Ampyra and my PPMS journey…….
My name is Ed ( aka – undisclosEd ), I am 65 years old, retired, and I was diagnosed with ppms on Aug. 14, 2014. My journey started on May 28, 2014 with my 1st visit to my PCP to follow up on my 1st trip ever to an Emergency Room on Mar. 23, 2014 and diagnosis of high blood pressure. I had fainted at church, the local fire department and EMT’s were called, and they determined that I needed to go to the ER immediately. Prior to that day, I had not seen a doctor for any reason over the past 40 years, partially because I’m one of those guys that believed that doctors only make money if they find something wrong with you, requiring many return visits, and also because for the past 10 years I did not have health insurance. I knew at that time that I had high blood pressure, but I was was waiting and praying that nothing would happen until after May 1st when my Medicare would finally kick in and I could then get it dealt with. As you can see by the dates above, that didn’t quite happen.
At the end of that 1st visit with my PCP that day, he asked if there was anything else going on that we needed to discuss. I said yes, I can’t walk !! He said I noticed that you were using a walking stick, how long has that been going on ? I said that it had been getting progressively worse over the past 18 months. I had a bum left leg, he tested a few reflexes, and determined that I had drop foot. From there he ordered X-rays and a MRI ( my 1st ever ) of my lower spine, and referred me to a back specialist. Met with the back specialist to review everything on June 26, 2014 and was informed that it was not anything going on in my back that was causing the drop foot and walking problems, in fact, he hoped that his back looked this good when he reached the age of 65. The back doctor referred me to a Neurologist.
My 1st visit with the Neurologist was on July 23, 2014. She reviewed everything and ordered MRI’s of the cervical spine and the brain. Oh Boy !!
Met with the Neurologist again on Aug. 4, 2014 to review the new MRI’s. At that time she stated that she was pretty sure that it was MS, and she ordered yet another set of MRI’s with contrast, and also a spinal tap ( which turned out to be totally painless, but kept me awake with anxiety for weeks prior ). Double Oh Boy !!
Met with Neurologist on Aug. 14th, 2014 to review new MRI’s and spinal tap results and was informed that I had PPMS. At that time I asked about Ampyra, which she agreed would be a good thing to try for the walking problem. She also started me on 30mg of Baclofen oral that day. I had since discovered that she has over 100 MS patients, and as I look back over this series of events I thank God and see how I was blessed through it all. I had to do more blood tests and an EEG to get the Ampyra approved, and all of that was completed on Aug. 27, 2014, and submitted to Ampyra on Sep. 3, 2014.
Now came my next big hurdle, Medicare does not cover Ampyra. It was going to cost us over $500.00 per month for a 30 day supply, and there was no way that was going to happen. So, we applied for their financial assistance program, which was approved by them on Sep. 24, 2014. On Sep. 30, 2014 I received my 1st 30 day supply of Ampyra, FOR FREE !! They will continue this free program though the end of 2014, at which time I will have to re-qualify for 2015. The only reason I have to re-qualify is in case Medicare changes their drug policies regarding Ampyra, which is not likely to happen.
I started taking Ampyra on Oct. 2, 2014. As I write this today, Oct. 17, 2014 I am thrilled to report that I noticed an improvement in my walking and balance by the end of the 2nd day. It was virtually almost immediate, and has continued. I am taking 10mg every 12 hours ( 7 am & 7pm ) as prescribed. I will say that I can feel it starting to wear off before the evening dose, but that seems to be improving a little bit too day by day. Before the Ampyra I was a wall leaning, chair or counter seeking, walking stick hugging klutz. I consider Ampyra to be a miracle drug.
Moving forward, after all the research, reading, Googling ( dangerous thing to do ), and personal stories that I have read regarding this thing we call MS, I guess I feel blessed that my journey from zero to diagnosis was only 8 months, and that my only symptoms for now are walking, balance, and fatigue related issues. I will continue updating how things are going with the Ampyra, and I welcome the opportunity to help and share information with anyone that I can in regards to my particular PPMS symptoms and Ampyra.
In closing, my research and reading over these past 8 months has also convinced me beyond a shadow of a doubt that;
MS really stands for Multiple Symptoms !!