Brief of my MS Story

by Liz
(OK)

I was diagnosed with RRMS in May of 2003. The first symptoms of having it were in February 2003, and they were pretty quick to diagnose me. My first symptoms were tremors, dizziness, and fatigue.

My handwriting became awful with tremors. I also had what felt like little lightening pulses running down the back of my head into my neck. I always know when I am getting overheated, when they start up again. After having several physical tests, CAT scans, a MRI, and a lumbar spine test with no real diagnosis, the doctors settled with the diagnosis of RRMS.

I recovered from that one flare after a couple of months. I started on Copaxone, but stopped taking it after the flare was over. With encouragement from my husband, I began watching what I ate and tried a lot of holistic methods of recovery. After awhile, I started disbelieving that I had MS. Life was good. Luckily, things were calm for my MS until 2009.

In October of 2008, my family and I went on a small vacation. My MS timing isn’t always the best. I started having another flare. I was on a hike with my family, and collapsed. My left leg started dragging as if it couldn’t be lifted. I had to stop after only a few steps. I grew very weak. My husband carried me back to the car, and dumped a cup of ice water over my head to cool me off, knowing that the heat and humidity were working overdrive on me. Needless to say, vacation was cut short.

I got a new neurologist closer to home, and started on Rebif. She wanted an MRI, and through the next year I had several. It was the first time that Dawson's fingers were spotted on the MRI. I was progressing rapidly with dizziness, forgetfulness, and mental incompetence. Tremors were very fleeting. The physical symptoms were minimal though....it was almost invisible, just that I was scatterbrained.

I can remember over one weekend in January 2010, I took a three day prednisolone drip at the ER. Neurologist stated that this would stop the flare. It didn't. The Rebif didn't seem to be helping either. I felt horrible, feeling my body and mind slipping away. One afternoon though, my husband mentioned reading something about a drug for MS called LDN.

I started doing as much research as I could on it, and printed out the information for my doctor. My next visit, I gave them to her asking for a prescription. I was completely amazed when she agreed. I had my first prescription for 3 mg LDN, which I took to my local pharmacist. I had stopped taking the Rebif after reading that LDN and the Rebif didn’t work together. Wasn’t so bad, the Rebif wasn’t working anyway.

At first, it was amazing! All of the issues were being resolved. After a couple of months however, it seemed to stop working. The dizziness returned. Things were declining once again. I knew this shouldn't be right. Again, I started the research to find the solution.

I realized that many people were having issues with LDN after reading through a few forums. These people, I found, were not using a "LDN suggested" pharmacy. At that time, I asked my doctor to switch my prescription over to a well known LDN pharmacy. Things have been much better since. The quality of my life is back.

After fearing that my neurologist might not refill my prescription again for another year, I started looking at alternative means of getting LDN. I don’t really like the self mixing it with water method. Just a personal thing, but I never had much luck with it.

I also found the website that sells the LDN without a prescription that is listed here: https://www.life-in-spite-of-ms.com/lowdosenaltrexone.html. I have ordered it from them. Product seems to be good. Really couldn’t see any difference between that and the one that I was getting with a prescription. Price is a little more, but if it works it is worth it!