May 2018 Update

Posted by:

May has come and it has been a very busy month so far.
I have received, filled out and returned my update to Clinica Ruiz. I am of the hope, others continue to do the same. I realize the importance of responding to their request for information. Since they have started accepting International Patients, their only way of keeping up with the progress of the patients, is to have them respond to the requests they send out. I wanted to start is months update with this “Calling all patients” request. It takes maybe five minutes to complete the survey, yet it is indescribably important to Clinica Ruiz. They need that information to correctly update the data. That having been said, I will move on.
As I have stated in the past, the HSCT procedure was an overwhelming success. By that I mean, there has been no new lesions, nor degenerative affects. I consider myself fortunate. A lot of my fellow HSCT’ers have seen major improvements. I, on the other hand, have not seen those improvements. There is a major reason for this. My type of Multiple Sclerosis Primary Progressive is a very aggressive type. Unlike Relapsing Remitting MS, the Neurological damage is not reversible. I have had to learn to make allowances for this. I also realize, without the procedure, it would be hard to say how far this young man would have succumbed to the degenerative affects of this dangerous Autoimmune Disease.
I am nothing, if not appreciative to have had the opportunity. My procedure was performed on December of 2015. I have been doing Physical Therapy and trying to get my weight up since then. I no longer have to take any of the Disease Modifying Drugs (DMD’s). These medications are in no way a halting the disease. They are Big Pharma’s way of dragging people along. They advertise the drugs. The lobby the drugs. Somehow, they are even able to expedite the FDA approval.
My point is, none of these drugs do anything but retard the progression. Ocrevus, the newest drug and the first DMD touting the ability to act on PPMS. Once again, to retard the progression, not halt it. Neurologists get their kickbacks “Pushing” these drugs and denying the Life Saving HSCT procedure. It is all about Money. Unlike the HIPPACRATIC OATH, most doctors take when they get their license.
There has to be a way for the Autoimmune Disease community to actually have a voice in reference to a known procedure that immediately sends things into remission. It’s funny the way DMD’s can be approved in short order, but the medical procedure, known to work, is taking years and years in the U.S. It is still being considered experimental and the Neurologists refuse to mention it, but is performed often in Mexico, Russia and Germany, to name a few. I am just philosophizing now. Nonetheless,
May, has been a very eventful month, so far. Birthday’s, Mother’s Day; and on the other side Tooth Issues and being a part of a village to raise children. All of these, except the tooth, I actually consider it a blessing to be a part of helping to mentor children. Discussing with the parents what works and what doesn’t. Ways to Modify their approach, that might work better.

2

About the Author:

A little about myself: I was born Carl Levon Jones in Conway hospital in 1959 to Hazel Elizabeth Jones. I am the third of four children. My mother never married. This today would be normal but in the old days, it was different. Maybe it was the beginning of the change in view. I was raised by my grandparents from the age of 1 when we moved to Maryland. My mother was still a big part of my life, as she and a few sisters had moved to New York to try to make a living instead of the depressed south. I lived and grew up with my grandparents, brother and sister and cousins until I entered the military at 19 years of age. I spent 12 years in the Army learning to be an electronics technician, just to have computers take over the industry. I, therefore, had to relearn electronics with computers being the main focus. No, I am not talking Windows and Microsoft, but Fortran and different flavors of UNIX creating GUIs. I rose through the IT Field from the bottom, to be a Manager at different DOD Contractors. I was married to my wife, Patt in 1981. We have been together ever since, 38yrs. We had one son, Carl Levon Jones II the following year while still serving in the military. I am a man who believes strongly in family and relatives. I am as close to Patt’s family as I am to my own. Closer in some cases. Unfortunately, my rise in IT was interrupted when I contracted the Autoimmune Disease, Multiple Sclerosis in 2012, diagnosed in 2013. I had to leave work in late 2014. I have been dealing with the nerve damage(Neurological) the disease caused. I went to Clinica Ruiz in Puebla, Mexico for a procedure called Hematopoietic Stem Cell Transplantation (HSCT). It is not offered for my type of MS PPMS in the United States. A battle we have been fighting for some time now. This Blog is about my; MS Journey, my thoughts (Poetry) throughout the years, my experiences and my friends and family (Photo Gallery). Hopefully, this Blog will help at least one person in their decision to conquer the MS Beast, and help to get this procedure available in the United States and covered by the Insurance we pay so much for.
  Related Posts
  • No related posts found.

Comments

  1. web cost  October 5, 2020

    Thanks for one’s marvelous posting! I definitely enjoyed reading it, you arre a great author.
    I will be sure to bookmark your blog and will eventually come back in the
    future. I want to encourage one to continue your
    reat work, have a nice weekend!

    reply
  2. diziler  February 16, 2021

    Nice read, I just passed this onto a colleague who was doing some research on that. And he just bought me lunch as I found it for him smile Thus let me rephrase that: Thanks for lunch! Kamilah Westleigh Rheinlander

    reply

Add a Comment