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A quick question as an ignorant PPMSer

As I have been cut loose into the big bad world without any possibility of treatment and have little or no knowledge of the efficacy of DMDs I wondered if anyone could tell me (as a matter of interest) how long do these delay the development of MS?

Is it the same as the disease itself, the fact it is individual to each person? Do you end up with a better quality of life day-to-day than, say, a PPMSer whose disease keeps moving on? Or if a PPMSers symptoms plateau is it similar to having a delay created by the DMDs?

If these are really stupid questions that can’t be answered ignore me.

Thanks

Teresa xx

They definitely aren't stupid questions Teresa, but they are really really hard to answer. Here's my best guess!

 

In the beginning, most RRMSers find that their symptoms improve very well during remission, however, as time goes on, the body gets worse at repairing the damage and the symptoms don't improve so well and start to accumulate. So, some years on, most RRMSers have many long-term symptoms on a daily basis (just like progressive MSers). Then they'll have a new relapse, which may or may not improve after some length of time. Etc. If the RRMSer starts on a standard injectable DMD within a couple of years of diagnosis, it seems to delay the onset of disability - when the symptoms start accumulating. The effect isn't big, and it only works if the DMDs are started early. So, basically, someone who starts early will become disabled later than someone who doesn't (on average).

 

The effect of DMDs varies a lot though. Some people do really well on them; some don't. Some people develop "neutralising antibodies" (NABs) to them so go from doing really well on them to them having no effect. The average is a 30% reduction in the number of relapses. The remaining relapses are less severe. Relapses can do significant, permanent damage, so avoiding and dampening relapses is good news. But relapses do seem to be a separate process to progression. Standard DMDs don't do a whole lot of good for progression. However, the stronger DMDs do help and there are trials going on at the moment with Gilenya and Tysabri and progressive MSers and I think they are having an effect, so perhaps the stronger DMDs do something for progressive MSers too.

 

One thing that DMDs definitely do is help to prevent MS fully developing: DMDs are now prescribed to people with CIS in several countries because they significantly reduce the number of people who go on to develop MS. Rebif has just been approved in Europe for CIS. Whether or not NICE approves it we'll have to wait and see, but I doubt they will - they don't even like prescribing it for people with definite MS.

 

RRMS vs SPMS vs PPMS and quality of life? If I had to pick a "type" to have, I'd go for RRMS, but I know people with RRMS who are very badly disabled and people with PPMS who are not, despite having MS for similar lengths of time. People with SPMS who have no pain or fatigue, but can't walk. People with RRMS who are bedridden, but others who run marathons. There are just no rules with MS.

 

If I was PPMS, I would be taking LDN. Have you looked into it? See the ldnresearchtrust website. There is no DMD for PPMS at the moment and there are several PPMSers on here who swear by LDN. There are also those who don't, but nothing ventured, nothing gained.... You could also look into getting onto a clinical trial. There are more and more being run for PPMSers. See the Multiple Sclerosis Research Blogspot.

 

Hth!

Karen x

Hi Karen

Thanks so much for such a comprehensive answer. I did talk to the MS specialist about LDN but he says that he is not keen on it as it plays on the opiate receptors and can become very addictive.

Teresa xx

I've not heard that before! He may be right, but then if you're planning on being on a low dose of something for the rest of your life to treat a condition that will be with you for the rest of your life, does it matter? Especially if it is known to be safe and might help that condition to stop getting worse?

The people at Dicksons, the chemist in Glasgow who provides it, are really good at answering any questions - why not give them a ring? They definitely know more about it than neuros. Or speak to some of the PPMSers who use it on here? Whammel springs to mind.

Incidentally, I am well known for coming down like a ton of bricks on certain people on here who make crazy claims about what LDN does. It is absolutely NOT a miracle cure and I'm not saying that it would definitely help. I'm just saying that it might.

 

If it's not for you, please check out the possibility of trials. There are definitely some going on and they are having promising results.

 

Mind you, it occurs to me that this is all way too soon! You've only just got your diagnosis and here am I shoving all this down your throat! SORRY!!! No more :-)

 

Kx

 

You’re not shoving it down my throat at all. I like to be as well-informed as I can be about what is happening to me.

Thanks for all the helpful pieces of advice, I will cogitate over it all and decide what to do.

Teresa xx

You have to remember that I am not a neuro - I'm only a semi educated amateur enthusiast!

 

When MS causes damage to a particular area, then only the things that that area do or contribute to can be affected. So, if someone has a lesion that causes their right arm to go numb, then that lesion cannot make their left leg go numb because that part of the body isn't controlled by the same bit. So MS symptoms don't tend to move about. If someone's got multiple symptoms, they've either got multiple lesions or they have a lesion in an area that controls all those places.

 

It is highly unusual for someone with MS to have lots of new, unrelated symptoms at once. They will usually have specific area(s) with symptoms. The severity of the symptoms might vary a little during the day and from day to day during the relapse, but they will stay in the same place. When the body manages to repair the damage enough, the symptoms go into remission, but the damage is never perfectly repaired so when the person is tired or hot, the symptoms often come back a bit temporarily. As time goes on, the body can't repair itself and/or work around the damage so well so the symptoms don't go always away any more - that way, the more relapses, the more the amount of everyday symptoms accumulate. Some symptoms never happen once and never happen again. Some become regulars. Some never go away.

 

So, one of my first relapses was a burning left leg. It went away after a couple of months and I didn't have it again for many years (despite having multiple relapses). It came back again last year during a relapse, but it didn't go away this time. I don't have it all the time, but I do get it quite a lot (when I'm tired, hot, I've been overdoing it or when I'm relapsing). But the burning doesn't move to my arms or back or anywhere else. I do get burning in my right leg too, but that's because it was a symptom that I had in a different relapse. So now I sometimes get burning in both legs, but it is caused by two separate lesions.

 

Having symptoms that move about a lot and/or are transient/brief and/or having lots of symptoms all at once all of a sudden are usually signs that it isn't MS. However, there are no hard and fast rules so seeing a neuro is always the best thing to do. (Vit D, exercise and diet are also very very sensible!)

 

Hth.

Karen x