lightningduck 29/07/12
Last reply 5 years ago
Relapse Fears

I have a fear and maybe it’s rational, maybe it’s not

I was DX’ed in May because of a pretty intense (for me, for someone who didn’t realize they had MS) attack. The outcome of the attack has left me with rather mild symptoms.

The Dr wants to get me on something (not sure what), but I haven’t started anything yet. He wants to try to maintain my life as it is so I don’t slide down the hill of aging any faster than anyone else my age (I’m 43, which I think is older than the main demographic here)

OK, DX’ed in early May, first appointment with a Dr in Mid July…he wanted to see me in 2 months but that got pushed out to Oct 26 due to staffing at the hospital

So my fear is that if my first attack was in early May, what are the odds of having a second attack before my next appointment in late October before I have a chance to do anything positively medically? What are the chance that any such attack would leave me worse off than I am now?

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chrisg
5 years ago

There is no rhyme or reason to this, just keep going and look after your self!


Anonymous
5 years ago

We hear you. We’ve been there. You’re thinking, “Why are we waiting to treat this? Shouldn’t we do something now? What if it gets worse while we wait?”

It is possible you might have another attack, but you’re still recovering from one, and in my experience, I rarely had to deal with another one during recovery.

BUT, that means you must take care of your body and rest as much as you can. That goes for the rest of you reading this post, as well.

BTW, you’re not that old based on the demographics of this site.;)

Best wishes.


stumbler
5 years ago

@lightningduck , I’m a believer in the fact that stress is a major protagonist of MS.
Now, if I told you not to worry, given the circumstances, you’d probably say, “How??”
But, can you recall anything major going on in your life prior to your first relapse, either at work or at home? You may be able to identify an incident, which kicked this off.
Generally, you need to accept that MS is not a life-threatening condition. It’s also not a ticket for a permanent wheelchair ride. You may need to amend your life aspirations to accommodate MS, or you may not be unduly affected by it.
Your neuro may be looking to consider a Disease Modifying Drug (DMD) for you, which helps to cut down the incidence of relapses.
So, educate yourself about MS, but do go easy on yourself and look after yourself.


lightningduck
5 years ago

Yeah, @stumbler … a certain amount of irony that stress makes MS worse but stress ABOUT MS itself is a major stress point


stumbler
5 years ago

I totally agree, which makes it a bit of a conundrum. But, no-one can predict the course of this condition with you, so why worry about something that you seemingly have no influence over.
But, you understand the predicament, so just try and avoid exacerbating the situation.
Hope this helps.


bubblesgalore
5 years ago

@lightningduck i do understand that one…. i havent fully recovered from this relapse and there is a huge part of me that is waiting for another fall…. i have spent this weekend recharging my batteries.. i knew i just couldnt keep up with my friends so have taken time out from them all…
thinking of you and get it 100%
mwah mwah xx


lightningduck
5 years ago

You’re right @stumbler

Early on (relatively) I lived in a state of “live for today” The future could be really, really messed up or it could be relatively good. I couldn’t afford to hope for the best, i couldn’t afford to fear the worst…so I intentionally put myself in a state of self-denial about the future in not really thinking about it and instead just focusing on waking up every morning and taking what that day has to offer.

In having appointments and plans out at time in the future, I’ve forgotten some of that mentality and I think sometimes I need to remember it

@heatherl it does seem an odd mentality of “oh, we want to be aggressive in treating this, come back in four months and we’ll get something started” 🙂

@bubblesgalore – sometimes you just need those times…how’re you doing?


f3ng5hu1
5 years ago

Firstly, age wise, there are a few of us middle aged on here and older too, age doesn’t really matter even though it’s plugged as a young site (i think they do it like that to console us haha)

I just read this after posting about my bad day.

The whole relapse thing confuses me cos on the one hand i’m told that a relapse isn’t a medical attention relapse unless it’s more than 24hours of whatever the symptom is.
All my happenings storms and ms quirks seem to happen on and off but fairly regularly hence my confusion about relapses.

Does it count as a relapse if your just fatigued for a week for instance with other bits of symptoms in between?

With regard to your question about could an attack leave you worse off than you are now I’m not sure, it’s so different for different people that it’s hard to pin down like that. It’s literally a case of one day at a time mostly i think and if a storm comes then seek help, if it’s fairly calm, don’t panic too much or worry. After my bad attack earlier today I’m just grateful to be out on the calmer sea again lol, it’s a bit like that, as random as the weather.


scotkiwi
5 years ago

As much as I love my friends and family, I dont think they ‘get it’ when I say that I just dont know what I will wake up to, tomorrow. Most days, its just the usual morning horror at my alarm going off waay too early. But sometimes its scarier.
Had two fairly major falls this week whilst on my bike – so my thanks to you all too.
We’re cracking into a bottle of wine where watching Olympic stuff – so I’m raising a glass to you all. Cheers!
S


lightningduck
5 years ago

Thanks, @scotkiwi 🙂

@f3ng5hu1 as near as I can tell, ‘relapse’ just means “new lesion”, at least medically. What does that mean? Who knows? I think once the nerves are damaged then how your body deals with that is really all over the map.


f3ng5hu1
5 years ago

I’d been given to understand that a relapse was a period of time over 24 hours while under duress from ms in some way and that anything less than 24hours (like a brief spasm etc) didn’t count. That was from my ms nurse a while back. i think I need to see her again about this.

Lol still confused about the term relapse.


lightningduck
5 years ago

You could be right, I think part of my uncertainties is I didn’t get a lot of information when diagnosed (ok, I did get a whole packet of stuff but didn’t read it all)

http://ms.about.com/od/multiplesclerosis101/p/ms_relapses.htm

Looks like you are not alone in being uncertain 🙂 But it looks like we’re both sorta coming at the definition from different sides


cameron
5 years ago

I think you’ve got to see it as a ‘countdown’ to the doctor’s appt. not a black hole. As @stumbler says, stress is hugely unhelpful, so could you think of the intervening months as time when you start making the life changes that shift-ers talk about here? Looked at another way, if you had seen an MS nurse now, you’d be told about the importance of diet, quality of sleep etc.- and you’d have come away determined to follow the guidance. I’m suggesting you start now as if you’d had that consultation. In 3 months, you could try out a few feel-good techniques (massage? spa therapies? superfoods? , new forms of exercise… whatever sounds fun and do-able). The waiting time also gives you a chance to keep a log of symptoms which you can take to the appt., so that you’ll arrive very self-aware and able to tell the neuro exactly what’s going on and articulate your concerns. As to relapses: as everyone says – who knows? If something were to happen, you cd go directly to your GP and get steroids, asking him/her to pass on the details to your neurologist so that it’s evidence (important because it may affect whether you meet the criteria for the DMDs). I don’t have the knowledge to tell you whether going on drugs 3 months later would make any difference but can pass on what was said to me. My neuro said the same – that he wanted me on DMDs as soon as possible. That was the beginning of December. But he also said he wouldn’t prescribe them until I’d got my mental state better and that involved going on an orientation programme. I started the drugs at the end of July. Now – if it REALLY had been that critical, I don’t think he would have said that. As far as I know, the DMDs don’t do anything instantly – their protective effect builds gradually, so – coming back to @stumbler‘s argument, the best strategy is to get your body and mind into training, pamper and de-stress yourself to be the best you can for the October appointment.


bubblesgalore
5 years ago

@lightningduck….. guess i just needed to off load today… it has all got on top of me this weekend. i know like everybody else here, we hide these fears well. our faces do not tell the story of whats going on in our heads… one more sleep to get through and i jump on that work wagon…. i just hope the week goes quickly xxx


lightningduck
5 years ago

@bubblesgalore , no problem 🙂 Sleep well and I hope the week is good for you

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