Last reply 6 years ago
Doing well but need advice :-)

I was diagnosed in 2006 with relapsing remitting MS when I was 24 and literally didn’t know what was going on at the time as I temporarily lost vision in one eye, which recovered and I finished my studies. Since then there has been nothing significant until a couple of months ago when my right leg went numb and my thumb and index finger were also numb. My leg has recovered and my hand is a little worse making it difficult to sense and write although there is some sensation.

Since 2006 I’ve just carried on with my life as normal and got involved with yoga which has been great and in recent years I started dancing salsa and other latin dances which is a total passion of mine.

I guess this episode has reminded me that I am not invincible and that I need to continue to do all that is possible to keep this body of mine going for as long as possible.

I had an MRI scan last week and I guess I’m keen to discuss the results with the Neurologist although he said he will only see me if there is something of concern. To be honest I would like to know what has happened since the first MRI 16 years ago and surely I am entitled to some explanation? He has recommended a wait and see approach and no intervention with medication and I have another appointment booked in a year!

What is the general experience out there? I went to see my GP again today and she advised to call for another appointment to review with the neurologist as my hand has got worse and to link in with the MS nurse.

Any advice would be much appreciated. 🙂

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6 years ago

I do know that neurology services vary widely over the country. I have a friend whose neuro REFUSED to give a diagnosis (over 8 years) because he said once she was diagnosed she’d never get insurance again. (!) Meanwhile, in all that time, she wasn’t getting the meds she could have had. You are entitled to a lot of support and to medication – and you can exercise your right to be treated anywhere in the country. I travel into london for my treatment because it’s such high quality- so don’t be put off or be too trusting of the men in white coats! All the best!!

6 years ago

Hi, thank you for the advice. I’ve requested another appoinntment and have got booked in with the MS Nurse. Im based in outer London so should be okayl. Even though I’ve had this diagnosed for years I haven’t paid much attention as it hasn’t bothered me too much. Wish I never knew until now. This episode has shook me up and im trying to work out what is best. I’m probably reluctant to go on meds but will if I think they will preserve things, guess there’s no guarantee there either?. Although if my hand recovers i’ll probably wait and see. I haven’t told my work either as I’m concerned about being labelled and not being able to write has been interesting, thankfully I have the laptop. Not sure what I want to ask or know, guess I’m just putting my thoughts down and hopefully bit by bit I’ll find my way thru this.

6 years ago

I think we all need proper medical support, not just an occasional word with a neurologist. In the nine years since I was diagnosed I have managed to stay stable, but only with big interventions: MS nurses to manage me on the DMDs, bladder clinic to deal with overactive bladder (thankfully resolved),functional electrical stimulation clinic for a device to help with the foot drop, and most of all physios. I’m with the National Hospital for Neurology/Neurosurgery and they are brilliant, cos most of the clinics are within the hospital and you can see everyone the same day. Outside the hospital, I pay for a neuro physio assessment every month so that I’m checked for any worsening. That has been a brilliant move and I’ve headed off lots of potential problems. Without all this, I reckon I’d be a real mess. And I only ever told a very few people at work – a good move.

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