New to ms help

I have recently had mri scan showing lesions on brain and spinal cord. I have also had lumber puncher showing bands ? Went back to see my nurologist last week she said she was referring me to a MS nurse does this mean I have it ? X

Oh Joanne

Poor you. The lack of communication skills some doctors have is utterly shocking.

The only person who can tell you for definite ‘you have MS’ is your neurologist. But clearly you’ve seen a numpty of a neuro who failed to make things clear.

It sounds to me that you’ve been diagnosed. Poorly, but diagnosed. Two things that tell me this are the lesions (I assume these are demyelinating lesions, but I doubt that you’ve been told this), and the ‘bands’ in your spinal fluid. Again, I assume these ae oligoclonal bands that appear in CSF but not in blood serum.

The fact that the neurologist has referred you to an MS nurse seems to make this clear. (To me at least - although I am not a doctor and am making some sweeping assumptions!)

What you need now is a good MS nurse to talk you through what’s happened to you, discuss an ongoing symptoms and also disease modifying drugs (DMDs). These are designed to reduce the number and severity of relapses.

If you have been given the contact details of your MS nurse, make contact yourself rather than wait for them to contact you. If you don’t have the contact details, try phoning your neurologists secretary and ask for them.

Best of luck Joanne. You can keep asking questions on here, but keep in your mind that just as randomly googling MS is a bad idea, so is blindly accepting strangers opinions (ie us!). Rely on your medical professionals. (But you could try to teach your neurologist how to communicate!)


Thank you for your reply :blush:

I seen my nurologist 2 weeks ago who said she was writing to my GP to start me on medications to help with numbness and pins and needles and headaches I’m having. I his still hasn’t been done :persevere: just rang secretary she said the letter has been written but not approved yet.

I have also been referred to a ophthalmologist as my nurologist said I had optical neuritis a few months ago but when she saw me 2 weeks ago she said that she expected it to have changed and it hadn’t so she thinks I have two conditions :woman_shrugging:t3:

I am really fed up with it all and the unknown. I got told about a month ago in AE that I had abnormal MRI scan and that I needed to see my neurologist for answers which when I called very upset was told possible MS but like I said when I saw her in clinic she said all my tests I had was positive and she was referring me. I hate we have to go in alone as I just get like kind block and don’t think to ask questions

She as given me no information regarding MS nurse other than I will receive a letter.