Help with changes
Hi all!
Let me start this whole thing off by saying that I don’t know what to do. I was first diagnosed around 2018/2019 after a year long, excruciating battle of undiagnosed Trigeminal Neuralgia which was brought on by MS.
My first neurologist told me to stay positive and not get down on myself because that could in turn, affect how I’m feeling. I stayed super positive, held a benefit which raised $1,000 that I donated to the National MS Society and just never got down on myself.
I started out my MS medication journey on Copaxone which didn’t last long due to relapses. Then came Tecfidera, the first pill sent me into anaphylactic shock which was terrifying, but I’m still here! Right after the Tecfidera scare I was put on Gilenya and that worked great. At the end of January I had a relapse and was put on Ocrevus. I’ve heard nothing but wonderful things on Ocrevus but there’s doubt in the back of my mind which is causing my mental distress. I’m scared, actually, I’m terrified. I turned 30 on January 26th and had a relapse two days later. I just finished the starting dose of Ocrevus March 3rd and my left side is still affected from the relapse. My fingers/hand goes numb sometimes and my foot just doesn’t feel right. My hand gets twitchy and very unsteady. I don’t know what to do.
I’m terrified. I live a fairly active lifestyle. I play competitive cornhole 3-4 days a week, hunt and fish along with many other things I can do to stay busy. I’m afraid I won’t be able to do any of that in the very near future.
I’m having issues with staying positive. I’m getting down on myself extremely hard and I’m trying to shove everything deep down inside me but it’s overflowing. I try talking to family and my fiancé, but none of them have MS so they just don’t understand. They try to understand and help me but I feel that when I talk to them I don’t accomplish anything.
I don’t know what to do…
I have had MS for years. I carry on take gabepentin and smoke some weed. I know what your thinking Pot Head. MS is a personal illness get help from the doctor eat cherry for inflammation carry on with life slow down but don't stop. It's up to you suffer with it become your illness or don't. He'll yeah it hurts.
Hi,
!
I am sorry you are dealing with a relapse and stress and fear right now. I think that's pretty normal. And, it's very normal to also not always feel positive and strong during your MS journey. Heck, who could remain positive all the time?
As far as how you're feeling, the National Multiple Sclerosis Society has a number of services that connect people with MS to other people battling MS. It may be an option for you, so you can talk with someone who "gets it".
https://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One
Online communities -- https://www.nationalmssociety.org/Resources-Support/Find-Support/Online-Communities.
I love the outdoors myself (though I am an impatient fisher and don't hunt), so I can empathize about fearing the loss of your ability to partake in these activities. I don't assume that you are in a situation where you are needing to give up these activities anytime soon, but I wanted to share this article I found on the topic of hunting and MS -- https://www.outdoorhub.com/news/2012/10/09/adaptive-techniques-help-hunters-with-multiple-sclerosis/ (and here's a news story on a man with MS that keeps fishing -- https://www.ksdk.com/article/sports/fisherman-multiple-sclerosis-st-louis/63-4d1094bd-d518-4583-b7d8-9111c5bf778c.) And, I don't want it to seem as though I am being overly positive about MS affecting your ability to do what you love. MS straight up sucks. And I wish people didn't have to adjust/adapt/give up their hobbies due to their MS. But, if the time comes, I want you to know there may still be options to keep getting outdoors and staying active.
While I am no professional mental health specialist, I think acknowledging your feelings and processing them is a much better idea than trying to 'tough it out' or ignore them. And I am glad you talk to your loved ones about your emotions, even if they don't fully get it.
You don't face this alone! Please keep reaching out and feel free to come here anytime you need to vent or find some support. I hope your upcoming appointment is fruitful and brings you some peace of mind.
Best, Erin, MultipleSclerosis.net Team member.
