A wish... Progressive MS Forum

[Oops]

The title etc. say it all really... Can we have a forum for the SPMS/PPMSers please? Where we can talk about managing our disease without DMDs and the brick wall you hit on diagnosis of your Progressive status etc. - all the things that are peculiar to Progressive MS in other words? Please?

[davidtaylor603]

Reasonable request but in the meantime I suggest you look at the LDN section which works for all types of MS.

[debzsanderson]

Oops-I know what you mean.............My partner has SP and although he is now on LDN which is having moderate success it is so frustrating that there is so little treatment for it!!He doesn't even have a neurologist and hasn't seen one since 1995 which was a year after his diagnoses. We have been left to find stuff out for ourselves and muddle through.

The way the disease progressives is so different - although the deteriation is gradual it is ongoing and obviously unlike other types you know that you won't be returning to "normal".

 

debz xx

[Oops]

Reasonable request but in the meantime I suggest you look at the LDN section which works for all types of MS.

 

Not much use if you're not someone who's into LDN, David. Besides which, I'm talking about the day-to-day living with progressive MS like Debz says above, as much as the lack of treatment aspects. PLEASE don't take this the wrong way, but LDN isn't the holy grail for everyone, and whilst I have read that section extensively I don't feel it's of any relevance to me, so don't wish to post there so you can keep telling me to try it. I have very personal reasons for not wanting to.

[Marina]

This is just to let you know that we aren't ignoring you and will come back to this in good time I've a busy day today (and all of next week) so don't have time right now I'm afraid.

 

Oops, I agree with you that the LDN sub-forum isn't the area for discussing progressive types of MS - it's intended purely for discussion on LDN, and only LDN, itself.

 

Sorry if I sound rushed, but I am

[Oops]

No rush, Marina. Thanks for taking time out to reply.

[Marina]

I really am truly so very sorry to have taken such an eternity to reply...

 

We mods have had a discussion about this and between us we've come up with the conclusion that I'm afraid it would be best to not have a separate forum for the progressive types of MS. The reasons for this are varied and include the below. I apologise for the length of it, but apart from hopefully helping to clearly explain every aspect of it, it's also to similarly explain why we haven't created specific sub-forums for subjects like (specific) DMD's when we've been asked this before.

 

The main "MS Discussion" sub-forum (hereafter referred to simply as "forum") is intended for talking about all types of MS even if RRMS is the most common, and includes Limboland. To separate the different types of MS into forums of their own won't work in our opinion as, apart from other reasons mentioned below, there can be various similarities between the types of MS. So those with RRMS will either want to jump into a Progressive forum with their own comments on any similarity, or will ignore it totally when they might otherwise have been able to offer something of value.

 

Also, where would Limbolanders, the undiagnosed with symptoms similar to MS, or those with "Possible" or "Probable" MS go - are they as yet undiagnosed as having Benign, RR, SP or PP MS? Or what if they eventually get DX'd with something else with very similar symptoms (like what happened with DizzyDora, for example)? What if one is still a Relapsing SPMSer? What if someone's neuro is uncertain about their status? What if the neuros change their mind about the type of MS? (which has happened in one or two cases - and as if our Neuros are ever vague or uncertain!). We fear it risks confusing members and newbies as to which forum they should post in.

 

Without wishing to sound all doom and gloom, if we had a Progressive forum it might be that RRMSers may eventually post less in what would become mainly an RRMS forum as they'd instead go to the Progressive forum should they later get DX'd as SPMS. We already have a slightly similar situation with people whose main interest is LDN and who tend to either only post in the LDN section or who tend to mention LDN in most of their posts elsewhere regardless of whether LDN has been mentioned or not (no offence intended to any of you, as your contributions on LDN are always worthwhile and welcome!) - the LDN forum was initially created to bring more attention to LDN as it was far less known about then than now. As it is now, the already existing "MS Discussion" forum means RRMSers can already have an idea of what it might be like if and when they might become progressive. Another aspect might be that someone with RRMS, or someone not yet with a DX, will read the Progressive forum and risks being scared stiff in the possibly unnecessary event they might become SP or be DX'd as PP, as the worse aspects of progression - which do not always happen to all Progressive MSers - will be all the more highlighted than when it's mixed in with all types of MS. Then there might be those who'd say that SPMS is a bit different to PPMS in some other ways.

 

Additionally, topics all too often have a way of going off-topic and, before we know it, a topic will start in the Progressive forum with posts which could be of equal interest to RRMS and Limbolanders who, in turn, might then start joining in thereby mixing up topics on Progressive and RR MS.

 

Some members have also mentioned to us that on other MS forums, where there are dedicated sub-forums which split up types of MS or other aspects of MS, that they felt a sense of "them" vs "us" which tended to give it a bit of a negative aspect and/or turn it into "cliques" - something which a number of our members (eg, when newbies) said they were pleased to see we didn't have.

 

We also suspect a Progressive forum is unlikely to have much traffic if it were to be split off from the main "MS Discussion" forum. With little if any treatment and no relapses for those with Progressive MS, there isn't much to talk about that's specific only to Progressive MS. As it is, there are very few topics which have been purely about specific aspects of Progressive MS and which have had little or nothing specific to RRMS. In the midst of writing this, I've just remembered that when the forum was relatively new and starting to take off, we already tried having a separate PPMS forum (at someone's request) and it didn't work as nobody posted in it and others had already mentioned that they didn't think it a good idea to have a separate PPMS forum.

 

Therefore, our only suggestion would instead be to add " PPMS" or " SPMS" to the subject title of a topic to try to gain more attention to it being related to that type of MS. Talking of which, I have a topic on SPMS that might be of interest and which I will soon post about in the MS Discussion area

 

Once again, apologies for the huge delay in reply, and I'm really sorry to disappoint you but I hope you'll understand our reasoning...

 

As this (or similar) has been asked before, I'm going to pin this topic for future reference should we be asked again.

[Oops]

Thanks Marina, you certainly gave the idea a fair hearing, and that ultimately is all we ask.