@Pigecan

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Pigecan

Treatment or no Treatment...

Hi everyone, I am still sort of new to this site. I have been diagnosed with CIS as of October 2015. So far the only incident was a bout of Optic Neuritis, which I have not recoved from yet. I struggle everyday with the treatment or no treatment question. I read my MRI report, I reviewed my first Neurologists assessment and then the second Neurologists assessment. Conflicting results all round. Is there an absolute way to determine whether my CIS is headed for full blown MS? The diagnosis was October 2015 and my next MRI is June 2016. From what everyone has experienced themselves, is waiting until my next MRI before starting Avonex smart or not so smart...

cherish

@cherish

@pigecan I think it's always smart to start a Dmd. Have you been given the option to start the avonex? Had I been as clued up as you are early into ms I would 100% start a Dmd. I was much the same as you years ago with cis opt neuritis but other than that I felt like superwoman hence me ignoring ms until it seriously took a hold of me. There's others here that can give you great advice, but just thought I'd give you my own opinion. Are you frightened of starting avonex? You will do just fine. Lisa xxx

Pigecan

@Pigecan

@cherish You are lovely and I am thankful you responded. I can start Avonex anytime I am ready and I am just putting it off because yes I feel fine and no other episodes have surfaced. I think you are right, I need to wrap my head around the fact that it is what it is and at least if I am on treatment I stand a chance of slowing things down. How long after your CIS diagnosis was it until you were an MSer? I am not sure why but at least once I day I tell myself that I am that small statistic that won't have the full blown disease... hahaha arrogant no doubt. You have set me straight. Cheers lovely lady

cherish

@cherish

Aww bless you @pigecan I first had optic neuritis in 1996. The eye doctors told me not to be alarmed but they wanted to do a head and neck mri. I ignored it until 2005! I didn't want no mri bcoz I felt superb. Then slowly from 1996-2005 I got opt neuritis again 4x, the old pins and needles, numbness, pain, etc etc so gave in January2005. I still never started a Dmd till last year 2014. The avonex is a neat little injector once a week, pow, over, in sharps bin. Ofcourse you may get side effects but they are maybe worthwhile side effects. Sore muscles, bit fluey kind but is easily sorted with some brufen and paracetamol. I would have done it if I had the time over again. Lisa xxx

Pigecan

@Pigecan

Words of wisdom. Sometimes I just need to hear the truth. I'll begin my treatment in January and give myself another month to ride the false sense of security I have bestowed upon myself. I'll maintain the bubble till 2016 then allow reality and sensibility to take over. As always, thanks.

Stumbler

@Stumbler

Hi @pigecan , over here in the UK, we have the MS Trust, who write this about Clinically Isolated Syndrome (CIS) :- "Research suggests early treatment of a clinically isolated syndrome with disease modifying drugs can delay conversion to MS in people at high risk of going on to develop MS. The 2015 ABN prescribing guidelines state that neurologists may consider the use of beta interferon or glatiramer acetate for people within 12 months of a clinically isolated syndrome when MRI evidence predicts a high likelihood of recurrent episodes." Now, given where you live, I would suggest that there may be a high likelihood of recurrent episodes. The advice to "....consider the use of Beta Interferon or Glatiramer Acetate....." is specific to the UK. Your Neurologist might actually suggest one of the more efficacious Disease Modifying Treatments (DMT). What we all try and avoid is reaching a point in time when we look back and say I wish I'd started a DMT then......

cherish

@cherish

? ? You will do just fine xx

Pigecan

@Pigecan

Thank you everyone. Sometimes a little advice can help. I have selected Avonex as my DMD. I am usually so sensible, so thank you for clearing up my ridiculous thoughts of not being treated. I am a bit of do not take medication advocate and now I need to become a preventative meds evangelist. Many thanks

cameron

@cameron

Also, you need to be a 'if-this-doesn't-suit-me-find-me-something-that-does'! Once you're on meds, you'll be monitored, which in itself is a reassuring process because you get the time and opportunity to discuss symptoms with people who know how to help. Please avoid what my friend did: i.e. came off a DMD and because the neuro team was not up to speed she was allowed to 'see how things went'. By the time she'd decided that this wasn't necessarily good advice, too much time had elapsed in terms of prescribing criteria - under NICE guidelines, she was no longer eligible for a DMD because her last relapse wasn't recent enough. And she is now the first to admit that 'untreated MS gets worse'. xxx

Pigecan

@Pigecan

Thank you @sandwich and @Cameron. I find that this forum has provided me with so many answers, I am truly grateful. Treatment is the way to go, I will start soon on the Avonex and yes will be sure to change it up if I feel that its not working for me. My newbie fears got the best of me but without a doubt I believe that - treatment is better than no treatment.

SarahBurns

@SarahBurns

Hi I started the drugs and it really slowed things down and gave me a better quality of life. I'm 10 years with it and an EDSS of 3 when I was diagnosed it was a 1, within a few months it was a 2.5 the drugs took me back to a 1 within 2 months. I did beta interferon for 8 years, tried avonex, Tysabri and now on Copaxone. Biggest success was the Beta and Copaxone but I've got other friends who had no relief from Copaxone and others who are great on Avonex. All the research I have done I found all the reviews of Copaxone were really really positive with no bad side effects. So this was my next choice when I had a bad reaction to Tysabri (I'm JVC positive). Do some research and read the consumer reviews and get a great neurologist who will spend the time discussing the options in terms you understand. xx

AussieKylie

@AussieKylie

@pigecan my first symptom was ON last year andcwas classed as CIS until July this year when one of my brain lesions showed activity. However since my first MRI I've had 3 more to monitor if anything has changed. I'm discussing meds with my neuro in January and have no idea what to choose. One study says drug A is the best and study B says drug X is the best. I find it very confusing so I'm just waiting to discuss with my neuro, take all the info home and research my options before I decide.....unless of course my neuro highly recommends one over the other then I think I'd just go with that. I'm glad you found us on shiftms, everyone is so helpful and supportive.