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How do I plan when I don't know?

Hi everyone, I hope you don’t mind reading my post & maybe giving me some advice? I’m not diagnosed yet, had transverse myelitis, seeing neuro on the 25th to tell him of some new symptoms I have. I really don’t now how I can plan the rest of my life like this? I’m going to be 32 this year & I at least would love to have one child. If I get a diagnosis & I’m offered treatment do I start the treatment & try for a child later down the line? How much later? Then me & my partner cannot afford to even have a family if I am not well enough to work, so if I can’t work that rules out having a child altogether. Even if I could work after a diagnosis how long could I even work for? Would I be well enough to? This is how I feel I have to love my life now with a question Mark over everything. I feel cornered by everything. How long can I really work for after a diagnosis? I do an office job so not strenuous or anything. Being stuck in this situation of ms is a nightmare.

Hi Anon,

If you don’t mind me saying, how can anyone “plan the rest of their life” anyway? It may come as an unpleasant shock when we first realise it, but none of us has control over what happens tomorrow, or next week, let alone “the rest of our lives”. If there wasn’t MS, or suspected MS, I’m sure Fate would have other surprises to throw, along the way. Nobody can see round the next corner, and know they’re not going to have illness, a financial setback, or a relationship breakup somewhere in the future.

Knowing you’re ill does make things a bit different, but in reality, you’ll still have to do what everyone ends up doing - making the best decisions you can, based on what you know NOW, because none of us has got a crystal ball.

Knowing you’re ill may in fact help you to prioritise what’s important in life, because you haven’t got the luxury of assuming you’re untouchable.

Tina

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Hi anon I can’t add anything to that which Tina has said. Ok, it takes a while to get your head around it but so does any major life change. There really is little point in trying to second guess what is going to happen tomorrow, next week or next month because you just don’t know, so you can’t possibly answer your own questions. Just try and slow down and try and take each day as it comes. I try to deal with each day, as each day presents. Xx

Hello,

I’m 27 and was diagnosed in april 2012, still struggling to see the future. But not giving up, I was a civil engi, worked at the olympics very manual hard physical work. I can’t go back to it at the mo (thanks ms), but i want to when/if i get better. I may retrain when this episode pass’s. I want a family sooner rather than later, but like you said their is the money worries.

But i tell myself every day i will have a family and a career, i wont give up. We don’t know what will happen with or with-out ms, but we can still have a wonderful life.

Darren

Every one is different but I thought it might help to share my experience. I was diagnossed with TM in 1986. I was then well for many years but eventually diagnossed with mild MS in 2007. I already had 1 son with I had TM, I went on to have a 2nd son with no problems. I am still working, I have cut my hours a bit to 31.5 hours a week and am still mostly very well.

So even if you do get diagnossed it may not have any major affects on your ability to be a parent and work.

Best Wishes

Sandra

Hi, one of the awful things regarding ms is the unknown. None of us know how and when this horrible disease will affect us. Some people go on for years with only very minor symptoms, while others will deteriorate quicker. As far as having children is concerned many people with ms have children and in fact a lot of people say their relapses improve during pregnancy. As far as being able to afford to have children is concerned if we waited until we could afford them whether well or unwell we would never have any. I think you should just go for it if that is what you want and it will make you happy rather than saying what if and not having children that you will regret for the rest of your life. Whatever you decide to do I wish you every happiness. Anne x

I agree with all the above, I was hoping some of it may help me out too as I often wonder.

I just go with the flow and I am spontanious with it, If I am having a good day like yesterday I was alright walking around wiht my stick, the wife and I went for a really nice lunch somewhere by the river it was beautiful. Today I feel like absoulte rubbish, I am struggling with every step so I know I wont be doing anything.

Running our own business is really hard, if I dont work I dont earn, we want children at somepoint soon too, and we will have them, you can never afford kids especially these days but we manage and get by and do what you can.

Good luck and let me know how it goes. Book in a date night with your fella once a month, to get out, that way your still doing something and its flexible for you.

Hi am don’t know where to start really Iv been diagnosed with depression in 2013 and treatment for 4 months I feel there is something else wrong iv told my doc but doesn’t seem interested I dont eat which it my biggest problem and I don’t eat because it’s like I get this sudden brain jolt and can’t eat another bite Iv also had a number of episodes of pins and needles in my face and fingers I also get joint pain a lot Iv been waking up lately with my right arm rubber dead until I physically lifted it at 1st I tho sleeping on it but now I know for sure not from sleeping on I am tired all the time I get like electrical shock inside my head sometimes I don’t really know what to do any more don’t know what’s wrong but there is something stoping me from eating I say now it eats when it wants I feel so down because of this

Hi,

You would probably get more response to this if you started a new thread, instead of attaching it to an old and unrelated one.

Have you recently forgotten, skipped, or tried to come off any anti-depressants? Missing doses, or trying to come off too quickly sometimes results in a phenomenon some users call “brain-zaps”, or “head-shocks”.

I’m not saying that is definitely the problem - I’m not a doctor - but as you mentioned being treated for depression, I wondered if you’d been missing any tablets lately, or trying to quit.

MS can cause electrical type sensations. It can also cause a very severe type of facial pain that makes it hard for people to eat. However, you don’t actually mention the word pain, so I’m dubious whether we’re talking about the same thing. MS does not typically stop people eating unless they have this very severe facial pain, OR they have a mechanical problem with swallowing.

Are the “jolts” related to eye-movement at all? If they were, it would make me think they might be related to missing or quitting ADs (been there, done that…)

If I’m honest, I do not think whatever is wrong sounds particularly like MS; however, not eating, for whatever reason, is serious, and needs to be investigated. You need to go back to the doctor and explain the problem, but I would strongly suggest you do not begin with: “Doctor, I think I may have MS!”

Most doctors have a horror of Googlers and self-diagnosers. MS is a comparatively rare illness (only about 1 in 1000 people), so not terribly likely to be the cause of your problems. Try to stick just to the facts of what’s been happening, and not second guess what it might be. But do go back and explain you’re not eating.

Post back what happens, if you feel you want to.

Tina

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