So it’s been a while since we’ve had a guest here on IWWB. In case you’re new or just as a refresher, I like to share the spotlight with others dealing with chronic illness in one way or another in a segment called Pass the Mic. Believe it or not, a lot of are people are shy about sharing their stories so it’s difficult to get guests as often as I’d like. But thankfully there are some who feel compelled. So we’re back with another Pass The Mic Interview. This time we have Nicole who has graciously shared her Myasthenia Gravis (MG) journey with us. Check out her interview below.
What’s your name and where are you from?
Nicole (Cobb)Brown I live in Lancaster SC a smaller town about an hour south of Charlotte NC. I’m originally from Long island, NY
How old were you when you were diagnosed? What events led up to the diagnosis?
I was officially diagnosed with Myasthenia Gravis (MG) in 1998. I had been having symptoms for at least a year prior. My initial symptom was blurred/double vision. As it progressed I started to experience limb weakness, slurred speach, difficulty chewing and swallowing and eventually problems breathing. I had been misdiagnosed a few times along the way.
Strangely enough it was an E.N.T I went to with complaints about soda going through my nose when I drank it that finally caught on to the possibility that I might have MG. As I explained my overall symptoms to him he figured it out. He took me down the hall to a neurologist who unfortunately hadn’t had experience with MG. He did some reading up on MG while I sat there and was able to diagnose me with the use of the tesilon test.
He gave me perscription for Mestinon and Prednisone. I felt so relieved to finally have a correct diagnosis. I remember leaving the office thinking ” finally, I can take this medicine and get back to normal”. Boy was I wrong about that. The medicine did help some but I would never be “normal” again. And to complicate things not long after I became pregnant.
What has your treatment plan been? Which medications have you had the most success with?
I’ve tried many treatments and medications over the years. I’ve been on Mestinon, Prednisone, Cellcept Imuran, IVIG and plasmapharisees. I believe the removal of my thymus gland was key to my stabilization. After the thymectomy things got a lot better with just the Mestinon and Prednisone. However, I’ve recently started Soliris with the hopes of being able to completely getting off of Prednisone. The long term use of steroids has really wreacked havoc on my body. Fortunately the Soliris did the trick I’m no longer on Prednisone.
Are you in remission? If so how long?
Yes, I consider myself to be in remission. I have a new “normal” but it’s been ten years since I’ve gone in to crisis or been bad enough that I needed to be hospitalized. I also haven’t needed IVIG or plasmapharisees.
Besides the symptoms, what’s the most difficult part of having MG for you?
For me the pyshcological affects it’s had has been the most difficult part besides the actual symptoms. Early on I went through a rampant of emotions. Having a cronic illness is hard. Early on I experienced depression, anger, grief, guilt and isolation.
It’s better now. I don’t experience those feelings anywhere nearly as often I did then but there are still times I grieve the old me. Or get angry about needing to ask for help for something that I wouldn’t have had to even think twice about doing before. Or times I feel guilty about the impact my illness has on my loved ones.
What’s the biggest impact MG has had on your life? Have you had to make any changes to your everyday life?
MG affects the strength in my hands and arms the most. I have limited strength/use of my hands. Because of that I have lost some of the independence I had. I’m not able to do alot of the things I once enjoyed like doing, hair, bowling, writing or many simple things people take for granted. I’ve definitely had to adjust and learn to do things differently but there are some things I just can’t do or need assistance with.
Who or what has helped you the most in coping with your diagnosis?
I’ve been fortunate that my family has always been very supportive and understanding and that has been extremely helpful. However, I’d have to say that my faith is what really helped me to actually cope and come to grips with the diagnosis and how my life has been impacted.
What goals have you been able to accomplish in spite of your MG? What’s next for you? Aspirations/Goals etc
I was able to go to college and receive my bachelor’s degree in business administration. That was important to me because I wanted my daughter to see and believe that if I could do it with my limitations she could definitely do it too.
I’m not sure exactly what is next for me. I would like to own my own business.
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed with MG?
My advice would be firstly to do your homework find a good neurologist and medical team that has experience with MG. Your life and quality of life can depend on it. Research MG. Although MG affects individuals differently you should know as much about it as you can. I would also advise that they get connected with support groups. I wish they were as easily accessible when I was diagnosed as they are now. The support, understanding and advice you get from others who are actually experiencing MG also is invaluable.
Any other comments or words of wisdom you want to share?
With proper treatment you can still live a very fulfilling life with MG. Don’t let your diagnosis define you.
Thanks so much again Nicole for sharing your journey with us. So much of her story mirrored mine (from symptoms to treatments) it was crazy. Above all I admire that she has maintained her faith through her journey and has a very positive outlook on things. If you’d like to connect with Nicole you can reach out to her via Instagram Cole3521 and Cole_does_keto.
If you’d like to share your story, please reach out. You don’t have to have MG. It can be any chronic illness and you don’t have to be the patient. You can be a caregiver or a loved one. We all have stories to tell.