Where did it start…. Truly, I have no idea. I know that I have had my fair share of stress in my life so to pinpoint the exact time I had my first MS symptom is virtually impossible. I can start when I was diagnosed. Most people. You talk to tell you it takes years for Multiple Sclerosis diagnosis. For me, not so much. To me it was a shock.
In June 2013, I lost hearing in my right ear for some weeks. I was given steroids by an urgent care who attributed this to an inner ear infection of some kind. A week later, I went to my loved ENT who said although my hearing test showed a definite decrease in hearing, my ear looked fine. He sent me for an MRI. That MRI showed multiple lesions in line with demyelinating disease. He referred me to A Neurologist who specializes in MS. I expected months of testing or other diagnosis, but by the end of the appointment, I was diagnosed with RRMS. I began my first injectable drug Copaxone within 2 weeks.
Very shortly after beginning copaxone I had a flare of optic neuritis which caused severe pain in my left eye and the loss of nearly all my vision. I started IV steroid treatment for this. I continued the Copaxone and in September of 2013 had another episode of ON. I went on IV steroid treatment again and within 6 weeks had a 3rd. At this point, the doctor suggested that I begin IV infusions of IVIG with the copaxone for 6 months hoping that would keep things at bay. I continued this treatment until May of this year.
After my MRI in June, My doctor and I discussed the copaxone/IVIG and decided to switch to Betaseron. I was on that from May until September at which time my blood results came back with elevated liver and kidney function. I went off the medication and had blood test done 2 weeks later. This showed that they were back to normal and I began Tecfidera. This is a fairly new oral drug that my body, could not tolerate. An ER visit, some morphine and a few miserable weeks passed before that medication was no longer an option for me.
All was not lost, because at the doctors appointment in September. We discussed a trial that is occurring in Chicago. It is in its 3rd level and the results have been amazing. The doctor in charge of this study was also it’s pioneer. He has done thousands of stem cell transplants and the ones he has done for autoimmune disease have shown remarkable results. My neurologist gave me the doctors information and I sent in a letter asking to be considered. Friday, I received word that they would like to see me in person for an evaluation to see if I qualify for the study. My father quickly ran all over town gathering medical records and CDs of MRIs and we fexexed it to Chicago. I now wait for my appointment.
The first and most important hurdle is to qualify for the study. This is where the prayers are needed. If I qualify, I will go for further testing and then I will be randomly placed on one of two legs of the trial:
Stem Cell Replacement leg -this is what we want. It is hard. It will involve chemo and long hospital stays, but I want it. I want my life back.
Control Arm – this leg is still good. I will be sent home to my amazing neurologist who will monitor me on the medications available to me as part of the study. Every 6 months to a year I would go back to Chicago and get evaluated. If I progress, I am switched to the stem cell leg. So this is still a great option.
So here is my very edited MS history until today. We now wait to hear from Chicago to see when I can go. I pray to God it is soon and brings us the answers to our prayers.
Colleen – my MS insomnia is nearly passed and I will hopefully see sleep soon.