Last reply 3 years ago
No treatment reasons?

I’ve noticed on people’s profile’s it says lots of you are ‘not on any treatment’. Out of interest, can I be nosy and ask why you have chosen not to take any? I’m curious, as that never really even crossed my mind! Thanks, Sarah x

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druid
3 years ago

My Neuro thinks it would make me worse as i am only “touched” by MS and wants to wait and see. Happy enough so far.


stumbler
3 years ago

I’m one of those, “not on any treatment”.

I’m Secondary Progressive (SPMS) and, in common with other Progressives, we don’t suffer with relapses. So, DMDs, which reduce the frequency and severity of relapses, aren’t used.

Other than that, it would be down to personal choice or just recently diagnosed.


Anonymous
3 years ago

I have PPMS, so no treatment as yet, there are trials been run on various drugs, but nothing you can get on prescription at this point in time.


northernlass
3 years ago

Hi @sarahm I’m not on any DMD’s because my Neuro who initial diagnosed me with RRMS (April 14) wanted to see if I would come to the end of the relapse I was having (been having it since Sept 13) and if then I had another relapse at some point she could give me DMD’s straight away to reduce that relapse as the best results for DMD’s I was told is if you take them at the earliest onset of a relapse. I have never stopped having the relapse at any point so now it is believed I may be secondary progressive 🙁 .


anneb
3 years ago

When I was diagnosed in 2006 DMDs were mentioned but I wasn’t pushed to start. I’ve had a few relapses over the years but don’t really have significant problems at the moment (I hope I haven’t spoken too soon). I asked my MS Nurse about it last week and she said that I’m not eligible because I haven’t had two relapses in a year (I haven’t seen a neurologist since 2007, I think)
Who knows whether I made the right decision eight years ago not to have medication.


cclaire
3 years ago

I don’t fit the criteria, I have only relapsed five times in nineteen years, three after stressful events, once after a virus, once after an infection. This country is full of boxes to tick, but I don’t tick the DMD box.


brokendancer
3 years ago

I was diagnosed with PPMS so no meds, now I know it’s RRMS and I’m waiting for stemcells to grow… did double check that my consultant will give me DMDs if the trial doesn’t work out for any reason.
Would love to say I can cope with MS without drugs but seriously, I’d much rather have some hope 😉 x

I’m SPMS now so no official treatment. I take LDN, Fampyra, Vit D, Pregabalin and Evening Primrose oil. I didn’t take DMTs when i was RRMS as i heard they gave you flu like symptoms etc. I didn’t need those. I was happy in my normal routine of getting up and going to work!!

I think i’ve been SP since diagnoses anyway!!


neena
3 years ago

initially I steered clear of medication but I kept having relapses and was advised by my consultant to start the medication. I was very nervous about the injections and to be honest I still hate taking them.. but it has helped and I have not had any relapses since.


reddivine
3 years ago

Well for me, i was diagnosed in mid 90’s and NEVER OFFERED ANY TREATMENTS. It really is a postcode lottery and depends entirely on your neurologist as to what you are offered.
So not so much a case of CHOseN as not having had a choice!

Recently have been put on Gabapentin for neural parathesia in right arm,but now had marvellous letter from hospital saying it may be carpal tunnel….


sarahm
3 years ago

Thank you everyone for your replies. It’s making much more sense now. I’ve have 4 relapses in about 18 months which is probably why I started quickly. xx


chloeautumnx
3 years ago

Hi. I’ve had 3 relapses in 4 months (worst one is at present… I hate double crutches and I can’t walk). I’m waiting for Lemtrada (yay) which should be on the horizon soon I hope! After first being estimated that back in January I wouldn’t be on medication for atleast a year, to only 4 months in and needing it is a big change! I’m hopeful for the future and staying optimistic (just!) X


Anonymous
3 years ago

hi sarah- i am on the old….lets wait for another relapse its much cheaper than another mri treatment!


Anonymous
3 years ago

I’ve only ever had one relapse and will be starting lemtrada soon. Much seems to depend on your neuro’s treatment philosophy. Being a politely challenging and ms savvy patient helps too.


hollylb10
3 years ago

I am still waiting for treatment. My scan has confirmed I have MS but the hospital still hasn’t signed it off so as far as they are concerned I am not an MS patient. So frustrating. Once I get the the official diagnosis I will then be on a waiting list to go to an MS clinic for treatment. Seems to be a lot of waiting in my case!

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