Hi,
Has any one else gone through “limbo land”
Been taken off Betaferon and left with the normal manageable drugs because secondary has now decided to show leaving my relapsing behind.
Is there any DMD for secondary ? or have I just got to manage with what I have ?
Andy
Hi Andy
Usually people use the term ‘limbo land’ for when they are being assessed for MS in the initial stages. But I can see why you’re using it in this context. I thought that either tecfidera or tysabri were deemed to be beneficial for people with secondary progressive MS who still have relapses. If you do still have relapses, it might be worthwhile talking to your Neuro about leaving you with the RR label and trying a different DMD before resigning yourself to SP and therefore no DMD!
Otherwise I think it’s about symptom management rather than disease modifying drugs. So maybe you should have a throrough symptom v drug review. Or if you don’t already, you could try to get some help from a physiotherapist. Also, you could look at some of the alternatives to conventional medicine, like vitamins D and B12, plus Biotin (other people can give you much more info on this). Plus some people swear by dietary regimes to make changes to their symptoms.
Whatever you try, I hope you get some positive solution that’ll take you out of limbo land. I’ve always thought it’s an uncomfortable place to be!
Sue
Yeh hun, limbo land is where folk dwell prior to getting a definite diagnosis.
I spent many an eon there! Nasty place.
pollx
get on tecfidera. demand it. raise bloody hell until you get it. and if that fails to benefit you, have tysabri. (sheesh i sound like a biogen sales rep!)
to hell with the flaccid ideology that slipping from one category to the next, by way of whatever arbitrary criterion is preferred by a particular neurologist, is bullshit.
they cannot provide you with healthcare by providing you with nothing. you are far from the scrap heap, and to consign you to it now is criminally negligent in my mind.
That`s right Paolo! Tell it like it is…too right and all!
pollx
Hi Andy in no mans land myself, like you I have been told to finish my supply of DMDs & now what!!! I’m back in a month to see whats the alternative, but I’m taking Paolo’s advice, raise hell & ask for something, anything!!! Not out yet!!! Tracey x
Maybe we should start a new movement to ban unhelpful MS labels. If a person may be having relapses, they should be entitled to DMDs if they want them. Telling a person they are no longer RR but SP therefore cannot have a drug that might still help to prevent further disability, is at best unhelpful and at worst damaging. My neurologist when asked recently described my MS as “essentially relapsing remitting”. I actually feel like I’m with the other people who are maybe at the end of RR and becoming progressive. But I’m still entitled to take tecfidera because of his wording!!
BTW the best known record by the band Stealers Wheel just came on the radio, this is the lyrics to the first verse:
‘Well I don’t know why I came here tonight,
I got the feeling that something ain’t right,
I’m so scared in case I fall off my chair,
And I’m wondering how I’ll get down the stairs,
Clowns to the left of me,
Jokers to the right, here I am,
Stuck in the middle with you.’
Thought it fitted very well!
Sue
Thanks for the comments, yes I agree I was in limbo land when awaiting my diagnosis and receiving my first DMD’s
Now that secondary has taken over, I feel like I’m back there again while waiting for the next round of drugs.
But get the feeling there is not much to choose from or they are dragging their feet, waiting for me to get worse before prescribing the next DMD if there is one.
I suppose I will have to see what happens next !!
We haven’t got a large MS Team in north wales only consists of 2 people (medically) hard to get an answer from anyone or reply the same day. Usually you have to wait a week or more.
Where are you welshpony?I’m in wrexham, but under Chester/Walton, these are excellent I have to say. I’m in exactly your position Tracey x
I completely agree - there’s more than one sort of MS limbo to be in, isn’t there?
Alison
Hi tracey,
I’m near Caernarfon, come under the Walton area but go to Glan Clwyd for appointments.
Moving to Bangor for a even smaller unit. now that I’m secondary.
Andy