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Stupid questions?!!

Morning everyone

I don’t normally see this time on a Saturday morning but couldn’t get back to sleep as have a couple of questions going around in my head…so thought I should get up and ask!! I am new to all this and you will prob think they are rather stupid but please be kind!!

  1. I am struggling to understand the difference between symptoms and relapse. How do you know if you are having a relapse??

  2. It was only through reading on here that I am beginning to understand that DMD’s don’t actually slow the progression of MS but hopefully cuts relapses by around 1/3- if you are lucky. If they cut relapses, how can it not be slowing progression? Surely if relapses are happening less ofter then less lesions are forming?

As you can prob tell…I am a little confused…and rather than ask MS nurse i knew i would get better answers for everyone on here!

Emma

Id be interested to know the answers to second question as I was wondering that… In my eyes, if you refuce relapse then the relapses aren’t happening so is that in itself not affecting progression as deterioration usually occurs in a relapse? The first one I was told a relapse is something that may be impacting on your daily life and abilities, so sensations, numbness depending where not so much… However affecting walking then may be considered a relapse! There is a definition on this site. X x

When I start going numb which is what normally happens to me, i was told that if it was lasting more than 5 days it would only then be classed as a relapse. I had symptoms of dizzyness and periods of confusion(only lasting a minute or so)for 2 or 3 days before the numbness started. One thing i’m pretty sure of is that i get symptoms all the time now, from pain in my hands, vibrations, aches and the other day i had a kind of muscle spasm all down one leg. For me, when i’m in the midst of a relapse i definately know about it.

Take it easy.

I was very confused with all this at the start and I’m sure I had at least one relapse which wasn’t logged as I had new symptoms which I just thought was part of getting over the last relapse. Symptoms are the residual problems you are left with after you have had relapses and they are pretty much there all the time. Like my left hand which has some numbness most of the time, mostly in the thumb and first finger. Right now my left arm is numb right to the shoulder and this is a relapse. My toes are numb/tingly most of the time but, again, my right leg is now tingly up to the knee and the calf is stiff and this is due to a relapse which has slowly progressed over the last month.

I now believe a relapse is any new symptom which lasts longer than 24 hours and which isn’t caused by something like a cold or virus which has raised your temperature as this is a psuedo relapse. I had one in October 2009 where I contacted my local nurse due to the severe burning pain in my left arm which left me unable to sleep for several nights. I asked her if it was a relapse and she said it wasn’t as it hadn’t stopped me doing anything (er, except sleeping?!). She did come out at the end of the week and prescribed amitriptyline which took a further 5 days to kick in by which time I was a complete zombie. When I reported this to my neuro he logged it as a relapse. Result - I don’t contact my local nurse any more; I go directly to the nursing team at the hospital as I don’t have much faith in the local nurse. When I’m still in my first year after diagnosis and I need to know what is a relapse and she doesn’t know, I don’t really trust her knowledge any more.

I would say if in doubt contact your nurse/neuro and get the symptoms logged if they have dragged on for a while. At the very least, they will have a more complete picture of your health the next time they see you and if they feel it is a relapse and needs intervention they will soon tell you.

To answer your question about DMDs they do, on average, reduce the rate and severity of relapses by about 1/3 in most patients. That is to say they work better for some than they do for others. Some progression of disability is caused by the lingering symptoms and stiffness left behind after relapses so by reducing the amount and severity of relapses, this could reduce some of the progression of the disability. This is why DMDs do not work for people with PPMS. I have been on Rebif since August 2009 and this is my first relapse since October 2009 so I think I have had a good run and for me it has certainly reduced my relapses. (Of course, I may have been due for a good spell anyway, I will never know but I wasn’t prepared to take the chance after two severe relapses in three months prior to starting on Rebif.)

No doubt, someone else will be able to answer your questions much more thoroughly than I have been able to.

Take care

Tracey

Thank you so much for answers…I think i will only know what a relapse looks like when I have one…hoping thats not gonna be for a while!!

Emma x

I was very confused with all this at the start and I’m sure I had at least one relapse which wasn’t logged as I had new symptoms which I just thought was part of getting over the last relapse. Symptoms are the residual problems you are left with after you have had relapses and they are pretty much there all the time. Like my left hand which has some numbness most of the time, mostly in the thumb and first finger. Right now my left arm is numb right to the shoulder and this is a relapse. My toes are numb/tingly most of the time but, again, my right leg is now tingly up to the knee and the calf is stiff and this is due to a relapse which has slowly progressed over the last month.

I now believe a relapse is any new symptom which lasts longer than 24 hours and which isn’t caused by something like a cold or virus which has raised your temperature as this is a psuedo relapse. I had one in October 2009 where I contacted my local nurse due to the severe burning pain in my left arm which left me unable to sleep for several nights. I asked her if it was a relapse and she said it wasn’t as it hadn’t stopped me doing anything (er, except sleeping?!). She did come out at the end of the week and prescribed amitriptyline which took a further 5 days to kick in by which time I was a complete zombie. When I reported this to my neuro he logged it as a relapse. Result - I don’t contact my local nurse any more; I go directly to the nursing team at the hospital as I don’t have much faith in the local nurse. When I’m still in my first year after diagnosis and I need to know what is a relapse and she doesn’t know, I don’t really trust her knowledge any more.

I would say if in doubt contact your nurse/neuro and get the symptoms logged if they have dragged on for a while. At the very least, they will have a more complete picture of your health the next time they see you and if they feel it is a relapse and needs intervention they will soon tell you.

To answer your question about DMDs they do, on average, reduce the rate and severity of relapses by about 1/3 in most patients. That is to say they work better for some than they do for others. Some progression of disability is caused by the lingering symptoms and stiffness left behind after relapses so by reducing the amount and severity of relapses, this could reduce some of the progression of the disability. This is why DMDs do not work for people with PPMS. I have been on Rebif since August 2009 and this is my first relapse since October 2009 so I think I have had a good run and for me it has certainly reduced my relapses. (Of course, I may have been due for a good spell anyway, I will never know but I wasn’t prepared to take the chance after two severe relapses in three months prior to starting on Rebif.)

No doubt, someone else will be able to answer your questions much more thoroughly than I have been able to.

Take care

Tracey

Hi Emma, Yes it confuses me no end. Last time I saw my neuro he asked if there were any new symptoms to which I gave him details of 3 new ones. These symptoms would come and go over the course of at least two weeks and they would happen for about 20 minutes then stop for 30-60 mins then start again for another 20-60 minutes but it was like this for 24 hours a day for the two or so weeks. My neuro said it didn’t sound like a relapse and I really didn’t know how to reply to that. I hadn’t had any new symptoms for at least 3 months so there was a good gap between my last bout of symptoms and these new ones. I think I will always be confused as one health professional says one thing and another something else!!

none of these questions are stupid. health is subjective to how we describe what we feel. my son describes pins and needles as “glittery” he said when he crossed his legs for a long time they go glittery. he associates what he feels with things he’s seen. while it helps to talk to folk it sometimes inspires more questions. the important thing is that activities for daily living are working as best they can for you and things that work for you are great. x

When I first heard, seven years ago, that the interferon drugs slowed relapses but didn’t slow progression I was very surprised. Don’t the relapses cause the progression? I think the answer to that must be no - and maybe that’s not so surprising given that people with progressive MS get the progression without the relapses. Anyway, the interferon drugs do not slow progression - an uncomfortable truth that lots of people with MS ignore. You can check on a responsible website (like this one) or ask your neuro and they will tell you this is so.

If you look at the home page of the MSS website you will see that there is a suggestion that Tysabri will be the first line treatment for MS. That’s because it reduces both relapse rate and progression by two thirds. I don’t understand why the neuros are still doling out the interferon drugs when they have so little effect

Oh, I forgot to say, the way you know you are having a relapse is if they give you steroids and your symptoms go away or at least reduce a lot. If they give you steroids and nothing happens, you aren’t having a relapse and you’re probably stuck with those symptoms although the doctors may be able to reduce some of them with the various symptom specific medicines.

How do I know this? My neuro put me on steroids to see if they reduced my symptoms - when they did I became a candidate for Tysabri. He did also see active lesions on my MRI - I’m not sure whether this is also a sign that a relapse is going on.

[quote=“Sewingchick”]

When I first heard, seven years ago, that the interferon drugs slowed relapses but didn’t slow progression I was very surprised. Don’t the relapses cause the progression? I think the answer to that must be no - and maybe that’s not so surprising given that people with progressive MS get the progression without the relapses. Anyway, the interferon drugs do not slow progression - an uncomfortable truth that lots of people with MS ignore. You can check on a responsible website (like this one) or ask your neuro and they will tell you this is so.

If you look at the home page of the MSS website you will see that there is a suggestion that Tysabri will be the first line treatment for MS. That’s because it reduces both relapse rate and progression by two thirds. I don’t understand why the neuros are still doling out the interferon drugs when they have so little effect

[/quote] Hi sewingchick’ luv your frankness and 2 the point about interferons relapse/progession. this is js what i was told by my MSnurse yrs ago’ i asked about side effects (erm) !! so i didnt bother There are so many things that we dont realise about some super drugs! and even more that Joe public aint got a clue about, Julien…

This extract is taken from the msdecisions website and refers to research about the level of progression of disability of patients on DMDs:

Benefit 3:
The interferon beta products each slow the rate of development of disability in the short term (2 years) - although it is not yet clear how large this effect is.
The major trials of interferon betas have found that using them slows the development of disability in MS, although there is still debate about how much this happens. Looking at all the major trials together, the Cochrane review (Cochrane Rice 2004) found that interferon betas slow the development of disability by about 31% in people who stayed on treatment for 2 years. However, some doubt exists over how accurate this result is because some people dropped out of the studies before the end of two years, and we don’t know how their disability changed.

The National Institute for Clinical Excellence found that open label studies (i.e. studies where both the patient and the medical team knew which drug the patient was taking) suggested that interferon betas continue to have a positive effect beyond 2 years. For people who have taken the drug in studies for approximately 4 years, disease activity appears to be lower than might otherwise be expected.

Glatiramer acetate
Whether glatiramer acetate has an effect on the development of disability is still unclear. As a result of this, the product license for the drug in the UK does not cover this outcome.

The Cochrane review (Cochrane Munari 2004) concluded from its review of the research that glatiramer acetate did not show any significant effect on disability increase, measured as a sustained worsening on the EDSS.

Tracey

But this is what the MSS website section on dmds says about the interferons