One Year Later

New diagnosis and before diagnosis
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Hello!

It’s officially been 1 year since my first MS-like symptom began. I’m still without a diagnosis, but physically my symptoms have been progressing at a slow(ish) rate. I’m now trying to schedule a consultation with another MS specialist in Columbus OH, since the alternative is waiting for a nerve conduction study scheduled for the end of January 2025.

I feel pretty alone in this limbo most days, and while I try my best to keep my head up and remain positive, it’s hard. Today, I held my fiancé while we cried together in our car during my lunch break. Things have been hard on him, and I feel terrible for adding to his stress and worry with my own pessimism and fear. He hates seeing me in pain and hurting, and I hate seeing him go through those same emotions as well. It’s a struggle, but we’re making the most of our communication skills. I have a better understanding of how important honest and vulnerable communication is in a relationship. I’m just hoping that I won’t wake up in an empty bed one day.

Now that I’ve passed the 1 year mark, I feel numb. I think a part of me was waiting for my body to make a miracle comeback in the last month. I am only 26, so surely this must be some very odd presentation of RRMS right? The statistics are overwhelmingly in favor for my age range, so I can’t possibly be one of the 10-15% with PPMS…right? At this point, I feel that my gut called it after all. I’m really struggling with this possibility, and keep finding myself thinking, “Is right now the best life will ever be? Will the rest of my life just consist of fighting to keep mobile/independent and finding reasons to live?”. I’m sure a part of that is just me being dramatic. Still, I wrestle with these dark thoughts and emotions daily now.

I’ll put more work into developing coping techniques and self-soothing skills in the meantime, but it would be really nice to have some answers. Even though I’m terrified of getting bad news, it would at least be a step forward. Continuing to live in limboland with no news, treatment or plan while my symptoms get worse is not an option I’m willing to pursue at this point.

I’m sorry this post isn’t very positive. I’m not giving up. I just need to rest. If anyone has any tips for staying positive and remaining hopeful, I need them. Thank you :heart:

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Limbo is the worst time, really it is, but MS takes it’s own sweet time - time that we should not allow it to steal.

I thought that I had PPMS during my limbo years too - nope, RRMS presenting in a weird way. I was prescribed medication for the pain, which works really well and I am now on a DMD which, fingers crossed, will slow things down.

If you are able to try mindfulness/meditation it could help hugely with the stress etc. Humans are hugely adaptable creatures; I’ve adapted to each curveball MS has thrown me - although L’Hermittes (electric shock sensation when flexing my neck) does from time to time elicit some very un-ladylike cursing.

For me, it took 9 years to reach a definite diagnoses of MS - during that time I worked (and continue to work) full time, travelled (still do), earned a Black Belt in Taekwon-do (now 2nd Dan), organized events (family, friends, work), partied, chilled out with friends and family, read good books, listened to great music etc. MS or not, it was not going to steal any time from me.

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Hi! @TheresaB

Thank you for your thoughtful response and advice! I’ve been practicing mindfulness and meditation on and off over the last year. I’m going to start practicing again after work, and this time I’m just going to keep doing it every day. It’s difficult to quiet my mind, but trying is better than letting it run me ragged.

If it’s okay with you, do you think I could message you privately? Your response gave me some relief, and I wanted to ask a little more about your diagnostic story. If you’d rather I didn’t though, I completely understand! Either way, thank you for your advice, and I hope you have a wonderful day! :grin:

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Hi, yes its OK to message my privately - I don’t mind questions regarding the dx journey.

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