Last reply 6 days ago
First time poster. Feel a bit lost

Hey everyone, so here’s my story. I’m 38 was diagnosed in 2017. I think I always had symptoms but things didn’t start going wrong till 2013. My mom suddenly passed away from cancer, then in 2015 my wife was diagnosed with brain cancer. My motto was always that I wasn’t saving anything for the return trip, to do everything I could for her. I started having real pain in my knees and started physical therapy, it didn’t help and the therapist send me to a neurologist. A MRI later and I was diagnosed. My wife passed in September of 2017 and I have been going downhill since. Lots of fatigue, leg issues and now I’m just trying to keep it together. I went on a road trip last week from Jersey to Idaho and blacked out while driving, crashing into some road signs. The doctor but me on ocrevus infusions, I’m on my 3rd now and I don’t think it’s doing anything, I feel myself getting worse. I consider myself a caregiver and I don’t like getting help from anyone, just don’t know how to accept it. I have a relationship for a few months with a great woman but put an end to it because in my head I was getting worse and didn’t want someone else to be put though the same thing of watching someone get progressively worse. So here I am somewhat lost, wanting to talk to people but not wanting to let the cat out of the bag except to my inner circle.

This site is great, already feels nice to tell my story.

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stumbler
1 week ago

Hi @donjewelsny . You have had an awful few years. I’m so sorry that your Mother and wife passed in such a short time for you. The obvious stress of both these situations has probably provoked the progression of your MS.

Now, you need to lead a settled, balanced and healthy lifestyle. Live healthily, eat healthily and avoid (or manage) stressful situations.

And, don’t push anyone away. That shouldn’t be, or needs to be, your decision. You are so much more than your MS, so don’t isolate yourself.


vixen
1 week ago

Hello @donjewelsny, I’m so pleased you have found this site, lots of lost souls and not-so-lost souls who all understand what it’s like to be us. You’ve had a horrendous five years but have somehow gotten through it. My understanding of Ocrevus, which has only just been approved partially in the U.K., is that it works behind the scenes to slow down progression, rather than to improve symptoms. I was diagnosed last year too, so the ramifications are still unfolding gradually. I’m doing OK though, I think. Do you work? Sending you lots of cosmic support across the Atlantic……. 🙂


donjewelsny
1 week ago

Hi @vixen, funny your from th UK, I’m a huge Doctor Who fan, (Baker is my favorite). All any of us can do is keep moving forward, there’s no time for self pity only understanding limits, I pushed them last week and have a screwed up car now. I know that when I’m tired I have to rest. And that’s all I can do. Yes I work, I guess you would call it a stressful job but I love it. I haven let anyone at work in on the Ms stuff and won’t till it gets too bad. It’s just sucks that this happened so late in life, I’m just happy that I did all I could for my wife and she didn’t have to see this. I know there’s nothing to help us get better but a few more good days is really all I’m looking for. Thanks for the support, and if you ever look me up on Facebook please don’t mention the MS stuff.

Thanks


vixen
1 week ago

Hello again @donjewelsny, I guess you haven’t seen any episodes with the new female – Dr Who……I don’t know how old you are, but there are a number of folk on here – myself included – who are not youngsters! I got diagnosed last year too. It’s very humble and beautiful that you don’t want to inflict the suffering of observing others suffering on a potential partner. There have been lots of posts on here about relationships. But earthy and truthful relationships based on respect can get through these things, trust me. Anyways, I hope you haven’t been put off of driving. In the U.K., with MS we have to reapply for licences every three years, with the validation of our consultant. I don’t do FB so your secret is safe with me! 😉


donjewelsny
1 week ago

@vixen I’m not put off, I love driving. To answer your question I’m 38 so in no short terms a youngster.


donjewelsny
1 week ago

@vixen I do watch the new series and she doesn’t do too bad of a job. Not like the old doctors but better then most of the reboot doctors except for Capaldi who was smashing


chezy17
1 week ago

Nah, definately a toss up between Smith and Tennant, Capaldi was ok ish I guess. Haven’t watched the new series yet, usually watch it with my son but we’re into The Flash at the moment, so binge watching that 😊.

Sorry to hear that you’re going through such a bad time, all I can say is keep smiling and looking for the rainbows where you can.

If you’re calling yaself old at 38, then I don’t want to reach 37 lol!


donjewelsny
6 days ago

#Chezy17 not old just well aged like a fine wine


3973stuart
6 days ago

Hi Don, sorry to hear of all this horrendous news. I understand the lost feeling you have as I know it lingers. Unfortunately bad news seems to follow bad news but I am ever hopeful this cycle will change for all of us. Keep your head up high and carry on to achieve all you can

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