Waiting for diagnosis

Hi Everyone,

I’m new to the forum but have been on this journey for about 18 months now. In May 2018 I was diagnosed with optic neuritis, and despite it being quite severe I refused treatment (steroids scream horror stories to me but I’ve never had experience with them). I was already under a neurologist for another health condition, but I was referred for MS investigations following the ON. I had been having sensory symptoms for a number of years, but they had never been problematic so they were brushed off, till I had MRI’s, lumbar puncture and EP tests following the ON diagnosis, and they decided I could be at risk of developing MS.

In the last 6 months, my mobility has rapidly declined. I had a spout of falling down stairs and in the street for 2 consecutive weeks, and struggled with walking after this 2 week period. My GP was in regular contact with my neurologist about my development but I didn’t hear back from my neurologist for a while, despite him telling my GP he was 90% certain I had MS.

I got a letter asking me to go and see my neurologist (this week), which I initially thought would be for a follow-up MRI, but there were no scan details on the letter, just a clinic appointment. After my GP showing me the communication between himself and my neurologist, and the last conversation I had with my neurologist, I have a pretty strong feeling I am on the verge of being diagnosed, and that this appointment may well be that conversation. However, I have no idea what to expect and feeling completely lost and in the dark with what’s going on.

Can anyone share their diagnosis story with me (i.e. how you were diagnosed - letter/face to face, and what happened within and after the conversation)? I would be really grateful for any insight and advice.

Thank you :slight_smile:

Hi Jasmine,

I haven’t been diagnosed but am suffering from Optic Neuritis that isn’t improving after 6 weeks. I have just had an MRI of my eye orbits and am seeing a consultant on Thursday.

I am so afraid I have MS, but the doctor said it will be a long road to any diagnoses. While you are perhaps further along the line of diagnoses I just wanted to reach out to say I can imagine how you’re feeling and you’re not alone.

I hope you start to recover your mobility soon and get some answers from your neurologist.

Sending best wishes

Pippa x

There is a protocol for diagnosing MS, a certain pattern has to happen before they can confirm MS.

Not everyone who has ON goes on to have MS.

I think its just deep breath and wait and see what the neuro says, he may well say it is MS but you need to know what type.

I had my first attack 2000 went blind on holiday, had several ON attacks between then and also VEP tests, MRI, lumbur puncture then a further VEP test which finally got my diagnosis of PPMS. He was sat in his office, just looked at me and said well the results of you your last VEP test I can now confirm you have progressive MS. He said i am sorry it took so long but we are there now. some comfort one minute no MS then next progressive MS.

so i have PPMS and well i just get on with it the best I can.

Oh please if you have severe ON, being offered steroids will slow the attack and help it heal better. although to be honest i have never had steroids, but my colour perception is now damaged. when i was going to have my flat painted i would find colour i liked and my daughter would say mum thats red do you really want red in your bathroom and here was me thinking it was pink ha ha.

I do tend to wear odd colour socks to my outfit lol, as i have the colour wrong.

anyway there is life after diagnosis. Hum what happened after my diagnosis NOTHING. Life went on, i lost my mum 2 weeks before diagnsosis, my husband in 2017 and moved to sheltered in 2019, life is just moving along and i am learning a new hobby, working with a wildlife trail camera and editing videos for my youtube channel and having a blast watching hedgehogs and foxes interacting with each other lol. xxxxx

Let us know how you get on ok. will you let us know how you get on with your appointment there is a ton of good people on this forum who will help you through it all if it is MS. some of the regulars have their fights right now, but i know they will be back to support everyone.

big hugs. xxxxxxxxxx

Hi I just joined and sorry to bother you I feel like I need answers and to be honest I feel like my doctor is unhelpful. I have been suspected of having ms I had a brain mri and my doctor told me I have signs of ms so I had a spinal tap about 1yr ago and he told me that showed signs and since then have been in nothing but pain everytime I’m on my feet I also had a spinal mri which I am confused about and now just left in waiting without being told yes or no to me having ms. I’m also an epilepsy since I was 4 and I am not sure what signs I need to look for and the only way to find out some truth is to ask someone who is going through this

Hi Ian you would be better off starting your own thread hun, as people might not see your message above ok.

everyone has MS differently its a snowflake disease. I do wonder why you have not had an infinative answer to what is going on. did you see your neurologist with results? I think you need to see your neurologist and talk through with them the findings ok. it does seem odd they have left you like this in limbo. maybe chat with your GP and ask to see neuro again. I wonder if there is a missing letter perhaps you should have had.

so for me you need to ask the question what is going on ok. they must have some idea.

You should not be in pain without support.

as i have gone through this and it took for ever to get an answer i know the best way to deal with it is to ASK he medical people who are dealing with your case, and find out why you have had no proper answers. xxx

Hi, about 14 years ago I went through the usual MS tests over a 12 month period after having similar, but lighter symptoms and at 8.30am one morning my local hospital called asking me to see my neuro at 1.30 pm that day. You can guess what he was about to tell me. PS, I feel lucky because 14 years later I can still walk (with a drop foot limp), slight balance problems, getting weaker on my left side, I lose grip on my left hand fingers after 10 seconds and could drop things, even a cup of tea and lower left leg and foot cramps. The cramps are not too bad as I take 15% CBD oil drops twice a day. Hope this might be of help.