More advice needed in limbo land please.

Hi again,

I have just had an incident of CIS which may or may not be MS, and I had a possible episode last year.

I have just received a copy of a letter sent to my GP from my neurologist, and I would like a bit of advice.

He states in it " She has suffered a clinically isolated syndrome. The episode a year ago might be relevant which would suggest that she was actually suffering from MS. She would currently not qualify disease modifying treatment." Then he says. “Whilst obtaining an MRIcan after six months could be used to formally establish a definite diagnosis of MS this would not change the management if she remained free of symptoms.”

I personally would like to push for an MRI scan, as this will help to confirm a diagnosis and take me out of Limboland, or determine if it is less likely I have MS.

I understand that the nurologist is saying that I either have another episode or I don’t, so may as well wait to see if I do or not.

I would like to hear people’s opinions whether I Should push for an MRI or if it would not make a differnce anyway if I have one, and also answer if possible any of the questions below.

If he thinks it is actually MS wouldnt a diagnoses of MS as soon as it is possible be better?

If I have a confirmed diagnosis would I have better access to an MS nurse and an MS specialists.

If I have a confirmed diagnosis if my symptoms were to worsen would I have better access to help and advice from nurses and MS specialists , or would it just be the same?

Also do most MS patients take drugs that slow the progression of MS?

Again thanks in advance for any help, would be good just to hear other peoles opinions about this.


Hi Soph,
I have a dx but to be honest it doesn’t make much of a difference. Yes I have an ms nurse but she only wants to be contacted if in extreme need.
In regards to DMDs not everyone is prescribed them, my neuro only recommended 5000 vit d.
The only comfort of a dx is I know what’s wrong and it’s not all in my imagination, but it is all in my head!