Thoughts and advice please!

My thirty-one year old daughter has been unwell for some time now with various symptoms ranging from pins and needles, weakness and changed sensations in limbs, fatigue and cognitive issues. Her dad has RRMS and her uncle has secondary progressive MS. Last Christmas we arranged for her to be seen by a neurologist who referred her for an MRI and as a result of the scans she was referred to an MS specialist. Unfortunately he was unable to access the MRI scans at the time but has since reviewed them and she had further scans yesterday. Today she received a copy of the letter that has been sent to her GP regarding his review of the original scan together with a consultant neuroradiologist. He states that numerous lesions in the brain and cervical spine are strongly suspicious of demyelination/MS but no evidence of gadolinium enhancement in the brain or cord. He goes on to say that he could not therefore define dissemination in time in terms of the lesions in the absence of any gadolinium enhancement. He plans to compare these scans with the ones she had taken yesterday and then see her in clinic. We are confused by this and don’t really understand what it all means, it is alarming to say the least to receive such letters out of the blue filled with medical jargon, particularly when she has no follow up appointment as yet to discuss this. Does she have MS? As parents this is our worst nightmare, my husband was diagnosed eight years ago so I have first-hand experience of how debilitating this disease can be. I would really appreciate any advice or an explanation of what this all means if anyone is able to help please. Thank you!

hi shaunagh,

the protocol to diagnosing ms is that evidence of more than one episode is needed which isn’t good when we are told that it’s important to start treatment as soon as possible.

anyway the neuro is obviously aware of this hence the second scan.

with a bit of luck you should have answers soon.

the neuro will probably arrange an appointment to discuss the results.

your gp will probably hear before you.

your daughter will be offered a disease modifying treatment and should be allocated an ms nurse.

these are positive things so try to stop worrying.

try to make sure that your daughter isn’t stressed too.

carole x

hi again

your daughter sounds like a very positive person.

her relationship with her partner sounds strong.

i wish them well and hope they have a bonnie, healthy baby.

carole x