Forum

Where to start?

Hi everyone

So totally lost and confused as my neurologist is about to take me off avonex and say I have SPMS. Now what do I do and where do I go from here. I have a 3 year old little girl so I’m scared for her and making things good for her when I don’t know what to do for help or where to go.

Can someone please help me out.

Take care all.
Marian

I would start by looking at the unapproved, but possibly effective low dose naltrexone. www.ldnresearchtrust.org

 

Don't worry about your Neurotic re-badging you as SPMS. You have your very own version of MS.Out of the estimated one million sufferers worldwide nobody has MS exactly like yours.

However, your Neurotic along with every other one on the planet has to justify its wages so they try and categorise every case of MS into RRMS, SPMS, Primary Progressive or the mysterious Benign.

You will wake up tomorrow with the same MS as you've had today.The only difference is that the Neurotic has justified its wages and the drug companies will sell more drugs to the NHS,if the Neurotic prescribes any of them to.Don't start thinking that things are different for you...........................................They aren't.

 

AS for help, your local chapter of the MS Society may be of help,and I suggest you stay close to your GP.

 

Wb

I am not sure how things work in the UK but in Australia Betaferon is also licenced for use in SPMS. It might be worth asking your neuro about this?

Also I am SPMS clinically but on my records my nuero is keeping me RRMS as she doesn't want to cut me out of the chance of getting on a couple of the newer drugs in the pipeline that she thinks will be of benefit for me regardless of what the Govt funding bodies think of it. Would your neuro be amenable to keeping you "officially" RRMS for the sake of allowing you to get beneficial drugs?

Also another thing to bear in mind is that for a lot of people SPMS can herald in a new stage of stability in the MS journey. Instead of rapid fluctuations and declines in health many people do actually stabilise and their decline and progression can be very, very slow. So you may actually be entering a less tumultuous period of the disease.

SPMS can sound scary but it need not be as bad as it sounds....

All the best,

Belinda

Hello Maidmaz,

I to have SPMS, you will find that you will cope with it. It's knowing you have it is the worst. It will take you time to get used to another title but I'm sure your neuro will give you some other drug to help you. You will learn how to get around any problems that arise, just give yourself time to adjust.

Wishing you the very best.

Janet

x

Hi Marion

If your Neuro is correct then you may not have any more full on relapses. I was talking to a lady yesterday who was in her 70s and was told she was S/P years ago and she’s still pretty active; more than me actually. I have been told I am S/P or there abouts but am allowed to stay on Betaferon. It might be worth asking.

Good luck Wendyx

Hi Marian -sorry I can't offer any advice on meds as have never been offered anything apart from IV steroids in hospital when I had R/R. At that time I was in hospital with relapses three or four times a year, and it was hell, then suddenly the relapses became further apart and I was told I now had SP. I definitely know which I prefer! Haven't been hospitalised for over ten years now, and while I still have every symptom in the book, NOTHING has got worse in those ten years, so please don't worry about the SP "label". All the best, Bin. x