Last reply 8 years ago
New here :-) and confused…

Hi there!Im new here,just looking for other ppls experiences. I was diagnosed in Nov 2010. I have been told I have rapidly evolving relapse remission, but 2nd MRI showed no enhancing lesions (Im on avonex).But I dont FEEL any better, feel worse everyday?! So how do i tell whats a relapse?!

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kitty24
8 years ago

300 word limit wasn’t enough for me 😉 haha!! I find it very hard to tell whats a relapse and what isnt. Since being diagnosed I haven’t felt any improvement at all, I actually have felt steadily worse since Nov. The diagnosis itself was bolt out of the blue, I was diagnosed because of optic neuritis but otherwise felt OK, just odd wee weeks of strange sensations etc that I never put down to anything. I nearly lost my sight, but thank goodness it came back!! But should I not be feeling better since my 2nd MRI showed no enhancing lesions???? help 🙁 x


mawson
8 years ago

Hi there and welcome. Giving a very bad answer so sorry in advance, thing is everyone is different after 8 years am still not sure what a relapse feels like, just I feel a bit off! Think it does settle when you come to terms with so not so stressed and worried. Ashamed as did take me a very long time. Started with optic neuritis too with me, it was diagnosed as a virus untill a few months later when had bad pins and needle in arms and legs and kept vomitting! Nice. Hope it settles and that you start to feel better soon and it starts to settle. Sue x


kitty24
8 years ago

Awk Sue….hopefully it just comes with time then after u get used to ur own symptoms and stuff? Im not too sure just what Im supposed to be recording as a “relapse”…its very confusing huh?! Thanks so much for ur reply…xox


gav
8 years ago

I had the ‘rapidly evolving’ badge when I was diagnosed, its worth asking your neuro what they mean when they say rapidly evolving.

Just because there’s no new lesions doesn’t mean that things are going to be any better unfortunatly, on the bright side at least there’s no new damage.

For me, a relapse is when I have a sudden onset of new symptoms or an ‘old friend’ come back to say hello again, but, much like life, it is different for everyone.

Have you been offered any other treatment options? It may be worth asking if you can be put onto Tysabri?

Sorry I can’t be anymore help, if you want to chat then send me a message =)
Gav


Anonymous
8 years ago

How long have you been on Avonex hun? My first year post-diagnosis was totally rubbish too, it seemed like it was one thing after another! It took about a year for the Avonex to really settle in and become effective, my MS nurse said that’s actually quite common with people who have a more active form of the disease. Depends how long you’ve been on the treatment, but maybe just give it a few months more and see how you’re feeling?

Similarly to Gav, feel free to message me if you want to chat xx


Anonymous
8 years ago

How long have you been on Avonex hun? My first year post-diagnosis was totally rubbish too, it seemed like it was one thing after another! It took about a year for the Avonex to really settle in and become effective, my MS nurse said that’s actually quite common with people who have a more active form of the disease. Depends how long you’ve been on the treatment, but maybe just give it a few months more and see how you’re feeling?

Similarly to Gav, feel free to message me if you want to chat xx


Anonymous
8 years ago

Post fail… 😉


t
8 years ago

There is a very good explanation of what a relapse is here:

http://multiple-sclerosis-research.blogspot.com/2011/07/what-is-relapse.html

It can still be hard to tell, especially with the more “fuzzy” type of symptoms but hope it helps a little bit!


kitty24
8 years ago

Oh Im so glad I joined here!! So lovely to finally talk to other ppl with ms. My Aunt has it but its gr8 to chat to ppl with the same type as me.
Gav- I had kinda naively thought I would be ok if there were no new lesions 🙁 I was thinking of asking about tysabri. They had mentioned it to me as first line instead of starting the avonex, but I chose myself to go on the avonex first to see if it worked cause it was the lesser of two evils in my eyes! But its maybe worth re-visiting…

Rachie- Oh really? Maybe its going to take a while to kick in then? My neurologist is v. well renowned in MS field in NI here, but he difficult man to talk to (is a bit of an eccentric lol)…but maybe chat to MS nurse when she back off leave and c what she thinks about why Im feeling crap but avonex apparently working!!

T- thanks very much, Im gonna have a wee look at the link now!

Thanks for the replies, it rly is lovely to be able to chat this stuff out!! x


t
8 years ago

Kitty_24 – the most useful information I’ve had since being diagnosed has been through talking to other people. That’s why it’s great that there’s communities like this!

In terms of lesions – I’ve been told that it is possible for lesions to be occurring deeper than what can be detected by MRIs, which is why you can get symptoms but “no lesions”. Likewise, it is also possible to get lesions with no symptoms. That is what is known as sub-clinical activity.

Generally, guidelines for treatment work on clinical activity i.e. presenting symptoms, rather than number of lesions only. That’s what I was told by a top neuro!


fab
8 years ago

said:

Kitty, my MS is also “rapidly evolving” because i get relapses very often and then settle leaving disability. In february 2010 i started using a walking stick and by october 2010 i started with a frame. 1 year i had 2 mayor disabiliting relapses and remisions werent complete.


gav
8 years ago

On the subject of MRI lesions, in reality the number you have on your MRI means very little, its all about where they’re located. I personally have an ‘innumerable number’ (so says my MS Nurse) of lesions on my MRI.

Living with MS is just about fighting for as long as you’re able to.


mawson
8 years ago

When after about 5 years I had a second MRI most of my lesions were on my brian (partner said not surprised, does think he’s funny). I was a bit surprised as my main problems are in my calves, though they’d be down my spine as luckily upper body ok.


kitty24
8 years ago

T- thanks, thats really helpful! Its good to know Im not the only one with no new lesions but lots of new symptoms!! Must talk that one through with nurse then.

Fab- so sorry to hear you have the same type and it sounds like uve had a really hard time of it 🙁 r u on any DMT?

thehappycovv- I guess ur right…just gotta keep trying to move fwds I suppose! Hard aul battle tho eh?!

Mawson- From what everyone is saying, and from what my first neurologist said…the MRI result actually means precious little!

Guys…Im wanting to talk to them about maybe thinking about tysabri…but does the criteria not state u need to have enhancing lesions on MRI?

Thanks again everyone 🙂 x


fab
8 years ago

im taking tysabri and ive not had relapses in 7 months. fingers crossed! ill be relapse free for long time.
i was for 6 years relapse free with no treatment. 2009 my MS got crazy and i started with copaxone, didnt work and now i am on tysabri


kitty24
8 years ago

Its so up and down really isnt it, I still can’t get my head around it all!! It seems to be v. different for each person!! Im glad the tysabri is helping u tho Fab x


daisy
8 years ago

hi kitty_24 – just to say that I have been on avonex for ten months now and have been feeling pretty rough on it – I lost my sight in one eye a few years ago due to optic neuritis and have had repeated attacks of it during relapses, I’m very scared of losing my sight altogether and so anything that might prevent relapses to some extent has to be worth a try, but on a day-to-day basis I’ve not felt at all well on the avonex. These are hard decisions to make, so no wonder we get confused sometimes – happy to chat any time if it helps D x


kitty24
8 years ago

Daisy….so sory to hear you have lost sight in one eye, thats horrible. Its not great having to jab urself every week nevermind still feeling crap sure its not 🙁 x


mawson
8 years ago

Came off Rebif about a year ago, my choice, but nurse said your body can over time develop antibodies to the medication! Had been on it for about 6 years, love the fact feel great and don’t have bruises all over my legs anymore!


kitty24
8 years ago

Thats interesting isnt it, that u feel better off the DMT!! Im going to stick with Avonex for at least the yr and c how i get on… x


mawson
8 years ago

Could be due to a number of factors, now work from home and no lomger studying, so not wearing myself out. Still pleased I came off the DMT x

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