Forum

diagnosis

Hi,

I went to see the neurologist and my diagnosis hasn't changed from probable ms because my symtoms have not changed and i haven't deteriated.but when i asked could it be anything else she said no , its ms but she needs a changed mri or another episode to confirm it.So where does this leave me? i'm confused.

lynn

Hi Lynn,

"Probable MS" is a diagnosis in itself.  There are only four possible ways it can come out:

  • You don't have MS
  • Possible MS
  • Probable MS
  • Confirmed diagnosis

Some people with a "possible" diagnosis do eventually present with enough evidence to confirm the diagnosis, and even more with "probable" - but still not everybody.

For a confirmed diagnosis, it has to be firmly established that it was more than just a one-off.  Because you haven't deteriorated and/or had further attacks, that still isn't true in your case.

I'm afraid it's just a case of wait and see.  You might be one of the lucky ones, who never get further attacks or progression.  In that case, it's never called MS (doesn't satisfy the "multiple" part), and you may never know what sparked the single, isolated episode.

Alternatively, you may have further attacks or MRI evidence weeks, months or even years later, and only at that time will it be possible to confirm an MS diagnosis.

What does the neuro say?  Does she want to scan again in six months or a year, maybe? (I got confirmed "probable to definite" after a second scan, six months later).

Or does she recommend you just try to live your life, but report any signs of a new episode?

Tina

hi Tina,

my neuro says that she'll see me in 12 months or sooner if any change.They won't do another mri until i have further symptoms.My symptoms from my first episode haven't gone yet. I had 2 to 3 lesions on left frontal lobe, an area of activity in neck area and o bands present in csf. i thought brisk responses for my reflexes were good?

Things went wrong last summer about a week after having a rabies jab.I don't think I'll have a booster when it due.To me that feels like the trigger but its never been confirmed and they've ruled out gbs.

Did you have more symptoms for them to do a second scan?

I'm confused in that she says its ms but can't say for definate, i understand the mcdonald criterea but I'm told at this stage it can't be anything else, I can't remember all the tests i have had. i know they checked for vitamin deficiences lymes, std's ,thyroid, etc I felt like a pin cushion.

thanks,

lynn

I'm assuming that your neuro knows about the rabies jab? If she does and isn't concerned, then I guess it can't be related. If she doesn't, then she really should be told (and before you have a booster). Please note, I do not know of any reason why it would trigger demyelination, but it seems to be rather unfortunate timing, as you said.

 

As Tina has already said, to be diagnosed with MS, you need to show that there has been more than one attack. This means either a new relapse if you have RRMS (relapsing remitting MS) or at least a year of progression in symptoms if you have PPMS (primary progressive MS). They really can't budge from these rules even if they "know" it's MS because, although it seems unlikely, some people do just have that one attack and never have another.

 

It is possible to demonstrate a new attack by having a new lesion on MRI, even if the patient has no new symptoms. This is because a lot of MS lesions are what is called "clinically silent" - in other words, they don't cause clinically observable symptoms or signs. But a new lesion irrefutably means new activity, i.e. a new attack.

 

I don't know why your neuro won't do another MRI (budgets???), but I guess ultimately it comes down to the fact that MS just isn't an emergency and even if you were to be diagnosed following a new MRI, you wouldn't be eligible for DMDs because you wouldn't have had two "clinically significant" relapses in two years. So, in her mind at least, there's no rush.

 

Frustrating as hell for you, but she's taking the sensible approach.

Sorry!

Karen x