Last reply 1 year ago
New Lesions!!!!!!!

I have spent the last couple of weeks trying to get my head around this but I just got the results back from my MRI in March and it’s showing two new lesions – left cerebral peduncle and left middle cerebellar peduncle – no idea what that means?! I just can’t believe this! I will have been diagnosed two years next month but since then it has just been setbacks constantly! In March I was also told my eyes won’t get any better now, this almost broke me but I picked myself up and just got on with it but now this!!!! I have made so many changes to everything in the last 6 months – I am now vegetarian, cut out junk from my diet, cut down my workings hours by 20%, getting exercise (I was even at a JazTrampoline class last night – my legs now resemble my brain in that they are covered in bruises but I have it a go lol). I just don’t know really what else I can do? I am on Tysabri as well, which I will continue with. I will have another MRI in about 6 months to see what’s going on.

I just feel like I keep trying and getting no where! I just needed to have a moan – sorry! I just don’t have anyone I can talk to about this stuff – so thank you for listening, I really appreciate you all and this site!

Avril x

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stumbler
1 year ago

@avrilt , two new lesions doesn’t sound good, but “normal” people also acquire lesions as part and parcel of the ageing process.

The question really is whether your Consultant is concerned about the scan results. And, whether Tysabri is the right DMT for you. Have they expressed any concern?

Otherwise, keep on doing what you’re doing. The healthier you are, the better.


red-suzuki
1 year ago

Well, sorry, no obvious advice, don’t know how to put reply into words of comfort @avrilt , stumbler has hit the nail right on the head….Sounds like you are doing all you can, so give yourself a break when & if you can….Keep smiling & keep going on.


tracyd
1 year ago

@avrilt
Have you asked your consultant to put you on an effective DMT ? Tysabri isn’t working for you if you have new lesions

The diet and stuff helps with general health and wellbeing but you need to be on a more effective medication


potter
1 year ago

Some people have to switch treatments a couple of times before they find something that works with their body. Potter


Anonymous
1 year ago

Thanks for your replies! @stumbler I’m only 36 lol I trust my Neuro completely and she is happy for me to continue for now and see what the next scan shows, it suits me for now as well. Tysabri has been good for me in that I haven’t had any major side effects. But I will do some research myself I think to see what else there may be @tracyd and @potter I guess I had hoped this would work. I was lead to believe this was one of the most effective treatments currently and is supposed to be 70% effective? It was just such a let down! I was really hopeful I might get a break from MS for a while – sounds stupid I know. But since diagnosis it has been constant. I tell you my life is absolutely not how I thought or hoped it would be. Things have been stressing me out recently and I know that ain’t good so won’t be helping.

I always smile @red-suzuki I just needed to say it out loud and this is the only place I can do that. I am useless I always tell people everything is ok and I’m doing well lol

Thank you all – you are all wonderful xxxx


daniel2025
1 year ago

Different people take things in different ways. Not to lower anything you are going though just try to think there is always someone worser off and unfortunately the events in Manchester recently has proved that I could not imagine the pain of losing a child.

Just think to yourself I am going to beat this ms can do its worst and it won’t win I will be beating it. If out else anytime you feel down think you yourself at least I’m still hot. Never mind you been 36 I don’t think you look a day over 25. I would try not to worry too much yet as your neurologist us not worried just yet. Try to get on with things stay as healthy as possible and don’t let the two newcomers in your brain stop you from living.

If you stop living your life the ms has won and no one wants that to happen to me, you or anybody else who has ms.


Anonymous
1 year ago

Thanks @daniel2025 yeah I do need a kick up the butt. I am very fortunate compared to a lot of others, sorry just needed to vent some frustration and here is the only place to do that as I don’t have anyone to talk to about MS stuff. Thanks for the confidence boost 😊

I know a few people who got caught up in the events in Manchester, they have been some of the lucky ones. It is scary that these kind of things are happening and my heart goes to all those affected.


red-suzuki
1 year ago

Totally agree @avrilt…..My heart & feelings goes out to involved & to the folk of Manchester….There is honestly no rhyme or reason for what happened….keep on keeping on, with the butt kicking.


Anonymous
1 year ago

Thank you @red-suzuki I will just keep getting on with it – my new lesions are now part of me I guess, just gonna find a way to get on with them lol

Did you make it back without melting then? x


daniel2025
1 year ago

@avrilt no problem. In regards to the Manchester incident it has shocked me to my core. I have been in that arena a few times over the years I even went on holiday there and stayed in the travellodge round the corner from the arena. I even went and watched a film in the cinema inside the print works building. It could have happened any time. I think Manchester is a fantastic city and feel so sorry for the victims. And there is no need for any of this. I hope that the arena puts a memorial plaque in the foyer of the building with the victims names on it


red-suzuki
1 year ago

Apologies for late reply…Yes @avrilt made it back ok through the oven of the A1……but in the annals of ‘Dohism’…(similar to Darwinism, but with less animals), this must be up there near the top….went, over ok, sat in studio & dis stuff ok, came back ok….so far ok….Message a 8.30 ish last night from friends wife…’ just been in the studio to do some things & I think you may have left your laptop behind’..LOL…so have been over & have just come back to pick laptop up…..I blame the weather, apart from screwing up the legs, it has got to the grey matter, total forgetfulness (whats left of the grey matter, that is)….heat you see does strange things.


Anonymous
1 year ago

LOL – red-suzuki thats good. Yip another hot one here today too, although Thunder storms tomorrow I am told so of course it is a friends birthday BBQ – oh well at least there will be lots of wine! Think that will be a good way to forget about my new lesions lol Forgetfullness is a nighmare and the brain fog is the worst! But I reckon that can be whole threat on its own! It can make work a nightmare, I think people think I am a bit of an airhead at times – but I can’t help it! Anyway, studio? whatever it is I am sure it is fun!

Have a good day x


daniel2025
1 year ago

Hopefully you don’t have to walk up a bank to get there Edinburgh is full of them. I think Edinburgh also takes the prize of strange pub name lol 😂 the standing order lol 😂 I think they most think there a bank. Too bad the toilet location is not very ms friendly.


Anonymous
1 year ago

Hey @daniel2025 lol – you do know Edinburgh well! It is the festival I am dreading, you can hardly move on the Royal Mile! Not good when your vision is not 100% and you kinda waddle lol

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