Here are links to known Facebook groups worldwide. These are all private groups and you will need to ask for permission to join.
HSCT is not a miracle, it’s science. The miracle is when people find out about it.
Here is how a typical MS diagnosis goes down:
The neurologist spends the first half of the appointment explaining they don’t know much about the disease. Then they spend the second half stating they’re positive you need to take drugs the rest of your life.
Am I the only one that finds it strange they are so positive about something the admit they know very little about???
Here are a few of the top doctors in the world stopping multiple sclerosis:
Dr. Burt – Immunologist with a certificate in hematology
Dr. Ruiz – Hematologist
Dr. Fedorenko – Hematologist
Notice there is not one neurologist on this list….
Hey, National Multiple Sclerosis Society I’m calling you out, and by the way, that is not a number one I’m holding up under that bag.
Your days of placing the interests of drug companies first are numbered. You mislead and withhold information from the very people you claim you are trying to help, and have tricked your donors and volunteers as well. Changing your slogan from “Finding a cure” to “Living well with MS” doesn’t sit well with those looking for hope.
A major medical journal published overwhelmingly positive results about HSCT, and you simply dismiss it.
This post is not to make you look bad, as you’re doing a great job of doing that yourself, but to issue a challenge for a debate. I’ll bring my people, and you bring yours. I’ll even come to you, just name the time and place.
Full disclosure so you can prepare: I’ll be standing shoulder to shoulder with people that had their MS progression stopped from HSCT.
One condition, it needs to be public.
Let’s have a war of words over some of the information that people with multiple sclerosis have been told by their doctors while you sit idly by with your hand out promoting bike rides and walks all for the benefit of your jobs, and big pharms bottom line.
Here are a few of my favorites lines all said by neurologists:
Will they still charge you when you die?
Too risky and proven not to work.
Your MS is not bad enough.
Your MS is too bad.
And my favorite: We don’t know much about HSCT.
If my kid came home from school with a bad grade on a history test and said it was because they didn’t know much about the material, they would lose their video game system for a month. HSCT has been performed for over thirty years, so why don’t you or the neurologists know much about it? Time to take all of your video games away too.
The Big Pharm machine is using your society to mask their ugly face. You have done zero to educate people about the only known treatment to stop multiple sclerosis. You have gone to great lengths however to promote drugs that people will have to be on for a lifetime. The cost for Hematopoietic stem cell transplantation, if insurance doesn’t pay, is a onetime cost of approximately $60,000. The drugs you push cost that much for a year supply.
From your own website, you recommend that MS activists use the #accesstomeds as an example for us hip digital activists to use. I could think of a million other hashtags to suggest other than pushing for drugs. Could the hashtag #findacure, #tellourpeepsabouthsct, #learnabouthsct have been more suitable?
Consider me your Cousin Eddie. I’m going to keep showing up unannounced, and I’ll be a constant embarrassment to you. Or worse, maybe I’ll be that ex-boyfriend that just happens to keep showing up at the same bars as you even though you the judge issued a restraining order. Either comparison suits me fine.
So, National Multiple Sclerosis Society hit me up. I’m ready when you are.
P.S. If you are one of the local chapters educating people about HSCT, disregard.
I am fairly certain I was a dog in a prior life. Like a dog, I constantly seek praise and need to be told I am a “good boy” every once in a while. I had not received any milk bones or table scraps for that matter from anything that I had written on this blog so I convinced myself that writing a book about our HSCT experience would reach a larger audience and spread the word about the procedure stopping MS dead in its tracks for the majority of the people that undergo the transplant.
So instead of writing on this blog, I focused on rewriting/editing a memoir about Amy’s multiple sclerosis diagnosis and stem cell transplant. Out of curiosity I came back and recently checked my stats for the HSCT.BLOG website and was surprised to see it has been receiving views from all over the world. I decided it was time to reinvest myself in this blog and start reaching out where ever and whenever I had the opportunity.
A young man from Canada reached out to me after he saw a response I had written to Selma Blair on her Instagram post after she announced she was diagnosed with MS. He told me what I had written was great and after we chatted several times he told me he signed up to have HSCT in Mexico in April.
So this old dog got his bone.
Selma Blair, @selmablair announced that she has multiple sclerosis. The first thing I did was shoot her a message on Instagram in hopes she will take some time and research HSCT.
For those of us that have experienced the fear of MS, and the hope that HSCT brings it is hard not to try to get a celebrity like Selma to bring some attention to the life-changing procedure. I mentioned my blog on her Instagram page and have received a ton of visitors. I suspect people with a connection to MS are coming out of the woods to support her. I am one of them.
I am curious how many of those Selma supporters have heard of the procedure, and how many will have their American doctors tell them not to do it.
We have a long way to go. Maybe Selma will give it a look. Maybe Selma will have the procedure. Maybe Selma can change the way doctors treat multiple sclerosis in this country.
As we neared Amy’s official diagnosis date, I went from thinking she was dying of something horrible to being relieved she had multiple sclerosis to dreading that is what she had. If someone were to ask me about how the diagnosis process went, I would tell them “it was horrible”. We went from not knowing anything to being told it was MS, then being told it was NOT MS to finally being told it was Clinically Isolated Syndrome (CIS, which is the 1st stage of the disease progression). It was a relief, but only temporarily.
Seeking a common bond, I immediately reached out to someone I knew with the disease and she shared her story with me. It took the doctors twenty years to diagnose her, and at times she thought she was losing her mind and was dreaming up the symptoms MS causes. Turns out, we did not have it bad at all.
A friend of mine who is a doctor later told me I could have got the MRI that would have sped Amy’s diagnosis significantly for $300 cash. The trick is to tell the imaging center you do not have insurance. If only I would have known that sooner I would not have had to haul Amy to the ER for that scan.
In the end, it took our insurance company three months to approve paying for the scan her doctor ordered. We had Amy’s illness diagnosed via an unconventional route faster than insurance could approve the normal method.
Do not let insurance companies dictate the speed of your diagnosis.