Just had enough now-bad day

New diagnosis and before diagnosis
1

Hi Everyone,

so quick history

I have been having symptoms since at least 2007 starting with ON

Jump forward to 2012 and another confirmed ON sent to neurologist and sent away 6months later lost feeling on one side of body, sent back to neurologist had scan confined lesions on brain and in spine. Told to watch and wait but happy to confirm MS.

Another year later 2more confirmed ON incidences another scan - white matter changes but maybe due to newer scanner once again watch and wait.

See MS nurse who asks for another scan and she believes another relapse- no concentration, word muddles, tripping and falling over and a few other niggles.

Neurologist agrees so send for scan and a LP. LP negative for bands but more white matter changes on scan.

Go for “urgent” neurologist appointment to be once again told they don’t want to jump into a diagnosis so to watch and wait. He confirmed my facial pain as TN (can’t spell it) He then once again says white matter changes could be due to a newer scanner. So I asked what else could be causing symptoms as he said ON, TN etc can be caused by many unimportant neurological conditions that we don’t need to be concerned about and will probably never find out.

So left with another scan and appointment in 6months but I just can’t see the point. All my problems are brushed off as “the same episode “ which is certainly not the case.

I am struggling to do my job through absolute exhaustion and pain (although I have now been given pain meds to try).

So I’m left feeling what’s the point I certainly don’t want any illness but myself, my Family, the GP and the MS Nurse can all see my deterioration but my neurologist just can’t. There is something going on with my body!

He is unfortunately the only MS neurologist around so I cannot be transferred to anyone else.

I’m not sure what else I can do. Any advice?

Thank you everyone

Syd xx

2

hi syd

it’s understandable to a point for your neuro to want to watch and wait but you have been having symptoms for over ten years.

you could write to the hospital explaining that you feel that you’ve been put on a back burner for so long that you are sticking to the bottom of the pan.

obviously you will word it better!

it must be sending you to your wits end.

carole x

3

Good idea to write as Carole suggests, if no joy after could involve Patient Liason service PALS to liaise for you… Only other thing i thought is, if willing to travel, could ask gp refer you to another neuro in another hospital for second opinion. As patient you can choose whichever hosp you want go to in UK, maybe find Ms specialist elsewhere and start there. If can, pay go privately for first appt and ask if take you on NHS after. Seems drastic to travel i know, but seems you’re rather stuck in the system where you are. Must be very frustrating for you., hope can make progress somehow.