Crystal's MS,Transverse Myelitis and LDN Website

Hi, my name is Crystal; I am a 40 year old mother of 3 wonderful children. On November of 2004 I was diagnosed with Secondary Progressive Multiple Sclerosis and Transverse Myelitis.

In the months before my diagnosis, I started feeling extremely tired all the time and when I got home from work I would have to lay down and take a nap which was unusual for me. I have read in some of the MS documentations that the tiredness is one of the first signs of MS. I then started having a lot of back pain and then went numb from my feet up to my chest and could barely walk.

I visited our family doctor and after explaining to him what was wrong he only asked for an x-ray and checked my lower back and of course he found nothing.  So he quickly dismissed my symptoms to stress and too much physical activity.  After months of this constant numbness and pain, I decided to go to a Chiropractor because I thought it was a pinched nerve.  So I went and he did some x-rays and an MRI. The next day that doctor asked me to come in right away. That 10 minute drive to his office was the longest drive filled with fear and anxiety. When I arrived for my results he told me he could not examine my back or carry out any procedures on my back because there is a mass in my spinal cord from the lumber region to my shoulder blades but he could not tell me if it was a tumor or just a mass and he had made an appointment with a Neurologist for the next day. These hours before the appointment with the Neurologist were the longest that I had to endure at home wondering what was in store for me.

The next morning at the Neurologist, I explained what symptoms I was having. He did some more tests in his office, and asked for another MRI with and without contrast (important to diagnose MS) and admitted me to the hospital to do a Lumbar Puncture. By this time it was Thanksgiving weekend. He ordered three days of Steroids through IV in the hospital and another week at home. A week later, this was the longest week of my life, my Neurologist called and asked me to come in.  Before he gave me the news, he explained that after reviewing the symptoms I had complained about and reviewing my medical records, he knew I had the MS before he got the results of the Lumbar puncture and that MS had been present at other points in my life, but he needed the Lumbar puncture results for confirmation.

When he told me it was like I was in a bad dream and it hit me like a brick wall. It was like my mind was numb and I didn’t want to believe what I was hearing. I was so devastated and all I thought was that I would end up being a cripple the rest of my life and would have to depend on others to take care of me. I was scared to death!!!

My Neurologist started my treatment right away, which is essential in treating MS. He prescribed Betaseron injections, a medication for MS which helps slow down the progression of MS. I was on the Betaseron for the first 8 months after I was diagnosed but it wasn’t helping me at all. I ended up getting a bad infection in my right upper thigh from the injections called Cellulitis. I was bedridden for 3 months because of it the summer of 2005 and had to have surgery to drain all the fluid. It was the most painful thing I have ever felt in my whole life.

After this I did a lot of research online and found out about another medication that other MS people were using and it was helping them a lot and I talked to them and got all the information I could about it. The medication is called LDN (Low Dose Naltrexone) and it is a capsule you take every night between 9pm and 3am. I went to my Neurologist and asked him about it but he had never heard of it because it is still in studies and not totally approved yet. I had printed a bunch of information about it and gave it to him and he said he would read through it and get back to me in a couple days. A couple days later he called me and said it looked good and we could give it a try if I still wanted to so I said yes and he called it in. The LDN has helped me more since I started taking it September 3^rd, 2005. It does take a full 2 months to get the full effect from the LDN but I started feeling effects from it the very first day. If you want more information I have a LDN Research page, an LDN Information links page and an LDN Welcome Package page with lots of information links and how to talk to your Dr about prescibing it to you.

People that don’t have MS, Transverse Myelitis or any other disease can not say they understand or know what you are going through unless they have the same thing and even with MS it’s different for everyone of us. None of us have the same symptoms. And even though there are four stages of MS, those of us with MS do not suffer or progress at the same rate as others at the same level.  With MS you may have two people, same age, physical shape and condition, living in the same town and eating the same foods, suffer differently.  And because this is a Neurological disorder, there is no sign of being ill on the surface, so others who do not understand what MS is, think there is nothing wrong.

At this time there is no cure for either MS or Transverse Myelitis, but hopefully one day there will be a cure and more people will donate to the MS Organizations and Transverse Myelitis Organizations to help find a cure.  There are links on my pages if you want to help. As I stated on my first page, there have been recent studies where doctors have found MS in children as young as age three.  This is a very devastating illness for an adult; imagine how devastating it is for a child who has just begun his journey through life.

After I was diagnosed with the MS and TM I thought back to thing’s that have happened to me in the past that I can link to having this years ago and everytime I was always misdiagnosed with something else or the Dr’s would tell me it was all in my head. Believe me now I wish it had all been in my head. 

Thank You All For All Your Love, Support, Prayers and Thoughts!!!!!

You All Mean the World to Me!!!!!!!!!