SP Forum

Has there ever been a forum titled Secondary Progressive? I don’t think we are in the minority and in the great scheme of things I don’t suppose it really matters but it does seem to be a glaring oversight. Maybe there was one and it was never used. Do any of the long term users know why? Jan x

We are the forgotten few.

Although we are prodably not few just forgotten.

Ronin

It just seems so odd to have Forums for various people affected by MS but not to have one for SP ers. Yes we can post on any of the forums but what does it say about SP not to have a specific forum. Being SP has massively changed my life. I know it isn’t the same for everyone but if we had a specific page maybe it would be easier to find out how other SP’ers deal with the problems they now have to face, to discuss the lack of treatment available to us or the treatment that may become available in the future. Jan

Why would you need one…? If you look at it like that then RR doesn’t have it’s own forum either.

Personally I think the EL forum covers most of the bases…

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Jan, l was first diagnosed nearly 32yrs ago. And told it was SPMS. l have never had relapsing remitting - my ms has always been there. Recently, it was explained - by someone on here, that to be SP - l must have had RR at some time. But as far as l can remember l didn’t. Mind you, not much was known about MS 32yrs ago - and very little learnt about it since.

l take high dose vitd3/vitb12 - magnesium and try to keep to a gluten-free diet. l do take LDN. And yes, left to get on with it.

[quote=“tay”]

Why would you need one…? If you look at it like that then RR doesn’t have it’s own forum either.

Personally I think the EL forum covers most of the bases…

[/quote] I don’t need one, and I take your point about RR? I think everyday living gets bogged down with too many topics perhaps a change would be beneficial. For example there could be a just chat forum that excluded things to do with MS, perhaps one to do with financial matters, one solely with medication maybe one to to with general MS queries. Just thinking out loud… Jan x

[quote=“spacejacket”]

Jan, l was first diagnosed nearly 32yrs ago. And told it was SPMS. l have never had relapsing remitting - my ms has always been there. Recently, it was explained - by someone on here, that to be SP - l must have had RR at some time. But as far as l can remember l didn’t. Mind you, not much was known about MS 32yrs ago - and very little learnt about it since.

l take high dose vitd3/vitb12 - magnesium and try to keep to a gluten-free diet. l do take LDN. And yes, left to get on with it.

[/quote] I was RR from the early 90s till a massive relapse 4 years ago left me with SP it has changed my life out of all recognition. I realise there is so much I don’t know, perhaps because I didn’t use this forum till recently. It would be so much easier and less taxing on my often muddled brain if I didn’t have to filter the various forums for specific things I wish to learn about. What is LDN ? See I’m oblivious to most things :slight_smile: Jan x

l really only use the Everyday Living forum - as it does cover all aspects. Never understood why we have the other categories.

The ‘young’ and newbies can all benefit from advice from EL. As most of us have been there and done that. Lots of practical and personal advice on meds/benefits/DVLA/mobility aids/exercise/diet etc.

I look at them all, maybe because I’m relatively new to the forum and still learning but I don’t want to miss something that Is relevant to the situation I now find myself in. Jan

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I know what you mean about EL getting bogged down sometimes, maybe if it could be sub-divided somehow into…

  • symptoms, treatment, diet etc…
  • financial,employment,benefits etc…
  • other general discussions, jokes etc…

Or,might help if the search function on this forum was better…

i use the primary progressive forum a lot, they are a great bunch,and i asked if it was ok to join there gang,as i didnt have ppms but spms,which is very similar,i find i have a lot in common with them…so i flit about a lot…but i think an spms board would be good too.

J x

from a future perspective there is no difference between SPMS and PPMS - that is if you accept these categories.

I don’t.

I think that to dx someone with SPMS is horrendously flawed - bits of us may be in a steady decline but other bits may be improving.

yes its a very grey area, zetland,i have been told i am spms then it was changed back to rrms, then back to spms,all i know is that i am a hell of a lot worse than i was 22 years ago,whatever type it is,i dont think labels are of any use either.

We could do with a jokes forum. Stop people posting joke after joke and pushing post’s from people looking for help off the top page.

Anon 2.0

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I have read all your comments with interest. Haven’t been on forum for a while but have met with same confusion from neuro about my situation. Started off RR 16 yrs ago then was sure I’d progressed to SP after 8 yrs as got little or no remittance from symptoms but no doc would confirm this. They all seemed too scared to commit as there was no definite treatment for SP and they didn’t want to be sued for misdiagnosis! I ended up in hospital after what could only be called a massive relapse, yet still the docs argued and said you couldn’t relapse in SP, others said yes you could. I tired of the miscommunication between staff and have since changed to a dedicated MS team in my area. So far so good but I am interested in all opinions. Hope to speak soon.

Jackie

It’s nearly two years since this thread was aired, time flies when you’re having fun

I don’t have a Neuro as such but my MS Nurse and I decided between us I’m SP by this simple fact that I haven’t relapsed for six years but am steadily declining. Just remembered I have my yearly appointment this month, that’ll be the yearly struggle for a parking place anywhere close to the hospital entrance.

Jan x

Janhhh

LDN is Low Dose Naltrexone.

not been passed by NICE but it isn’t too expensive.

google search LDN Aware or LDN research trust

carole x

Thank you Carol.

Jan x