I would contact GP or Consultant who have requested MRI, they would be informed of the results 

Yeah, I thought of that but I can't find any number to contact the consultant so I'm a bit stuck trying to find out how to contact them.

Hi Abbie,

It will be the department you first went to pre-MRI - like in my case it was rheumatology.  If it was your GP who directly referred you, then try there. If you have a letter with your hospital number and NHS number too it will help. You need to know what's going on. I would just say that I had been referred for futher tests, but noone has told me why, can someone please give me some answers? After all it is an evasive procedure and it is your body!

Hey,

Another update I got in touch with the doctors secretary but had no reply, gp doesn't think they are going to get the results, so I'm back at the start where I have no answers really.

Abbie

Hi Abbie,

Maybe they are waiting to release the results after the lumbar puncture as it will be more conculsive. If it's any consolation I am waiting for biopsy results and I know who my consultant is - and I can't get my results either. It's not good xx

Yeah, maybe but I would like to know that, because I have to wait nearly a month for the lumbar puncture with no communication with anyone who knows why I'm having the procedure.

Abbie

Hi Abbie, 

There can be lots of reasons for a lumbar puncture, and you're right, they should let you know why they are doing it. I think it's time you got in touch with PALS again and tell them you will put in a formal complaint if noone can give you any information. I might need to contact them myself for my own predicament - my consultant is a locum and I don't know if he works full time or not or if he is even still in the job!

Hi,

Still haven't been able to get in touch with anybody. So don't know what to do at the minute.

Abbie

Hi Abbie,

Is your appointment for your lumbar puncture soon? They might not tell your results beforehand. Or perhaps you can ask when you are going in for the procedure why it needs to be done. There should be a contact number on the lumbar puncture appointment where you might be able to ask someone? I am lucky I do know who to contact - I have not been given my results yet as they are not all in. Perhaps they are unsure of something on the MRI and need to do this test before they can give you the results. On my MRI they couldn't tell what kind of growth I had, and that's why it was removed by an excisional biopsy. I still don't know what it was - but it's out! I've been told one of the 2 results is in - but they will not give me that until the 2nd (histology) result is in. I know that isn't any answer for you, but perhaps they don't want to tell you something that turns out to be wrong!

Another update there is absolutely no information on the appointment letter for the lumbar puncture, still don't know who to contact and it's been over two months since the mri, so just waiting and not knowing what else I can do.

Thanks

Abbie

Hi Abbie,

I'm sorry noone is telling you anything, all I can assume is that the images on the MRI is why you are having the lumbar puncture. You might be able to ask someone just before the procedure why it needs done but otherwise I don't really know what to say. I'm in a similar boat waiting for results, so I understand your frustration. It's not nice. Do you have long to wait to your lumbar puncture? I hope you get some answers soon x

My thoughts would be to phone the Cancer research uk  helpline nurses or breast cancer now or macmillan - they are very good at advising on how to navigate these situations. I think the key person is probably your consultant PA (if you do speak to them - find out the name and ideally email address if you can - it will help for future reference - even if you give your own email to them and they might email you back to let you know what's happening re an apponpintment etc then you have the details to hand) not your GP but this may differ between hospitals. But try speaking to a nurse on the helpline and they will advise. I'm so sorry you're going through this. ️

My thoughts would be to phone the Cancer research uk  helpline nurses or breast cancer now or macmillan - they are very good at advising on how to navigate these situations. I think the key person is probably your consultant PA (if you do speak to them - find out the name and ideally email address if you can - it will help for future reference - even if you give your own email to them and they might email you back to let you know what's happening re an apponpintment etc then you have the details to hand) not your GP but this may differ between hospitals. But try speaking to a nurse on the helpline and they will advise. I'm so sorry you're going through this. ️

Hi guys.

I just wanted to thank you guys for all the replies and support, it's hard for me at the moment I'm only 19 so I don't really know what I'm doing and all my family says is that I'm worrying too much, doctors won't listen to me they think I'm making stuff up, so to have people believe me and not say to stop worrying it feels great. It took nearly a year of begging my doctor for this scan but I have other symptoms that won't aren't taking any notice of, and because of circumstances in my life my family make me feel as if I don't exist. I'm also a young carer for my mum so whenever anyone talks to me all they care about is my mum. So it's nice to have people who even make me feel as if they care about me.

Im sorry for the rant I just needed to get this out into open. Thanks for listening to me.

Abbie

Hi, did you get your results and LP done? I came across this post while searching current wait times for mri results due to my symptoms and fh of ms usually an LP is done after mri to confirm an ms diagnosis so wondered how you got on?? X