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'secondary Progressive, but having a relapse

Hi All,

Been a long time since i came on here, so much has been going on.

I just felt i really needed your help, as i have had Secondary P for many years, been coping ok as best as i can, so now i have just had a Relapse , so i think or i know, but the Neuro say thats what you think, bloody hell, ok My know all, I also know my body too , why can’t we have relapse with SP, have you very experienced this ??

I asked for steroids , he gve them to me saying they wont help… thanks for that !!

I will not be beaten by this illness never have never will, my faith my strength to live, gets me through.

Never give in.

love Niyra

Steroids don’t listen to what neurologists say; they just barge in and quench any inflammation they can find and no questions asked. Subtle it ain’t, but never mind.

If your neurologist was completely sure that you weren’t relapsing, it seems to me unlikely that he would prescribe a blast of high-dose steroids, by the way. They are powerful drugs and far from risk-free; you only prescribe them if you judge there to be a good enough chance that the benefits will outweigh the risks.

I hope that, whatever ails, you feel much better soon.

Alison

You can still have relapses with secondary progressive MS,its not that rare either

i do, mine are more severe and last longer now.

in the early years of my MS i only had relapses every few year and partially recoverd after 2 to 3 month,

now i dont recover well at all from them,and they can last for 6 to 12 months.

Hello Niyra,you have your very own version of MS,and you are the world’s leading expert.Your body will decide if 'roids are any good,not a bloke ‘Who learn from book’(I can’t help thinking that, how Manuel said it)

Wb

I’m SP with relapses, so it does happen, different Neuros seem to have different opinions.

My friend who has been SP for many years now, recently had UTI that left her in hospital, she then had a relapse and was totally numb, couldn’t move at all but is slowly regaining her strength again and with physio has been able to walk a little and is taking one step at a time literally. Everyone is different with MS as we know, I agree with Wb you know more about your body than some bloke reading a book.

[quote=Corkie]

I’m SP with relapses, so it does happen, different Neuros seem to have different opinions.

My friend who has been SP for many years now, recently had UTI that left her in hospital, she then had a relapse and was totally numb, couldn’t move at all but is slowly regaining her strength again and with physio has been able to walk a little and is taking one step at a time literally. Everyone is different with MS as we know, I agree with Wb you know more about your body than some bloke reading a book.

it’s not SPMS if someone is having a relapse and recovers from that relapse.

Yes, that was the conventional view.
However, some consultants in the US are now using the term Progressive Relapsing MS.

Their definition seems to depend on on the degree of recovery from the relapse (which in turn is related to its severity).

Geoff

i think that i have progressive relapsing MS,just a shame that the ms specialist doesnt know it !!!

i have been told i am secondary progressive with relapses, mmmmm i wonder ,whatever type i have it keeps me housebound for the last few years.

Hi krakowian, my friend has had other relapses that have left her with permanent damage and had been pronounced SP many years before. I wouldn’t say she has recovered but the fact is that some of the numbness she suffered in hospital did leave her (along with exercise) able to at least take a few steps, she does need constant care from her husband at present.

Also I know another woman who has recovered well from a relapse with lots of hard work and exercise, she had been taken off of her DMD a few years before, as her Neuro pronounced her SP because one foot was permanently numb.

So I would beg to differ, as my last Neuro told me there’s a fine line between RR and SP. Neither of my friends were given steroids but have just used physio and exercises to recover some use of their bodies.

corkie,

the definitons of rrms and spms are flawed. we can have both at the same time - parts of us in a steady decline other parts may be recovering slowly.

One of the worrying aspects of the dx of spms is that it can take a degree of hope away from us because we are not expected to recover.

My understanding is that looking to someone’s future there is no difference between SPMS and PPMS

Also the terminology is scary - telling your family friends employer that you have a condition that is ‘secondary progressive’ is not very far from telling someone it’s terminal.

(with apologies for posting this message again)

I believe I am thinking in terms of having to come off of (or not being offered) DMDs.

I do agree that language can affect how people think of their condition.

krakowian, it might be a good idea if you read what the Society itself has to say on this matter:

Yes, the definitions could be improved, but you have to first understand the psychology behind the human use of labels (PPMS, RRMS, SPMS all being labels, rather than precise clinical definitions) to facilitate communication.

Geoff

Doctor Geoff

I agree RRMS SPMS PPMS are labels - sometimes not totally accurate ones. The problem is that they may be regarded as precise clinical definitions by some pwms and indeed by some neuros. This has implications for the DMD’s (including steroids) that may or may not be be prescribed.

I see no point at all in telling someone they now have SPMS. In effect that person (and his family etc) will expect no improvement in their condition. That is not a good thing because it takes away any optimism and any hope of an improvement.

Of course I’m not suggesting giving people false hope but it does no one any favours to take away all hope with an uncertain condition like m.s.

We all like labels, you just have to look at the Newly Diagnosed and before Diagnosis thread to see that. If nothing else my SP diagnosis, from RR with insufficient relapses to warrant DMDs, enables me to say there is no treatment for SP rather than have people argue and tell me “I should insist on treatment as they are always reading about new treatment” of course the Statins trials are now making the general public think progressive MS is now treatable so that blows that argument out of the water.

Sorry Nyria going off your topic.

Jan x

I think I am SP as my condition does not improve and my ability to walk is diminishing, also this has been pointed out to me by my MS clinicians. Far from making me give up, it makes me work harder with exercise regime. I know I am luckier than most as it seems to be happening slowly, just wish the pain from MS/arthritis (never quite sure which) could be overcome.

You do seem to be somewhat confused by the very concept of labels.

A label is a very high level term that is a shorthand term for a very complex description. The description itself is one or more levels above a definition.

By raising the issue of whether, or not, to tell someone that they are (to use your example) now SPMS is a totally different issue, and one that has come rather a long way from the Original Post. You seem to be implying that someone who is not regarded as SPMS will have an expectation of a full recovery - which is certainly not the case. Yes, I am aware that a few people claim to have cured themselves, but they have never offered any proof that their cure is anything but a long remission.

Those few apart, MS is a degenerative disease. There are no readily available cures, but there are a number of available treatments of varying effectiveness at varying costs. By definition (not by description) a degenerative disease will get worse. Just how fast it will get worse is another variable, but get worse it will.

Geoff