Hi, I would really value any thoughts or suggestions here (actually, what I really want is a magic wand, or failing that one of those “and then I woke up and it was all a dream” moments!)
So - my 17 yr old daughter (perfect, funny, clever, loving, looking forward to a fabulous future, just like all lucky 17 yr olds) was ill 3 yrs ago with what was initially described as ADEM, even though we suspected it wasn’t that, as there were too many differences btwn that and MS. Last year she had a bout of ON, and she has had a number of signs and symptoms since the ADEM (including just yesterday a shooting tingling pain in her neck when she moved her hand.) She also has overwhelming fatigue. Her paediatric neurologist has been seeing her every 6 months or so, and recently asked for another MRI scan. This has shown that there are new areas of demyelination.
She has never been on any medication.
My daughter ALSO has symptoms that seems to suggest some arthritic condition (she has very achy joints and sometimes very severe back pain (right at the point of the lumbar puncture she had 3 yrs ago - the pain she felt then has never gone away). Her joint pain is on-going and causes her distress on a daily basis. She has been referred to an arthritis consultant for this.
I suppose my questions are - is arthritis or joint pain something to expect with MS? Or is there something else going on altogether? And more pressingly, should I ask for my daughter to see a specialist MS consultant? I’m thinking of Dr Wassmer in Birmingham (who previously saw my daughter and told us she hadn’t had ADEM but a CIS).
If I’m honest, I’m desperatelay reluctant for my daughter to be given a diagnoss, as she would find this so traumatic (hence my reluctance to ask for a referral). BUT - does she need medication, or some more pro-active treatment (our consultant is pretty laid-back about all this)?
Help! I am floundering through this and can’t see clearly what I should be doing. Any suggestions gratefully received!