I had an appointment with my neurologist this afternoon. My original one … the one who diagnosed me with MS just over a year ago now.
He was very patient with me and answered all our questions. He’s put me back on my medication … the same one he put me on just over a year ago. We talked to him about the pros & cons and he strongly believes this medication is best for me and my symptoms. He was very respectful of the other doctors I’ve seen {in the past few months} and their opinions. But when we mentioned that one indicated my symptoms could be because of the type of medication I was on … he let us know how strongly he felt that information was false. The medication is one of the first on the market, but it’s also the most studied and the most proven. Bottom line, it’s the right kind for me.
I’ve felt no worse, or no better being off of it.
The spinal tap results, along with my symptoms, optic neuritis, and new clinical symptoms are conclusive of MS. At my exam today, he noted weakening in my right hand and loss of sensation in both of my toes. That’s new.
Honestly, he gave me the choice of going back on the medication or not. He said I could wait 3-4 months, have another exam, see how I’m feeling and decide then. Or even wait a year {or sooner if new symptoms show up} and repeat the MRI and go from there. His first choice was for me to start the meds again … but if I wanted to wait, he was okay with that too.
So anyway … I’ll have to do the titration dose again {where I start the meds slow until I’m at my full dose … 7 weeks}. And have a nurse visit me again. And here we go again! :)
Honestly … I’m okay with it all. I have no fear, worry or anxiety. I know the injections are sucky and I’m not especially looking forward to that again. But I had a great summer off of them! I’ve learned things about myself {how to be stronger and stand up for myself} and I think this was really a great process to go through and get some more definitive answers.
I gotta tell ya … I’m exhausted! So I sure hope I’ve remembered and mentioned everything and articulated myself somewhat clearly. Most importantly though … thank you for taking this journey with me! Thank you for your prayers, encouragement and love!!
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and what a roller coaster journey. but you’ve travelled with grace, and i’ve no doubt that you will continue on in the same manner. but if you hadn’t taken the chance, you’d have never known, and knowing what you are up against is better (in my opinion!) keeping you in my prayers, dear friend!
whoooo hoooo!!! i am so happy for you! OF COURSE not that you have ms….but i know exactly how it feels to go to so many doctors & wait & wait & wait &….. this doctor sounds like a gem. OF COURSE you don’t want ms, but now, hopefully, your heart can be at peace with this diagnosis. you rock tracie. from one ms girl to another!
all things happen for a reason and having gone through all you did in experiencing and visiting other doctors, you ended up right where you should be… that has to speak volumes!! finally, it seems you have the answers you need and the confidence in what your doctor feels is right for you. thanks for taking to time to explain your appointment… now get some rest :) love you.
completely agree with trisha. thanks for explaining your appointment and trusting is to join you on this journey. i’m sorry that you are starting those nasty injections again, but i am SO glad that you feel confident in your doctor and in the path you are on!! hope you are resting! love you!
definitive answers clarify life, don’t they?
i’m thinking one more reason it’ll be nice to have taylor close.
love you!
I’m going to give you the biggest hug when I see you!
I feel like you’re really at peace right now with everything after reading this. :) so glad. and still praying.
At least you’ve got somewhat of an answer… right? I wish I were going to see you next month with Cyndi! I’d give you a big hug!
Still praying for you. You have been through a lot the last few months. Praying for continued peace and healing.
” I have no fear, worry or anxiety.”—- that right there is HUGE. Millions of people don’t have that kind of peace and they haven’t even dreamed of such a medical journey!
I am not even sure what to say. I am so glad that you have an answer but wish that I was there to give you a hug and tell you what an inspiring, amazing person you are. Hugs to you!!! xoxoxo
its so good to hear that you have some sort of answer and peace. i know this journey must be so frustrating for you. hang in there.
oh sweetie … the word “again” just hangs in this post. I love you and continue to pray for FULL healing!!
Wow… Rollercoaster is right! I really wanted a different diagnosis, but I know you are at peace knowing you have gotten many opinions. Boy I love you girl!! God bless you tracie
Tracie, I first want to say that you have a true gift of capturing just the most endearing moments. I started following your blog a few months back. Somehow, I found it linked on a blog of a blog, or perhaps on a blog of a blog of a blog…ha! Funny how the world (& wide web) is inter-related, intertwined and connected. But I’m always excited to see what new adventure, family, or furry friend you’ve captured on film next. I’m truly in awe of your work. I have always loved photography, and I finally have in my possession, my very own dSLR camera. I am so excited to fumble and learn how to capture my own moments and memories on film. For the time being, my “great” shots, I’m sad to say, happen almost on accident. But I’m eager to learn, learn, and learn some more!! And I want to thank you for helping me as many of your posts have been great resources for me.
Also, I wanted to let you know, that my heart also goes out to you. I have been following your MS story as well and was eager to hear the latest news. It seems you’ve been hanging in “limbo” for a while without REALLY knowing. And sometimes as it seems in this post….there IS comfort in knowing. The frustrating part of MS, is that “no one” seems to know “enough” and so you bounce from doctor to doctor, specialist to specialist. It was the exact story of my mother. My mother was diagnosed with MS when I was just 8 years old; that was 22 years ago. I am now 30 years old and am proud of what a courageous woman my mother is. I am stronger because of her. We are all very blessed that she is still in miraculous health considering what an unpredictable course MS can provide, this is what I wish for you. I am hopeful, that the knowledge base regarding MS will continue to change and grow for the better. From what I can tell, you exude such strength and positivity and you are surrounded by the most nurturing love of God, family and friends. That support is invaluable. Take good care and God bless.
MS diagnosis is very difficult due to the numerous symptoms that it shares with other conditions.
Being diagnosed, will help you know with what you’re fighting and help you be prepared for what’s to come.
It’s needless to say that you should consider all your options.
Also, keep in mind that medication, with a balanced diet and an exercise routine will help you keep your health up for longer.
Another piece of advice: keep yourself informed with all that new and MS related, because, information is power – especially when you have a disease that’s very unpredictable.
I think God led me to your blog today. I’m a 26 year old mom of twin girls and I was diagnosed with MS 8 years ago. As i was reading this post, I completely remembered being in the exact.same.place after my diagnosis. The 3 years after my diagnosis were tough, both physically and emotionally. But, praise God, I haven’t had an exacerbation in FOUR YEARS. Something I never imagined I would say. I ran a 5k this spring. God has filled me with healing so many times. I would love to share more and learn more from you! Shoot me an email when you need to tell someone who understands what you’re talking about! I’ve felt all the symptoms and emotions you expressed in this post. Love you, sister!