ok guys, well i am back from hospital. saw a doc who wasn’t my first doc and hadn’t even seen my scans!! so was going through them whilst I was there and said “oh im not sure if its normal or not” ill go and ask the doc I saw couple weeks ago!!! well he was with another patient but spoke to her and apparently has already sent me a letter in the post explaining my results. Anyway she came back in the room and told me I have couple of lesions on my brain and one in my spine. So she says my doc has said I have ms, but I am still having my evp next week and also I may or may not need a LP, that’s down to a specialist who I will be seeing, there are 2 ms specialists, so I have to wait to hear, and I also had blood tests today just to rule out any disease but she thinks they will be negative. So im all over the place, as I have come out a bit unsure as she was rubbish. But been told yes I think I have MS? Is this normal???
I’m probably 3 months down the line from you in regards to a DX.
Thinking back to my first apointment, it wasn’t denied by my neurologist that I had MS, but he never actually said that I did for certain. In fact the whole appointment was very confusing and the manner to how he was talking about MS to me, was that he believed that I did actually have it. I walked out thinking I was DX’ed as I was told to inform the DVLA etc and insurance companies.
Three weeks after the appointment, I recieved a letter which was sent to my GP, explaining that yes my MRI scans were suggestive of demylation and that I had a new diagnosis of “likely MS”
After some research on my behalf, I believe that because I have only had one episode/ attack of MS, then I am at present a likely DX. If it happens again, then the attacks will be “multiple” and I might get a ful diagnosis.
I’m still confused now…
Hi, After my first MRI and LP they all showed signs of MS. I was told 95% chance it was M.S but was advised they couldnt diagnosis me until I had another episode or see progression in my next MRI scan. I had another scan and it did show more lesions so at my check up with the M.S specialist I was diagnosed with M.S. What I’m waiting to find out is the type as they are still unsure between RRMS or SPMS. I had another MRI today so hoping now that I’ve had 4 since June that they will enough information to understand what type I have. Once you meet with the M.S specialist things hopefully should become more clearer as the neurologist I seen prior to diagnosis wasn’t specialised in M.S so didn’t want to tell me yes you have M.S until I seen the specialist. Take care Polly x
thanks polly, this may well be where iam right now.
I had brain mri showing several patches of demyelination, doctor who saw me about the scan said he thought it it was ‘definitely’ ms.
Then I saw MS specialist who said that although there was ‘definitely’ demyelination, there was not enough for diagnosis of MS - so he officially diagnosed ‘radiologically isolated incident’ and has now odered further mris and suggested LP to see if there is any further evidence to support diagnosis of MS. I think that from reading posts on here, this does seem to happen fairly frequently.
So it is not definitely the case that having lesions will result in ms diagnosis. It might do - they might telly you there is definitely enough evidence already - or they might want to wait-and-see if more lesions occur before giving MS diagnosis.
I would guess the fact that blood tests have been ordered to rule out other possible causes (although they are expecting these to be clear) possibly indicates that the doctors are not yet 100% sure that it is MS, as they are still going through the process of ruling out other possibilities. Blood test results usually come back very quickly though, so hopefully that wont take long to sort out.
It sounds like you are having all the right tests, and although it is frustrating to have to wait to see MS specialist, especially when other doctors have indicated they think it is MS .
But I would definitely wait to see what MS specialist thinks - and what ‘official’ diagnosis he makes (which will be written down and put in medical records) before considering yourself ‘diagnosed’.