Last reply 1 year ago
Confused…

Ok, posted a couple of times on here before, but a year after my diagnoses I’m none the wiser as to what the difference is between a ‘relapse’ and an ‘active’ disease..? I’ve never had things explained to me really, how do I know if my MS might be moving from relapsing remitting to progressive?… Does that mean you have constant symptoms? Or do you always have symptoms, even while not relapsing?

Since my diagnoses I rarely have a week where I don’t have some sort of ‘symptom’ (numb hands, dodgy sensitive vision, fatigue, occasional bone weariness in legs, odd mood etc), does that mean my disease is worsening? Or does it mean that it’s just doing what MS does after diagnoses?…

I’m not currently on medication, as want to hold on it until I really need it, as need to work full time..

Can anyone please tell me when I should be worried? The ‘relapse’ that diagnosed me saw me off of work for three weeks with impaired balance, leg drag, no balance and extreme tiredness, to the point of being unable to do anything much.. I haven’t been that bad since..

Cheers guys!

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cameron
1 year ago

As I understand it, if you’re having relapses your MS is active. Yes, you may have ongoing symptoms and that’s one of the reasons it can be difficult to differentiate a relapse from ‘come and go’ issues. It sounds as if you haven’t had the rationale for treatment properly explained. The drugs aren’t first aid for symptoms when they get bad. They reduce relapses and because each relapse leaves the body in a slightly (or majorly!) worse condition, this is truly important. The other good reason (IMO) to be on treatment is that when you’re taking these meds you will be regularly and thoroughly screened by an MS nurse team. This process will help you take control of the MS overall because it gives you more opportunity to discuss your particular issues. Lastly, remember the MS ‘iceberg’. Nerve damage goes on continually in MS long before you may notice its effects so until science comes up with an out-and-out cure, stopping or at least slowing the disease process is the best defence available. xx


hels99
1 year ago

I think @cameron is spot on. My symptoms reduced after I started on a DMT. I still get fatigue, tingling, the odd spasm from time to time but it is more manageable. I work full time and the medication doesn’t interfere with that.


Anonymous
1 year ago

Hi @almost, I’m from your camp. I’m holding out on the drugs until I really need them. I’ve been drug free for 11 years and relapse free. Fortunately I was able to stop working which really helps with lowering the stress levels, I have a 5 year old, so stress is definately still there, but I manage ms with a strict gluten, dairy and legume free diet (the Best Bet diet), I’m refined sugar, processed food free too. I juice regularly, do yoga daily and keep chemicals out of my house and away from my body as much as practical. I figure if I remove as much of the bad stuff (for my body), then it can work on dealing with ms. My only symptom is fatigue and occasional numbness down one arm! When I relapsed I was paralysed down one side. Check out my FB page controlms – https://www.facebook.com/groups/Controlms/


tracyd
1 year ago

@almost

this is my description for MS to my friends who need to understand what it does to us on a daily basis.

MS is a progressive disease …. it’s like a fat kid with the keys to a sweet shop

If he pops in each night and takes a sweet from each jar you don’t notice what is happening, just the odd niggling feeling that something isn’t quite right.

This is what MS does to us all every day of our lives, it nibbles and nibbles at your myelin quietly and stealthily and it doesn’t stop.

The night the fat kid comes into your shop and takes a whole jar of sweets suddenly you realise something has been stolen from you.

That jar is your relapse ….. the MS took a big bite of myelin and got something important – something noticable ……

Having a treatment doesn’t mean that you suddenly have to stop work or change your habits, it just means that you are making a choice about defending yourself from the disease.

It’s a personal choice for each of us when we chose to make that defence.

– some of us are of the ‘first line of defence’ thinking – those who want to do what they can to stop ‘bad enough’ even being an option
– some of us are of the ‘last resort’ line of thinking – treatment free using diet and other techniques to manage the condition without medications

It doesn’t mean either of these camps are right or wrong it just means we’re all human and we get to choose how and when we fight.

I chose treatment early so that I would not need to have to consider long term medications for symptom management later on down the line when it ‘got bad enough’ . For me that was the right choice xxxx


ashory
1 year ago

I hope that you’re taking the time to really consider why you’re not in treatment.

I am not saying one way is better than the other but you need to understand the way the drugs work before making your decision.

Just because you’re ok and not experiencing symptoms now doesn’t mean that damage isn’t being done. In fact the only reason you end up experiencing symptoms is because the damage that has silently been happening has gotten significant enough to cause those symptoms. Sometimes the symptoms will get better but the damage that lead to them is highly unlikely to ever be repaired. Any new damage will compound on top of the existing damage with the potential to lead to worse symptoms in future such as those that lead to you being unable to live a “normal” life.

Again, this damage can’t be fixed or reversed by the medications available. The medications available are to stop damage happening in the first place or at the very least to slow the speed at which that damage occurs but if the damage is there as the saying goes what’s done is done.

There is no right or wrong decision. This is a personal choice however, I do believe there IS a wrong way to MAKE a decision and that’s making an uninformed decision.

Either way you should be participating in regular health checks and MRIs to ensure you are keeping up with the MS and not letting it wreak havoc in your body without you knowing anything until you suffer a relapse.


gibfish
1 year ago

I’m still baffled a little why medication is not offered as soon as diagnosed.

Having had two or three relapses and damage clearly done i’m now on a very simple two tablets a day Tecfidera and just wish i’d been given this from day 1 (albeit it wasn’t available in 2008 i think).

Anything you can do to stop the relapses happening is surely the way all newly diagnosed folk should do, please don’t wait till things get bad before you consider medication because at that point, its too late.

I feel no different (which is a good thing) and a year on these now with no relapses i believe in them, but the damage i’m told must have been done by the previous relapses won’t change, much to my frustration. Dave


stumbler
1 year ago

@gibfish , medical practice is constantly evolving, as more knowledge is gained.

Some Neuros are now adopting the “hit it hard, hit it fast” philosophy, but unfortunately, some are still too conservative.

I’m a bit, well, a lot older than you and I could be frustrated with my treatment over the years. But, it wouldn’t change a thing for me. I am where I am and I have to move forwards.

Don’t waste too much time on things you can’t change. 😉


almost
1 year ago

Thanks for the replies guys, I’m not sure that Ireland is particularly well set up support wise.. I’ve never been offered or given information for ms nurses or similar, I got told verbally a list of treatments available, but had to research them myself. I had to ask for another MRI (a year after my last one), the specialist told me they only give them every second year for MS patients… after bullying me quite patronisingly and arrogantly about not taking treatment. basically I’ve been given my diagnoses and then sort of left to it with no constructive guidance, apart from on forums like this. This experience is partly why I’m hesitant about medication, as I don’t feel confident that I’ll be monitored for harmful side effects well enough. Plus I’m living an hour from a hospital, so the fact that some of the treatments have ‘go straight to the hospital’ style side effects puts the fear of god into me.

I think I’m probably having another relapse at the moment, it’s just I know what it is now, so I’m just getting on with it. *shrugs.


ashory
1 year ago

Have you contacted the Ireland MS Society?

They may be able to point you in the direction of more appropriate Dr’s who can actually guide you through this better than the ones you have been seeing?

http://www.ms-society.ie/

Here in Australia we have great care and even being under a Neuro who specializes in MS I was still left with a lot of unanswered questions. Contacting the Australian MS society helped answer many of those, so hopefully the Ireland branch will be helpful for you too.

You are right to be concerned about the potential symptoms and follow up care but the fear and concern shouldn’t be stopping you from seeking answers to help get you where you need to be. There will be people out there who genuinely want to help you and can,it’s just a matter of you doing your research and seeking them out.

I sincerely hope you look into your options closer and find someone who can explain them all whether it be the non medication or medication route. I would suggest writing all of your concerns down as you think of them because if you do choose to contact the MS society I imagine you will initially be overwhelmed with information and may forget to ask some things.


makkymee
1 year ago

Hi @almost,

So, this MS is a total minefield. 6 years on I still feel like I hardly know it but I was told that after a relapse, you will experience background symptoms that can be heightened with alcohol or heat. I had a relapse of numbness, tingling and MS hug a few years ago. Quite often, my hands and legs feel numb and tingly but apparently this is as a result on my relapse.

I’m not on medication but am seriously considering Lemtrada.

Have a look at the ms-society site ashory posted above as there are centres that maybe closer to you than the hospital.

Take care
Makky

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