Muscle Diseases

[CajaDeLaMemoria]

Hello :)

I've just had a rather confusing letter from my neurologist stating that she suspects one of my diagnosis' may be wrong, and that in fact I have a 'muscle disease or spinal condition'.

I've called to clarify what she meant, but she's currently away until July, so my "urgent" appointment is months away. Her colleague recommended that I research the conditions, so we can talk about them next time.

Googling seems to bring up a few conditions, but not much. I know I could wait, but I'm very anxious, and I'd much rather know if I "fit": this would potentially mean I have a treatable, manageable condition rather than something that will eventually be a death sentence.

Does anyone know where I could find information on muscle diseases? I'd be very grateful!

I think you'd be better of chasing the colleague about exactly which conditions she thinks your neurologist thought you should research - Dr Google needs some kind of starting point

I would book an appointment with your GP to discuss this. My GP is great at decoding consultant-speak although my consultant does not always write letters to my GP, so it isn't easy.

Also your GP can put in a pointed phone call to the consultant's colleague to request more information. Suggesting you google various conditions which you may or may not have is distinctly unhelpful.

I thought that might be the case!

I've asked the colleague to call me again, and I'll book a GP's appointment.

I'm a bit concerned that they are going to leave me wondering until July (I have very bad anxiety anyway!) and also that the medication that causes me so many problems might not be right/doing me any good.

Thanks everyone :)

Have you noticed a weakening of your muscles - mores aches than usual doing normal activities>