Undiagnosed - waiting to hear from Neuro

Hello all.

I am not yet diagnosed but waiting to hear from the neuro. I had an MRI on 26th Feb and I have not heard anything yet. I was told by the MRI technician that I would get a letter. It will be 2 weeks tomorrow that I have been waiting. The leaflet said that it takes 5 working days for the referring consultant to get the scan result and they would contact me.

I am worried that I have missed a phone call or something. But at the same time, I am thinking no news must be good news, so not to worry too much. Would anyone else be starting to fret? I have had to come home from work early today due to severe neck, shoulder and oddly scalp pain. I have long hair, and the weight of it pulling my scalp drove me to tears last night. I have all sorts of problems which is why the Dr is worried it could be MS.

Would any one else be calling their GP to see if any results have been posted yet?

Thanks, Jemma.

Hi Jemma… and welcome to the forum if you’ve not used before…

I’ve actually waited much longer for MRI results so certainly no need to fret yet. The hold up is often on administration side… simply a backlog in getting the letters written.

I know the waiting is very frustrating so hang on in there… won’t be long.

IF it does turn out to be MS, it is not the end of the world… and once you get a diagnosis at least you can get drugs to help and you know what you’re dealing with. It means a change to your life… but certainly not the end of your life. But early days yet… lots of conditions cause symptoms that are like MS.

Hope you hear soon hon. In meantime, get as much rest as you can and try not to stress out (huh easier said than done I know!).

Pat x

Hi, I didnt get my results until 3 weeks after the scan, and that was only after phoning the consultants secretary. She then faxed them to my GP. The results were multiple brain lesions and a request for cervical spine scan. I also thought no news is good news, but i dont think that counts these days! Why not phone the neuros secretary although they might not have received them yet. Hope that helps!

Hi Jemma and welcome to the site :slight_smile:

No news is good news in that they’d have contacted you by now if they’d discovered something urgent. I’m afraid they aren’t so quick for anything that’s not urgent so we do rather have to get used to the waiting game :frowning:

It is worth calling the neuro’s secretary once it’s been a couple of weeks - hopefully they will at least be able to tell you whether or not they have the results and when you are likely to hear about them.

Hang in there!

Karen x

Hi guys,

Thanks for the replies and welcomes. :slight_smile:

First off I phoned my GP in case they had them, they didn’t. I then emailed the secretary and they said that a copy of the results will be with my GP and I will have a copy in the post. Hopefully they got sent late Friday or something and will be there tomorrow. I am getting really anxious about it all now. Just want to know yes or no. So does my employer. I get asked every day if I know anything.

I was sent home from work again today and this keeps happening. I am not really in any frame of mind to work. My concentration is awful. My headache distracts me and the general joint pain and shaky hands is off putting. My head nurse asked me if I should be in bed when I got to work this morning. I agreed but the other receptionist is on holiday. She said not to worry and sent me home 2 hours in to the shift. I feel like I am a total burden on everyone at the moment. :frowning: not a happy person today :frowning:

Thanks again guys and until I get some news, I may keep popping up on here for some advice.


Hi everybody, I haven’t yet been diagnosed with MS although, I am waiting to be seen by a neurologist in the next few weeks. In the meantime I feel like I am going mad and just need to write down something to get it off my chest, so I apologise to you all now if I go on a bit. I have read so much on the Internet about signs and symptoms since two docs said they were concerned that my symptoms are pointing to MS. I feel a bit isolated at the moment as I am finding some symptoms very debilitating and without a diagnosis I am scared people will think I am swinging the lead. I have had a rough ride over the last 18 months before all this, with surgeries on my back due to chord compression caused by a prolapsed disc, then a repeat of the same op, due to the chord prolapsing further, again causing chord compression just six weeks after the first op. Since then I have been left with severe left leg pain, back pain and numbness and pins and needles in both legs and feet. I have had to give up work as an Operating Theatre Sister, and am currently at home with three young children, 9, 3 and 2. Although I have adapted my lifestyle to accommodate my back problems so as not to affect the kids too badly, what has since happened with all these new symptoms has knocked me sideways. I started in January with what I just put down to neuralgia in my face, right side, the next day it went numb. It spread down the back of my neck, I had weakness to my left arm, then as the weeks progressed my back on the right went numb too. I had a few is odes after the first symptoms whereby I would get stressed out Nd the numbness and weakness went worse. It also affected my speech, I just could not make the words come out. I also had tremors. I went to my gp, who said he didn’t think it was MS despite my neurosurgical consultant who looked after me for my back saying otherwise and referring me to a neurologist and sending me for an MRI. The brain MRI came back normal, which was a big phew! Moment. Then last week the fatigue started first, Thursday I started with dizzy episodes, by Saturday I was in bed numb all down my right side, lost all power in my right side. Tremors and weakness such that I could not hold a pen to write. My right ear ringing. Each day I feel a bit better, but today my husband has had to go to work so I am feeling pretty scared right now as to what the day holds. I just don’t know what to think, and wonder of anyone else has had any similar experiences to mine. Thanks for ‘listening’ xxx

Hi Anon, you should create a new post for yourself you will get more replies as some people will have already looked at this one.

Take Care

Moyna x

Anon - go back to the first page of this section and click on the ‘new thread’ box to start a new thread with your post first.

Liz [Moderator]