Selma Blair

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.

The Speed of Diagnosis

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.

The Vaccine/MS Connection

When my wife was diagnosed CIS (Clinically Isolated Syndrom) which is a first course of the MS disease progression, I was bound and determined to discover what caused, or what was causing this disease to attack her.

One of the first things I discovered was that the disease was more likely to occur in women. The further a person lives from the equator would also raise the chances of MS significantly.  According to http://www.healthline.com: “Above the thirty-seventh parallel there are between 110 and 140 cases per 100,000 people, and below the thirty-seventh parallel there are between 57 and 78 cases per 100,000 people, that is nearly double the cases of MS in the northern half of the United States.”

 

map-37th-parallel_orig

Image from Harvard Health

My wife fit the stats, a female that grew up above the thirty-seventh parallel. What troubled me though, as there are a lot of females that lived above the 37th parallel that do not have MS.

The anti-vaccine movement has been gaining a lot of traction, and the topic is very divisive. I found research and discussions that claim that vaccines may MS. One of the issues is that type of research is difficult to fund.

I do not dispute the importance of vaccines, or their effectiveness. I do believe what the pro-vaccine people do not acknowledge is the additives in the vaccines that could possibly be causing auto-immune diseases such as MS.

This information straight from the Center for Disease Control (CDC) website was enough to cement my own decision of not to be vaccinated again.

“Some vaccines made from weakened or dead germs contain naturally occurring adjuvants and help the body produce a strong protective immune response.”

What exactly is an adjuvant? The CDC continues: “Aluminum gels or aluminum salts are vaccine ingredients that have been used in vaccines since the 1930s.  Small amounts of aluminum are added to help the body build stronger immunity against the germ in the vaccine. Aluminum is one of the most common metals found in nature and is present in air, food, and water. The amount of aluminum present in vaccines is low and is regulated by the U.S. Food and Drug Administration (FDA).”

This is the same FDA that says these eleven things on this website are just fine: https://www.cbsnews.com/pictures/11-revolting-things-government-lets-in-your-food/

I see a future where big pharma influence is removed from the FDA’s decision-making process and the people’s health interests will be placed before jobs and money.

Until next time,

Jay T. Blankenfeld

CDC Source: https://www.cdc.gov/vaccinesafety/concerns/adjuvants.html

Multiple Sclerosis may cause heat intolerance

Our doctors did not tell us about this treatment.

I used to think my wife was tired of hanging out with me when she always needed to go in the house on days when it was somewhat hot out. “You know we are living in the wrong state if you can’t handle this heat” I used to tell her.

About ten months ago, as I was attempting to diagnose the cause of her blindness I stumbled across several articles citing that heat intolerance is a very common occurrence with people with multiple sclerosis.

Since Amy’s treatment she has spent at least an hour or two in the sun everyday without issue. Although it is only the end of April and my Midwest and Northern friends may find it hard to imagine, but we have had some hot days already.

Stem Cell Transplantation has the highest success rate for those early in the disease progression. Our doctors did not tell us about this treatment. It took Facebook and blogs like this to get educated. #payitforward

Multiple Sclerosis may cause heat intolerance

Our doctors did not tell us about this treatment.

I used to think my wife was tired of hanging out with me when she always needed to go in the house on days when it was somewhat hot out. “You know we are living in the wrong state if you can’t handle this heat” I used to tell her.

About ten months ago, as I was attempting to diagnose the cause of her blindness I stumbled across several articles citing that heat intolerance is a very common occurrence with people with multiple sclerosis.

Since Amy’s treatment she has spent at least an hour or two in the sun everyday without issue. Although it is only the end of April and my Midwest and Northern friends may find it hard to imagine, but we have had some hot days already.

Stem Cell Transplantation has the highest success rate for those early in the disease progression. Our doctors did not tell us about this treatment. It took Facebook and blogs like this to get educated. #payitforward

International Trial Results

Doctors on Sunday hailed what they say is a major breakthrough in the treatment of multiple sclerosis, halting progress of the disease and relieving symptoms in some patients.

My wife was in Mexico over half way through her HSCT treatment when the results of an international trial on stem cell transplant treatment was released. After reading the results of the study, one of her Mexican doctors said to her “now you can say that you had stem cell therapy before it was cool”.  I must add he said this in perfect English.

After reading about the results of the study via the link below, I knew the news was big. According to the study,  stem cell transplantation had a failure rate of 6% versus a 60% failure rate when given the drug treatment.

https://www.telegraph.co.uk/science/2018/03/19/stem-cell-treatment-offers-new-hope-multiple-sclerosis-patients/

The Journey Begins

Welcome to the HSCT for MS & other Autoimmune Diseases Blog. If you want to learn more about this medical procedure you came to the right place. My wife was diagnosed with Multiple Sclerosis (MS) in June of 2017 and had the procedure in March of 2018 in Mexico.

I created this blog because I wanted another source for those out there that may have been recently diagnosed, or know someone that has. Our doctor did not tell my wife about this procedure, and I have discovered this is quite common. There are also doctors that will tell their patients not to go through with the procedure. This is also quite normal especially with neurologists, so do not fear.

Hematopoietic stem cell transplantation (HSCT) is a stem cell therapy where the stem cells are extracted from the body, the immune is killed with chemotherapy and then the stem cells are put back into the body so the immune system can be rebuild.  This has been found to stop the disease progression. In other even simpler words, the doctor presses Ctl-Alt-Delete and the immune system is reset.

This blog will coincide with my HSCT for MS Podcast. I will be interviewing people that have gone through with the procedure so listeners can hear first hand experiences of why they decided on HSCT, and where they went to have it done.

Thank you for your interest.

Good company in a journey makes the way seem shorter. — Izaak Walton