’re all different in regards to MS, we all take to treatment options differently. We’re like snowflakes, no two are the exact same.
To be blunt, when it comes to where we are in MS research, I want the cold hard truth. I don’t want things sugar-coated. I don’t want to be given false hope. I want the truth… and that shouldn’t be too much to ask for.
All of us living with Multiple Sclerosis, either a patient and/or caregiver, need to come together and “Break the Silence”. We can’t work against each other and argue about what works and what doesn’t, because it’s different for each and every one of us. But we need to unite, and let researchers, companies, etc. all know what we have to say.
I’m only one voice, along with many other advocates and writers. But if we all work together with the same mission in mind, we can accomplish a lot. We don’t have to accept what we are told and sit around and wait. We can get up and DO something about it.
Not just for expressing what we want accomplished in MS research, but what we want from companies, organizations, etc. We are the audience, we are the consumers, so our thoughts and opinion should be the voice they listen to the most.
Okay, that’s enough from me today. Didn’t mean to go off on a rant, but sometimes, it’s needed. I wish everyone the best and thank you so much for taking the time to read what I put my heart and soul into.
(P.S. Something that really touched me and made me want to speak up and really get everyone to ‘Break the Silence’, was a video made by my mentor, Kathleen Wilson, Founding President and CEO of MSWorld. Take a look at her short film, “Blu Sky.” She also made an “extra” to follow up with her short film. Watch it here.)
How do you feel before getting an MRI done?