Forum

Can anyone help me understand?

Hi Guys,

I finally recieved my letter from neuro to GP confirming my dx. It reads like this:

“A recent MRI of her head showed one extra area of white matter abnormalitity close to the right occipital horn. The brain stem lesion however does not show enhancment anymore. This is therefore likley to be a demyelinating disease and with the episode of virtigo, sensory symptoms and clumsiness, there might be 3 clinical episodes and therefore should be diagnosed with rrms.”

My question is this - does this mean clinically talking i have had 3 relapases or 1 relapse with lots of symptoms? All the symptoms came on at the same time - requiring hospital stay. I just want clarification so i can try to understand the course my MS is taking.

The answers you guys give people in this forum are exceptional and i hope one ay when i understand a lot more to be able to help others the way you all do. Thanks in advance

Laura xx

Hi Laura

“Clinical episode”=“relapse”, so he’s saying there have been (probably) three relapses, rather than three lots of symptoms.

This can prove important in deciding which drugs you qualify for.

Usually, two episodes (relapses) in two years is the threshold for DMDs, so depending how close together your three episodes were spaced, you may well qualify.

Hope this helps,

Tina

Hi Tina,

Thanks for replying so fast! My three episodes all happened within 3 days of each other which is what i find confusing - i thought relapses had to have a month between new symptoms or have i got that really wrong?

He does mention futher in the letter that he thinks i will be eligble for DMD’s an my MS nurse agreed just want to check with local MS specialist neuro. I just cant get my head round the fact ive had 3 relapses it fet like one long relapse with multiple symptoms. It’s very confusing or maybe im a bit slow! x

I think he’s saying that one lesion highlights with contrast, indicating that it is currently active. Another no longer does, indicating that this is older, and relates to a separate episode. Finally he seems to be saying there’s been a separate(?) (I don’t know how separate!) episode of vertigo, clumsiness and sensory symptoms, which he would take to be a third episode.

Is it possible you had an unexplained episode of clumsiness etc. on file from some time ago?

T.

x

I have had the sensory symptoms since may 2012, this being my first symptom and why i went to GP who then refered me to Neuro. Perhaps that with the 2 lesions then makes 3 relapses?! I wish the neuro-talk was easier to decode! x

Yep, I think that seems to explain it! He’s probably treating first trip to the doctor as a single “episode” - then the evidence of two lesions that don’t seem to be the same age - making three! I note he only says there might be three episodes - meaning there’s an element of speculation. But if he’s prepared to treat it as three, that goes in your favour, as there shouldn’t be any controversy about qualifying for meds.

Tina

x

I’m guessing that these results are from a second MRI. The new lesion is periventricular (the right occipital horn is the tip of the lateral ventricle nearest the right occipital lobe). The brain stem lesion counts as infratentorial and so you meet the McDonald space criterion of at least one lesion in at least two of four specified areas of the central nervous system. The fact that this second MRI shows a new lesion means that you have had a new attack, irrespective of whether or not you’ve had new symptoms (it’s not uncommon in MS to have “clinically silent” lesions, ie lesions that don’t cause noticeable symptoms). It also means that you meet the McDonald time criterion. Because you meet both criteria, it suggests RRMS. The problem you might run into is whether or not you are eligible for DMDs. The eligibility criteria include having had at least two clinically significant attacks in two years. From what you’ve said, it sounds more like you have only had the one. This is because it is the norm to count new symptoms as part of the same attack if they start within a month of the first symptom. Only the MS specialist will be able to tell you this though. Hth. Karen x

Yes i noticed that too, they don’t like to commit to desicions too often! Hopefully there shouldn’t be any problems accessing meds, will keep my fingers crossed. Although that ten means choosing one which won’t be easy! Seeing him again in May to discuss treatment. Thanks for your help its much needed!!

Laura x

Karen

Thanks - oh no so might not be eligible after all? My neuro isnt a specialist in MS either?

My MS nurse said that because my relapse was quite severe ( i was not able to walk at all & was in hospital for 5 nights) that this should be enough to qualify? She also said not to hold her to it as she doesn’t get the final say! I guess i just have to wait and see (again!)

laura x

I’m just going on what you said. If all your symptoms started during a period of a few days, then I can’t believe that an MS specialist neuro would count them as separate attacks because most attacks have more than one symptom and they tend to come on over a period of time. Since your relapse was bad, then it was definitely clinically significant, but whether or not the MS specialist signing the prescriptions is willing to count it as two is entirely at his discretion. If he just goes on what your neuro says, then I guess he’ll sign the prescriptions without much hassle. If you are having to see him for him to confirm your diagnosis and to evaluate your eligibility, then he might be more rigorous with the rules (and whatever the local ones are too, if there are any).

If you are going to see this MS specialist that the neuro and nurse talked about, definitely only had the one clinically significant attack and you are keen to start on DMDs, then I suggest you prepare an argument for getting them - maybe focus on the severity of the attack, point out any separation in time of symptoms starting, stress any residual symptoms, etc. You may not need it and everything goes very smoothly, but probably better not to be ushered out of his/her room without getting what you want and without having had a chance to persuade him/her otherwise.

Always better to be prepared and not need it than the opposite.

Kx

Great advice Karen thank you. As far as im aware i am not due to see the MS specialist, i think my neuro just wanted to confer with him. There part of the same hospital trust just on different sites. I would like to try the DMD’s purely as my relapse was so debelitating for me & hard for my children id try anything to reduce the chances of it happening again. Time will tell. Thanks again

Laura x

Hi Laura I was diagnosed last May with RRMS and like yourself I was unable to walk and stayed in hospital for 5 nights. I had a course of steroids via drip and tablet form to get me back on my feet and haven’t since had a relapse. I was offered the choice last October to start DMD treatment which I chose to do. I have since adapted well & have had very few problems with my MS I have reverted to relatively normal life. I think most MS specialists follow the two relapse rule but not always its worth enquiring about Charlotte x

Hi Charlotte,

Thanks for the advice, it’s so frustrating that things are out of my control - guess it’s a learning curve i’ll have to get used to.

Glad to hear you are doing well - long may it continue! x