Still A Learning Process
I was diagnosed in 2006 at 52 years old. I was having problems and admitted to hospital with stroke symptoms, but all the test were coming back as not enough evidence to suggest MS until I woke up one day with Optic Neuritis. My eye exam still wasn't enough to say it was MS so my neurologist said he wanted to do a spinal tap to rule out MS. His gut feeling was I didn't have MS!
Well the results were YES I did have MS. They sent me home with 4 bags, each one containing a therapy (shot) which I could pick which one I wanted to try. My first pick was Rebif. After about a year on it I was still having to many symptoms so doctor suggested I switch and try Tysabri. What a nightmare! This drug put me in a major flareup as I call it for six months. So we decided on taking Copoxane since it was the only drug not called a interferon. I was on this drug for about 6 years. At this time pill forms were coming out to treat MS. Copoxane was working for me except the damage it was making to my skin was causing me to not have anywhere to take the daily shot even switching to the new three times a week shot didn't help. This year I decided to switch to a pill form. We discussed and decided on Gilenya. I stopped taking Copoxane and it took about 3 weeks to start Gilenya because you have to be tested before starting this therapy. I started Gilenya and with in two weeks of being on Gilenya my hair started falling out in handfulls it seemed like. I have very thin hair and I was loosing what little I had. I have heard that going off a major drug could cause hair loss so I really don't know if it was going off Copoxane or starting Gilenya that triggered the hair loss but it happened!
At this time I told my neurologist that I was not going back on any medicine until my hair came back. I have been off all MS meds since June. I have always said that food plays a big part in how I felt especially with my MS. I have had stomach issues throughout my life. So I started researching. When I didn't eat gluten I felt better, same with dairy. I was switching back and forth with eating healthy and eating bad for years until I went off my meds. I have been GF since June but some of the foods I was eating still caused my left leg to have the wonderful electrical current go thru my leg along with my feet and lower legs feeling like I had put them in hot coals, so I knew I was still eating something wrong. I found an ariticle on Paleo describing Legumes was something you should not be eating and I was eating alot because I thought they were a healthy food. I immediately stopped eating and my legs got better. I will conclude by saying this is still a learning process for me. Everyday I learn something different. MS never lets you forget you have it no matter how good you are feeling. Food does play a big part in controlling MS and I will continue eating GF forever! Good luck to all of you struggling with this disease!
How many specialists did you see before finding "The One"?