Hello,
I was diagnosed with RRMS on 19th Dec (this year)
My Neurologist said he would be sending a letter onto my GP to confirm his diagnosis etc.
Its only now that everything has sunk in and ive had time to think etc…
Im just wondering, do i get a letter or something in writing confirming this diagnosis at all? It would just be good to have, and would be helpful to show my employer etc,
???
Thanks
Zazzzy
Hi, I was dx on the 03/12. I think my GP have had a letter but I haven’t. I am seeing my neuro on the 06/01 to discuss treatment etc. my work just accepted what I had told them. Have you hot another appt booked? May e ask for something then? How are you feeling? My head is still shocked I think as it wasn’t expected. Lorna xx
Hi Zazzy
When I first saw the neuro he talked about RRMS and disease modifying drugs and that I should make the DVLA aware of the diagnosis. My wife and I walked out from the appointment in shock but both were understanding that it “was” MS.
Five weeks later I was copied in on a letter sent to my GP from the neuro explaining that the results of my MRI are suggestive of demyelation and that my diagnosis was now “likely MS”.
From my own personal experience (and I am not saying that this will happen to you) I would wait for the letter to arrive and the full diagnosis in writing before doing anything. Things do pan out differently for each of us, but since disclosing the MS to my employer, things have changed for me and I do feel that I am treated differently (in a bad way) to my fellow colleagues.
People at work were sympathetic when I disclosed that I first had MS, but when the diagnosis went to likely, peoples attitude changed and i’m probably being paranoid, but I feel like people look upon me as though i’m a fraud. In fact, I have even been asked if I have ever suffered from mental health issues and if “I think I might be depressed”. Which I am not and never had done.
Best of luck with whatever you decide to do and keep us posted on how things go.
Hello Zazzy
Sorry to hear about your diagnosis. I was diagnosed in August, its a quite a shock isn’t it?
I was sent a copy of the letter confirming my diagnosis…they asked at my appointment if I wanted a copy.
Why don’t you ring the neurologists secretary and just confirm that you would like a copy of the letter. For the record, can I just point out that they can’t actually refuse.
All the best to you xxx
Hi Zazzy, Like Blossom, I was on copy of the letter sent to my GP. I believe they should do this as a matter of course now - not have a correspondence ABOUT you, as if it had nothing to do with you. A few neuros seem a bit slow to join the 21st Century, though. If the letter’s already gone out, but you weren’t copied, you’re entitled to see it anyway, free of charge. If you would like a copy to keep, they’re entitled to make a small charge for photocopying. Tina x
Thanks very much for your replies everyone. I will wait it out for few more weeks to see if i receive a copy of the GP’s letter, if not then i will ring and ask for one - i would just prefer to have it 
Hi Star1981 yea i have app with MS Nurse beginning Feb - this is to confirm what (if any treatment) i have chosen. Im ok… it wasnt too much of a shock when i was told, as my MS nurse was telling me for a while that she was sure that this was the case etc… i think it was more the ‘sinking in’ factor that it was actually confirmed - like i can put the actual name to it now, if you know wat i mean?? what treatment are you going to do? you will have to let me know what u get told about the letter during your app.
Thanks for your warning and concern Anon regarding my employer etc, but i am lucky… My employer has been amazing since the beginning, even when i have had to take long abscences due to my relaspes. I have kept my employer up to date with everything and provided the hospital app letters etc as i went. Only my manager knows of the Diagnosis, i told my manager exactly what i was told and they were very supportive, havent asked for any proof but i would prefer to have something to show… non of my colleagues know, as they have no need too and that is how i am going to keep it.
On the Neuro Letter wen they state ‘Likely’ or ‘Probable’ or 99.9% MS, this is normal, as on most diagnosis letters, they cannot 100% diagnose, as they ensure they leave a bit of le-way encase it turns out their diagnosis was wrong (means they cannot be sued)
You should not have to put up with ill treatment or behaviour from your employer - if you are with a Union, then call them and make them aware of the situation, they can give you advice - also speak to your MS Nurse - ask if you could give your employer her/his card so your employer can call them if they are going to give you a hard time.
Thanks again for the replies, will keep you updated on the letter situation. Sooner would be better.
I disagree that “probable” is normal in a diagnosis letter. “Probable MS” is a diagnosis in its own right, and not a defensive way of giving a formal diagnosis of MS. Available formal conclusions of an MS investigation are: Possible MS, Probable MS, MS, or, of course, NOT MS. Possible or probable can move to MS later, if the evidence supports it. I was never diagnosed as “possible”. I went straight in at “probable”, to be confirmed several months later as RRMS (no longer any qualifier). I have letters documenting both. I think the distinction is important: I don’t think any critical illness policy will pay out on “probable”, for example, so if diagnosis letters routinely said that as an escape clause, hardly anyone would get the insurance. Similarly, I don’t believe “probable” does give you the full protection of workplace disability legislation, so employers wouldn’t be failing in their duty if they didn’t recognize it as an MS diagnosis - because it’s not. Many people with a “probable” diagnosis (the majority, from memory) DO go on to get a confirmed diagnosis of MS eventually - but not all of them. So it is important to know exactly what your letter says - especially before going public about it, if that’s your choice. I sympathize with Anon, because it does look bad if you tell the world you have MS, only to add, several weeks later: “…probably.” Obviously, there was no intention to mislead, but most organisations are not going to understand the subtleties and complexities of MS diagnosis, and will question why an employee disclosed a serious illness, only to seem to back-track. Like Anon, I was a bit surprised when my initial letter came through only as “probable”, because nobody had explained the diagnostic criteria to me back then, and my neuro had seemed a lot more certain in person than he did in writing. Luckily for me, I’d only ever told work I was being investigated for MS at that point; not that I did have it, so I didn’t have the embarrassing moment when I had to explain I might have jumped the gun. It could so easily have been me, though, if I hadn’t waited to see it in black and white. Even my GP couldn’t explain why it was “only” probable. She probably wasn’t familiar with the diagnostic criteria either, and how a neuro can be confident, but not yet able to prove. Tina
Hi I have been been reading this thread with interest. I have received 2 letters 1 from the ms nurse introducing herself and asking me to make contact to discuss my diagnosis at the request of the neurologist And 1 from the health board telling me they are pleased to inform me I will start modifying drugs in January. Does this constitute an official diagnosis letter as none are from the neurologist
Hello Ruby
Yes!! you can safely say you have your diagnosis. Contact your ms nurse and have a chat about it all.
Take care, xxx
Hi Ruby,
Whilst I think it is safe to say you have been diagnosed (you wouldn’t get the green light for DMDs if not), there still should be something in the system somewhere that is more explicit than that - your neuro should have written to your GP with a clear statement of what you’ve been diagnosed with, and what next steps are.
It probably doesn’t matter in practice, as I’ve never actually needed my diagnosis letter to prove anything - but I still have it, just in case. The insurers didn’t ask me for any evidence - just went straight to my GP (so will have seen the same letter). I’m not sure the letter would even be useful in applying for benefits, since they’re all based on what you can/can’t do, not the name of your illness, so it probably wouldn’t score any extra points to be able to wave the diagnosis - though it might, if it also mentions any specific difficulties you’re having.
Tina
x
Hi Ruby Before I was diagnosed the MS specialist gave me a probable ms diagnosis and referred me to see the MS nurse and gave me a list of DMD’s to check on the MS decision website. At the time I was in mid relapse awaiting my 2nd MRI results so thought it best to refer me then rather than awaiting. The letter I received from the nurse it mentioned like your to discuss diagnosis and to introduce herself and discuss the treatments available. I initially thought is this confirming I have M.S as hadn’t received anything in writing regarding MS but C.I.S. I had an appointment later that week with my G.P and and asked her did the letter mean it’s M.S I have ,she advised it will be a standard introduction letter the nurse will use and when I would be diagnosed it would be face to face with the specialist. My GP still only had C.I.S as my diagnosis. Since getting my scan results I was diagnosed with MS face to face with my specialist ( I received a letter confirming this and my G.P was copied in)and now I’m awaiting another set of MRI results as the specialist is still unsure type as my M.S seems to be pretty active and I’ve not recovered fully from my first episode in June. Polly x
Ok - i think i may be a bit more confused than what i originally was haha.
i havent had any letters at all yet - i dont think i would get an ‘introduction’ one from my MS nurse as i have known and been with her for years now - know her more than the Neuro.
I havent received anything about Medication, the Neuro discussed all that with me during my diagnosis… and gave all the info on the 3 injections he would like me to choose from, i go back in the new year to talk to the MS nurse about which injection i have chosen.
The Neuro told me ‘he was confident now to give me a clinical diagnosis for RRMS, and to inform the DVLA and my insurance policies of this diagnosis’ then went onto the injections he would recommend, but would leave the final decision to me as to which one i would use.
so… considering i will starting my DMD’s in the new year, and i have to tell the appropriate parties of this diagnosis… is it an actual diagnosis?? can anyone help me here - think im getting myself confused… (who knew this could get so technical and confusing Huh)
Thanks for all the replies
Zazzy
Hi Zazzy I would say yes you have a diagnosis! It can be confusing as everyone has very different experiences and there never seems to be two which are the same. It’s good your starting treatment in the New year and I’m sure you will receive a letter confirmation about the diagnosis whether it being from your G.P who receives it or you directly. All the best for 2014! Polly x
Hello Zazzy
Sorry your now feeling more confused.
You have 100% been diagnosed
Take care xxx
Thank You Polly and Blossom, you are both a big help
i wll keep you updated on the letter front.
Have an amazing New Year Eve whatever you endup doing.
Zazzy xx