Neuro letter

[mustard]

I just got a letter from the neurologist regarding the MRI I had recently. It says "your scan shows relatively minor change since the last one although I think there is a new enhancing lesion so we could potentially proceed with Tysabri. We can discuss this further when you return to clinic"

I do really appreciate him taking the time to write so that I'm not wondering about the results until the appt on 23rd, but now my head is spinning with it, I am over analysing the letter big time I think.

 

What does he mean 'relatively minor change' - does this mean it's less than expected with the symptoms I present? How can he 'think' there is a new enhancing lesion, surely there either is or isn't? What does potentially being able to proceed with Tysabri mean? Can I or can't it?!

 

I am trying to see it as a good thing - not too many lesions but just enough to be eligble for Tysabri. But at the same time I'm feeling a bit like well were all these 'relapses' really relapses or am I just making a big fuss over nothing? I guess in 1.5years some could have healed and not be showing?

 

Sorry for a bit of a nothing-y post, I'm in a weird place at the moment (the kind of place where I burst in to tears in Sainsburys for no apparent reason) and I can't get hold of anyone to talk to about this 'in real life' so just needed to vent really.

[Bigbird]

Vent away. Why not? Good to get it out of your system.

 

The lesions aren't always clear to see and differentiate. Sometimes it's not clear when they are small and can only be confirmed if you have another scan later.

 

I would imagine he means you are suitable for tysabri but he may be thinking that the benefits aren't good enough. Or he could br thinking along other lines of treatment and support.

 

Don't panic. It'll all be clear at the consultation. Ask lots of questions to get the answers you want and need.

 

Keep on trucking as they say

BB x

[Scully]

Hello Mustard,

 

It is a good thing for your Neuro to write with the results of your scan.....even if they do fling everything in the air!

 

To me it sounded like there isn't much change ( good thing ) not sure if replapse(s) = lesions or vice versa? But he still seems relatively keen to discuss the Tysabri option with you as he thinks that one lesion is enhanced. I was told this once, and my Neuro just said, well it's a bit brighter than it was before so is probably causing a few problems.

 

You have time before your appointment to take stock as it were. You've done your research into Tysabri so you know the score there, he could well still be thinking Tysabri, or something else.

 

I doubt you've been making a fuss over nothing. You've had some really bad episodes, and most know how they are debilitating.

 

Glad you vented here. We are lucky to have the forum to do so, it's one of the reasons why it's at our disposal.

 

Scully

x

[happyandy]

Hello Mustard,

 

It read to me that your Neuro seems to be trying to make your results match the criteria so that he can offer you Tysabri.

 

There apparently no relation to the amount of lesion and physical disability. Some Neuros argue there is too much reliance on MRI's.

 

Are you relapsing frequently and are you making a reasonable recovery afterwards ?

 

 

Andy

[mustard]

Andy - yes I did wonder if that could be his reasoning for 'I think there is a new enhancing lesion' because he wants me to be able to have Tysabri. This letter after all will stay on my notes as his assessment of the MRI no doubt.

I'm relapsing about every 4-5months, and stayed at that rate whilst on copaxone. I seem to make a kind of half way recovery each time with each relapse leaving residual symptoms.

I've also been told the same thing by the neuro about the amount of lesions not necessarily correlating to the level of disability, but it had slipped my mind in the whirlwind of all this, so thank you for reminding me of that.

 

Thanks everyone for your words, it helps to hear other thoughts on it and I feel much calmer now. The boyfriend just got home so will see what he makes of it too, but I am glad to have been calmer by the time I discuss it with him as I've been very unfair to him lately and no doubt would have snapped his head off about this too for some stupid reason.

 

Thanks again :-)

 

Mustard x

Edited 6 Mar 2012, 7:58 pm by mustard

[Hezza]

Hi Mustard,

Glad to hear that you're feeling a bit calmer now. My thought, too, was that your Neuro was possibly leaving the Tysabri option open to you with his words ready for discussion when he sees you in April.

 

I'm sure you haven't been making a fuss about nothing. My most recent brain MRI showed no new lesions since my previous scan 4 years ago but there's no doubt that I have had relapses in the meantime. Remember, too, that there are a small number of patients who receive a confirmed MS DX but have no visible lesions on their scans so the scans are not the only indicator.

 

Take care x

[Christina]

Hello Mustard

 

Hmmm, I can see why that letter threw you a bit. I do agree though that the door to Tysabri is still open by the sound of it, which is good.

 

I was wondering, as I often do, whether Copaxone just might have been keeping new lesions from appearing, so it may have been working behind the scenes? Just a thought!

 

When I was assessed for Tysabri about 2 years ago, I had a letter from my neuro telling me I didn't fit the criteria as I had no fresh lesions. They couldn't be sure about the spinal cord, as they are notoriously difficult to see apparently but although there was a 'new' brain lesion compared to the previous MRI, it wasn't new enough. I was right flummoxed because, like you I'd been having relapse after relapse, and I suddenly began to question my own judgement and thought the neuro might think I'd been imagining it all. He didn't by the way, but for a while I felt like a fraud but also very confused. How could I be experiencing so many disabling symptoms, yet nothing showing up on the scan!

 

So, I see where you're coming from and why this letter stirred you up. Fingers crossed for your next appt hon.

Chris xx

Edited 7 Mar 2012, 9:15 am by Christina

[mustard]

I was right flummoxed because, like you I'd been having relapse after relapse, and I suddenly began to question my own judgement and thought the neuro might think I'd been imagining it all. He didn't by the way, but for a while I felt like a fraud but also very confused. How could I be experiencing so many disabling symptoms, yet nothing showing up on the scan!<br style="color: rgb(71, 71, 71); line-height: 19px; ">

That is exactly it Chris, exactly.

 

I know that lesions can still be 'healed' but causing symptoms, but yes it's that whole way of thinking. It's the very reason that they can be healed and no longer show on scans that makes it seem crazy that they rely on the results so much to let people have tysabri. The lesion on my spine, I felt happen. It was during the first relapse, before I knew what was happening when I thought I had an ear infection. I woke up in the night feeling like I was being stabbed between the shoulder blades - over the coming days I went slowly numb down my left side. The spinal MRI showed a lesion in that exact spot - when the neuro told me there was a lesion on the spine I was able to point to him where it was before he told me. The follow up scan they told me that lesion had totally cleared up with no signs of it on the scan anymore, yet I am still in pain with it every day. They also showed me the two brain scans side by side and some of the lesions from the first scan were still visible but dark and some were totally 'gone'.

When I had the first relapse the neuros in the hospital (one of which is now one of my neuros - I see either one of two) told me it was definitely an isolated event because they'd be able to see if it had happened before, he also told me I'd be back to normal within a year. I still feel quite angry with him for that to be honest because it is total crap, and he is a MS specialist so also knew it was crap! (eta- this was all nearly 2yrs ago btw)

 

Sorry, slightly rambled off there - I guess my point is that too much weight is sometimes put in to MRI's, and that I don't really understand it all having been told different things by the same consultant, but that either way it is all very confusing and that sometimes even we ourselves put too much weight on MRIs.

 

x

Edited 7 Mar 2012, 11:48 pm by mustard

[Christina]

You're right there Mustard! I think this disease is very confusing and flummoxing (I like that word) even for the Neurologists, it behaves very randomly from day to day, even hour to hour. My Neuro told me he speaks to other neuros who don't strictly adhere to the criteria for prescribing Tysabri, these days. Perhaps he will relax his practice too in the future.

Chris x

[mustard]

Chris,

I just spoke to the MS nurse and asked her about the letter, she said reading between the lines as she is experienced at doing with consultants letters, it looks like there is a small amount of activity so not enough that he'd be strongly recommending tysabri but enough for be to be eligible and it be my choice. She's going to try and book me in for the first infusion for after I see the neuro on 23rd! She also confirmed 100% that I am JC negative. Also, interestingly, she said that most people are exposed to it as children so if you don't have it as an adult it is highly unusual to get it - about 1%. So there's one thing to be pleased about that I wasn't exposed to as a kid (not having had chicken pox is a bit of a pain!).

 

I also said to her about the criteria for tysabri seeming a bit weird that an active lesion has to be present because then surely it could be a matter of timing. She said that lesions stay 'active' looking for quite a while so it's not like one week it'd be there and the next not. I also asked her about lesions disapearing from scans altogether once 'healed' she explained it that they can go away all together but still be causing symptoms because the scan only shows the myelin not the nerves themselves. So if there has been damage done, the 'scar' (which is the part the scan shows) can heal but the nerve might rewire itself a bit differently thus still causing residual symptoms that don't show on the scan.

 

I now feel a bit less flumoxed, a bit less and a bit more . MS nurse saves the day once again

 

Sure you knew that already, but thought I'd share anyway :-)

 

Mustard x

Edited 8 Mar 2012, 12:35 pm by mustard

[Scully]

Oh well done Mustard,

 

Makes perfect sense now.

 

What would we do without these MS Nurses huh?

 

Scully

x

[happyandy]

Hi Mustard

 

A lesion that I had on my spinal chord disappeared when I had my second scan but Ive been left with the residuals ever since.

 

Whats the chicken pox connection ? Ive not had it either

 

Andy

[mustard]

No connection Andy, was just comparing it. In that I always wish that I had have been exposed to chicken pox as a kid as now it is a bit of a pain not having had it as an adult, but with the JC virus, is the opposite as I am glad I never was exposed to it as a kid.

[Christina]

Maybe you have had chicken pox Mustard? I say that, as lots think they haven't been exposed but the illness was so mild they never noticed they had it.

 

Chris xxx