Hello Fellow Fighters - I just signed up because I have learned so much from reading the threads. I was diagnosed when I was 26 because of a foot drop that came our of nowhere. My doctor ordered a MRI and I will never forget the results. I was told that there were lesions on my brain that were consistent with MS. I immediately prayed and asked God to protect me from the course of my life changing because of the disease.
I was prescribed a round of prednisone and the symptoms faded. Fast forward over the 32 years since and I have had two optic neuritis attacks, one Bells Palsy like attack whereby the left side of my face was felt convulsed (eye visibly smaller than normal and mouth pulling to one side) occasional numbness in my hands and feet, twice to the extent where my ability to type was slower than normal, and generally a degradation of balance that eliminated wearing stiletto heals with confidence and holding onto a handrail when on steps is my standard safety measure.
I have never had more than prednisone, and that has been on 5-7 occasions over all these years. I have gone for MRIs over the past 10 years roughly ever 2-3 years. The stance of my neurologists in terms of medication has always been the decision was mine with regard to taking medication because I was healthy and living life, freely moving about, working out (no I am not the perfect gym rat who is at the door at 6 AM five days a week) and I did not want to do injections.
I have, however, always taken an array of vitamins. My Dad was an early proponent of the benefits of vitamins and over the years I have always taking a range that included D, E, Biotin, B12, C, Multi, fish oil, flax oil, and some other one offs I thought were cool at the moment. Fast forward to today. I am long married, though we never had children. I recently had an attack that really slowed my normally brisk pace. I was more prone to tripping in my own house. I called the neurologist and was prescribed a three day infusion of solumedrol. This was the first attack of its kind and for me the most alarming because I felt like MS had after 32 years made its presence known in a way that was not so subtle.
Yes I could still walk unaided, but not like my norm. So, my neurologist and I went over my latest MRI and she pointed out two new lesions. I already knew I had non-enhancing lesions on my spine and brain. She no longer wants me to continue on my naturopathic, anti-poison (pharma drugs) path. She wants me to start Aubagio or Gilenya. I value her expertise but I am terrified of the SX of the MS drugs...gaining weight, losing my hair, brain infection. At 58, I know I cannot take 32 years of med free freedom for granted and I do not want to risk going into a drastic decline all of a sudden in my 60s.
Can anyone tell me if they have had a similar journey or their ex with MS drugs? God Bless all and stay strong. If you believe in God, know that He hears and anwwers prayers!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I was prescribed a round of prednisone and the symptoms faded. Fast forward over the 32 years since and I have had two optic neuritis attacks, one Bells Palsy like attack whereby the left side of my face was felt convulsed (eye visibly smaller than normal and mouth pulling to one side) occasional numbness in my hands and feet, twice to the extent where my ability to type was slower than normal, and generally a degradation of balance that eliminated wearing stiletto heals with confidence and holding onto a handrail when on steps is my standard safety measure.
I have never had more than prednisone, and that has been on 5-7 occasions over all these years. I have gone for MRIs over the past 10 years roughly ever 2-3 years. The stance of my neurologists in terms of medication has always been the decision was mine with regard to taking medication because I was healthy and living life, freely moving about, working out (no I am not the perfect gym rat who is at the door at 6 AM five days a week) and I did not want to do injections.
I have, however, always taken an array of vitamins. My Dad was an early proponent of the benefits of vitamins and over the years I have always taking a range that included D, E, Biotin, B12, C, Multi, fish oil, flax oil, and some other one offs I thought were cool at the moment. Fast forward to today. I am long married, though we never had children. I recently had an attack that really slowed my normally brisk pace. I was more prone to tripping in my own house. I called the neurologist and was prescribed a three day infusion of solumedrol. This was the first attack of its kind and for me the most alarming because I felt like MS had after 32 years made its presence known in a way that was not so subtle.
Yes I could still walk unaided, but not like my norm. So, my neurologist and I went over my latest MRI and she pointed out two new lesions. I already knew I had non-enhancing lesions on my spine and brain. She no longer wants me to continue on my naturopathic, anti-poison (pharma drugs) path. She wants me to start Aubagio or Gilenya. I value her expertise but I am terrified of the SX of the MS drugs...gaining weight, losing my hair, brain infection. At 58, I know I cannot take 32 years of med free freedom for granted and I do not want to risk going into a drastic decline all of a sudden in my 60s.
Can anyone tell me if they have had a similar journey or their ex with MS drugs? God Bless all and stay strong. If you believe in God, know that He hears and anwwers prayers!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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