Last reply 1 month ago
Thinking in the future

So I was at my Neurologist and her assistant stated to me that I should be a lot worse than what I am! My neurologist agreed.. so this of course got me thinking of the future. I have decided that I do not want to get bad, I know some people r and are happy and that’s their choice and right. I have talked to my best friend of 32 years and explained that if I do decline in health that I want assisted death which my Doctor does. I have been putting a lot of thought into death and preparation lately. I am presently healthy but if I am supposed to be a lot worse as my neurologist says I want to be prepared for the worse. Is this selfish? Am I over thinking? Does anyone else think like me? I am generally a positive person but this is stuck in my head lately…

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1 month ago

Hi. I have mild MS in the grander scheme of things, yet I often have dark, deathly thoughts. There’s nothing wrong with that. Worst for me is pain and the invisibility of it all cause I look healthy.
Realistically death is not even close for me.

Nothing wrong with being prepared. Are you mobile? Suffering with pain?

1 month ago

Yes I’m mobile have pain, but it’s the comment that my neurologist made.. it makes me think my brain one day will start popping like popcorn! It scares me a little.

1 month ago

Have some faith, they will crack MS and fingers crossed will repair the damaged caused. I’ve had dark thoughts also but now for me it is about buying as much time as possible for them to make the advancements. Eat clean, exercise, consistent with a DMT.

They will do it 😊

1 month ago

God I hope so!

1 month ago

@mikki131 , what a pessimistic team you have! Nobody can predict the course of your condition and that is confirmed by your team’s negative comments!

I can understand your thoughts in wanting to plan for the future, but I’m wondering whether these thoughts have been driven by your team’s negativity…….

I’n not aware of your age, so I’m unaware of how soon you need to be having these plans in place. I just feel that they’re a bit previous. I mean, anything could happen before your MS progresses markedly, which isn’t a given…….

1 month ago

Hello @mikki131, it’s a blessing that you aren’t too badly affected. And that was indeed a weird statement for your neurologist to make! Having an incurable condition inevitably makes us more contemplative. BUT, in being preoccupied with tomorrow, there is a real fear that we can miss out on the good things about today, and then regret not making the most of things while we still can. In reality, we are all preparing for death as it’s the one thing we’re all heading for. But that doesn’t mean we have to abandon a great quality of life now. There’s no rhyme or reason with MS; some people have many lesions and are majorly affected; others have only one or two, and have considerable difficulties. Maybe that’s what your neurologist is alluding to? I’m a positive person too, and have learnt (against my will!) to block out fears for the future, as it increases anxiety. That said, there’s nothing wrong with setting up your life to take account of possible eventualities. For example, I live in a block which has a lift. Anyways, go on with your life and make the most of each day 🙂

1 month ago

Could it be a misunderstanding? Maybe what your doctor means is that you might have many lesions that for other people could mean more disability and being worse and that in fact maybe you are lucky that these lesions are not affecting you that much as they are in parts of the brain or spine that are not used that much.

Anyway in my opinion what does matter is how do you feel, even the same disability for one person could be terrible and for another to not to be that bad (for example a drop feet for somebody that loves running vs a drop feet for somebody that loves watching Netflix).

As for your thoughts of course these are normal, it’s terrible to know that we MIGHT die sooner that the others or that we will be more disabled but the truth is that we just have more information about our future, while the person that tomorrow will have a car accident and will be totally disabled doesn’t know it today and of course that person would be also thinking about assisted death today if he would know about it. So don’t feel bad about these thoughts but also try to have support from the people around you or Psicologist or group therapy, whatever helps you.

1 month ago

That was a strange comment! and very insensitive. The fact is that while they can correlate the location and number of lesions with some of the impacts it is clear that there isn’t a straight line correlation. Our body has an amazing ability to “rewire” around damage and repair itself. We don’t even really understand how. Some swear by a certain diet that gives it the building blocks, some try herbs or supplements while others do exercise. Many people report amazing results. I push a bit down those angles as well as have been trying to increase my sleep and reduce stress which are both big factors. There is a guy on You Tube (Life of Seb) that is a Yogi and has some great programs, I think a Neuro looked at his MRI and made a comment that he had no idea how he was still standing ;-0 and he is amazing! the fact is that what shows up on an MRI doesn’t correlate directly to our condition or prognosis. They really don’t understand it that well. Some people only have one lesion and are severely impacted or they can’t even find the lesion! So they may have just been displaying that they aren’t very familiar with MS or haven’t seen many patients with it.

I’m also holding out hope in the remylination studies and the great strides research is making. I was Dx in 2005 right after the first DMTs started to be commonly used and was put on Copaxone. It may have helped some but is now felt to be not very effective with so many other choices out there. I have switched over to Ocrevus and keep an eye on stem cell work and other advances. There are too many things that I still want to do and see. I did try to push through things that were higher priority to make sure that I could do them while fully able (like travel to Hawaii, snorkel in the Caribbean, and see the Grand Canyon and some of the national parks) and made sure to set myself up in a house that is friendly if I have physical decline. I also heavily invested in retirement funds well earlier than a typical person…but those things I just think are prudent for about everyone, no one knows what the future holds. At least I have a good idea where my challenges will come from 😉

So- I’ve planned for the worst but hope to make the best of it. While the world may give me lemons I hope to make a passable lemonade…

1 month ago

Hi. I was diagnosed when I was 29, after many years of symptoms. I am now.56 and still have reoccurring remitting ms. I feel very black for long periods and then I look to my family and feel proud and worry where they would be without me. I enjoy my life too much to allow those thoughts to manifest themselves. Live has been extremely hard sometimes. But I have managed to restart my career twice. I realise money isn’t everything. Family is the strongest medicine you have. Talk to them and see the strength you can gain from them

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