anxious123 05/05/17
Last reply 1 year ago
Spine lesions

I have just got my mri report and it shows lesions at c2 c3 c4 c7 and one om thoracic area..thos on addition to numerous brain lesions…i have stupidly googled and found articles saying spine is worse than brain more likely to lead to disability also more likely to be ppms..any thoughts?

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the β€˜x’.


stumbler
1 year ago

@anxious123 , wait for the Neuro to explain the significance of the scan results, rather than using Dr Google.

Brain lesions are acquired as part and parcel of life as well.

These lesions are probably historical damage, unless a contrast agent was used in your scans.

There are lots of stories about people who have had MS for absolute years and have various disabilities. What you have to realise is that all of these historical examples have not had the benefit of the latest thinking on MS or the latest treatments. So, what has gone before is no indication of what will happen in the future.

Hope this helps.


anxious123
1 year ago

Its the extent and number that are worrying me …just not in good place at moment …i have seen neuro since scan he just said there were lesions but didnt explain where etc but just got copy of referral letter which sets it all out..have another apt in 2 weeks but worrying myself silly in the meantime and whilst symptoms seem to be remitting the ones in my lower legs stopping me driving etc are constant and only slightly better. Steroids finished 2 weeks ago so unlikely to work now..


stumbler
1 year ago

@anxious123. well, you can’t do anything for the next two weeks, so try and park this and try to relax.

The steroids will still be working with your body for the next six weeks to help it recover. But, your body needs you to rest up and relax to allow this to happen.


anxious123
1 year ago

Thanks it helps


stumbler
1 year ago

@anxious123 , remember there are only two certainties in life, death and taxes. πŸ˜‰


imbarca
1 year ago

@anxious123 just to say that I have spinal lesions and am rrms so it doesn’t automatically mean ppms. Spinal lesions are much harder for the body to compensate for, so you feel the effects much more. In some ways this is an advantage; you’re much more likely to take the ms seriously than someone who has fewer symptoms but underlying damage that’s silently happening. You have the chance to hit hard with a range of effective treatments – even if it is ppms we are close to having treatments available.

You’re quite right that spinal lesions do affect mobility more. I have some issues (dropped foot, weak knee) but am very much still walking 12 years in. I spent some time being pissed off with my lot but then realised that I have fewer brain lesions than many people; I have no issues with my vision, speech or cognitive ability (touch wood!!!). There’s no good place to have lesions for sure, but it’s good to remember everything that still works and try not to dwell on the stuff that doesn’t.

Finally, two weeks into steroids is early, early days. Relapses take a while to get over. Once you’ve rested, it might be worth looking into physio to try and ‘wake up’ the muscles that have been effected. I give myself a year for any new problem to improve with time and exercise before accepting this is my ‘new normal’. All the best.


lozwo
1 year ago

Oh gosh you sound just like me πŸ™ I did reply to a previous post but I’m 12 years in, have loads of spinal lesions and am leading a completely “normal” life (whatever that actually means!), running after to little ones, working etc.

The anxiety can be so much worse than any of the symptoms I have experienced over the years πŸ™

Here if you wanna chat xx


anxious123
1 year ago

@imbarca what treatment are you on?

Thanks for your replies …just not in a good place at moment. Currently cant be bothered getting out of bed…legs numb and tingling and now feel like i am neglecting my family


anxious123
1 year ago

@lozwo what treatment are you on? Do you have any symptoms?


stumbler
1 year ago

@anxious123 , you’re not in a good place mentally at the moment, as you’re coming to terms with all this.

Have a word with your GP about what’s going on. You may need a bit of help to get over this present situation. Yes, I’m talking anti-depressants, but don’t see this as a sign of weakness. It’s just some temporary help whilst you regain your perspective.


imbarca
1 year ago

@anxious123 I’m 2 months on from my second dose of Lemtrada, which has been really good for me. I tried Tecfidera 3 years ago but it didn’t work for me. It was a shame as I had very few side effects from it. Before that, I didn’t take anything. Partly because I was diagnosed at a time when only the CRAB drugs were available and I wasn’t impressed with their efficacy, partly because I was planning on having a family in the near future and partly because I had my head in the sand (I decided I was going to have ‘nice’ MS that wouldn’t be disabling or otherwise effect my life….)

I think choice of treatment is a very personal thing though. Lemtrada is very effective, but it also carries significant risks. I was prepared to take those, partly because I was starting to deteriorate quickly in the 12 months before the first treatment and partly because I was confident that I would follow all the advice about diet and medication carefully and would have no issue sticking to the follow up monitoring.

The main thing to be aware of is that whatever path you choose to manage your condition, monitoring the activity of your MS is really important. If you continue to relapse, you need a different approach.

I’m not surprised you don’t feel like getting out of bed; it’s such a lot to take in. If you’ve family to support you, let them. Give yourself an easy life, kids will survive with pizza and TV etc. Be kind to yourself, it won’t feel like this every day x


stickler
1 year ago

@imbarca you could actually be me our stories are so similar. My main problem at the moment is feeling like I’ve got a bag of sugar strapped to my right leg. I’m on Tec and fighting to get Lemtrada. I’ve just started a course of a acupuncture and I’m surprised to say it’s actually working to alleviate some of the stiffness in my leg.


potter
1 year ago

I like you bag of sugar description, I usually say it feels like a slab of meat glued to my leg. I have been on Tec for four years now and I haven’t had that feeling very often since I have been on Tec. My legs still get numb if I have been standing to long. If I have someplace to sit down it will go away, if I don’t I just push through it sometimes it will go away other times the pins and needles get worse. But I am still walking so I just try to ignore it and be happy. I am way to old for Lemtrada but I would have gone that route if I was younger, when I was diagnosed Rebif was the newest treatment. Things have come a long ways baby! Potter


anxious123
1 year ago

Thanks for all your replies. Feeling a bit better today. Wish there was a way of beating this awful illness for everyone x


katy79
1 year ago

@anxious123,

Hello! I also have spine lesions – my last MRI showed them on every section of my c-spine (apart from c4 who thus far has managed to wear a teflon coat) , two in my t-spine (t-11 and t-12) and one on my brain stem. And it seems my brain is a bit like Swiss cheese with holes and Dawson’s fingers galore. This all came as a mega shock to me last year when I was diagnosed as I have had nothing worse than a months numb toes and a few days tingly groin (caused by pesky t-11 who showed us as active on the MRI) . Like you I feared what spine lesions would mean for longer term prognosis and the possibility of a diagnosis of PPMS. It’s one of the reasons I embraced my RRMS diagnosis with gusto and strove to jump both feet first into lemtrada (I received round 1 in August). My body has been doing an admirable job at re-routing messages around the MS road blocks the lesions create – so much so that I was oblivious to what was going on. Makes me determined to preserve as much neural reserve as possible (especially in the spine) by doing whatever it takes to stop further damage.

A year on and nothing new to report. Something I’m very grateful for. I get a new MRI in June ahead of R 2 so will see then whether I’ve managed to stop the flow of silent damage.

Good luck with your choices. Stay strong and be kind to yourself

K x


anxious123
1 year ago

Thanks @katy79 your experience seems very encouraging. I like you am ready to fight ms if or rather when diagnosed…i have researched dmds and am torn between tech and lem. Concerned neuro will want me to try one if the lesser treatments first…did you have much of an arguement to get it and what was your experience of side effects time off work. Ability to look after any children in immediate weeks after?
Also if lem fails do you have option of another dmd?


katy79
1 year ago

Hi @anxious123

I made it clear from the outset that I wanted Lem, understood the risks and what Lem offered as compared to other treatments and that I was able to make an informed risk based decision. My neuro referred to this in his notes confirming the treatment so I think it was a factor (with thanks to @tracyd for much of the groundwork in this approach!)

Even with a willing neuro you need to meet the NICE diagnostic criteria of “active” RRMS (meaning a diagnosis of RRMS with evidence of two attacks in two years). My only clearly MS related symptoms were my numb toes. These had prompted the initial MRI in March 2016 which showed both new (active) and old lesions in multiple places – allowing me to meet the RRMS diagnosis criteria off of one MRI and a single relapse. In order to tick the “active” RRMS box I had to wait three months for a second scan (conveniently the referral time between being seen privately initially and moving to my Neuros NHS books for treatment). This scan in June showed one new lesion on my brain (hooray!) (there had been no new symptoms) and my neuro used this to confirm a diagnosis of active RRMS. He also considered that an episode on vertigo in July 2015 (diagnosed and successfully treated as BPPV (inner ear vertigo)) may have been evidence of an earlier relapse given my brain stem lesion and added this to my notes as further supporting evidence. I received Lem in August.

So my understanding is that there are three things that go to receiving Lemas a first round treatment (I) you need to demonstrate you want and understand it; (ii) you need a progressive neuro willing to treat aggressively and find the evidence to help you; (iii) meet the NICE criteria.

As for receiving Lem, I had a super easy experience. Nothing worse than a mild headache and rash. I went out for a walk on my first day home and was climbing the walls with boredom during my two weeks convelescence from work (taken to avoid the London commute while my immune system started to re-boot) – and was back out running in that time. No infusion reactions, infections or symptom flare ups to speak of.

If you are considering Lem then I recommend the lemtrada, alemtuzumab (campath) treatment for MS in the U.K. Facebook group. Lots of people who are thinking about, receiving or have had lemtrada so a good place to get a spread of experiences (good and bad)

K x


katy79
1 year ago

Ps – if Lem fails a sensible neuro will find something else. I asked this very question.

– possibly a further round of Lem (prescribed on compassionate grounds as NICE only covers two rounds)

– possibly another one of the existing treatments (although my nurse mentioned pml risk may be slightly increased if you are jcv + as a result of the depleted immune system – this would just be monitored)

– possibly stem cell – one of the criteria for being treated on the compassionate/ trial programme in the U.K. Is to have failed on Lem or tysabri

– possibly one of the new kids on the block – e.g. Ovrelizumab etc.

Basically, I was told that my neuro wouldn’t stop looking for a possibility whilst my MS was active.

K x


anxious123
1 year ago

Thanks @katy79 definately given me things to think about. I have a similar job to you with a similar commute so nice to see your doing well


tracyd
1 year ago

@anxious123
The groundwork @katy79 mentions is one I kept in Word document format as it’s more easy to read, drop me a PM with an email address and I’ll fire it across to you. I also have a ‘lem-the side effects – and what is lem and what is just the side effects of the rest of the infusion ‘cocktail’ …’ document as well if you want that xx

My experience with Lemtrada is a fully documented public record and not that I’m counting but I’m currently 9 days away from officially being 1 year since round 2 completed.

The logic and reasons why I chose and fought for lemtrada right from the start are all detailed in there.

My blog details from 33 days before my Lemtrada start date and through the whole journey so far. Please take a read at:

http://www.tracyslemtradajourney.co.uk

Year 1 of the blog is also available on Amazon as an easy to read eBook for Β£1.99 with all proceeds coming directly here to the nice people at SHIFTMS as it’s a registered charity.

https://www.amazon.co.uk/dp/B01GE1V00M

Post Comment

You must be logged in to reply to this topic.