@George1960

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George1960

Diagnosis disclosure

Hi, I know it's fiction but has anyone seen Coronation Street? A character in the program has just been diagnosed with MS. He has reluctantly told his Daughter but only because she witnessed some symptoms, he said he doesn't want anyone else to know. Is this reaction usual? I myself have been to see a Neurologist and have got an M.R.I. Appointment next week, up till now I haven't confided in anyone mainly because the symptoms I have had seem so random and to be honest the Neurologist I saw made me feel like my symptoms were imagined. How long do you usually wait for M.R.I. Results?

gates1989

@gates1989

I was diagnosed when I was 18 and I did not want anyone to know, I'm 27 years old now and I still hate new people knowing or finding out, and I hate talking about it with people but everyone is different xx

Stumbler

@Stumbler

Everyone is different when it comes to disclosure. It's a personal thing and it's what feels comfortable to you. Just remember, once you let this particular genie out of the bottle, you can't put it back! Regarding the MRI, the results have to be returned to the Neurologist, who needs to examine them and draw their conclusions. These conclusions may not be definite and further tests may be required. Give them a couple of weeks, then contact the Neuro's secretary and enquire about them.

George1960

@George1960

Thank you xx

potter

@potter

I think my results took almost a month to get, it depends on how backed up they are. I didn't tell anyone for the first year, you have to deal with it yourself first. Potter

Heids

@Heids

I had to wait 3 months for my results, which seemed like a lifetime! I told the people closest to me first and my boss. Because my symptoms can't be seen, except when I conk out due to fatigue, most people forget!! I am surprised that your neurologist thinks you're imagining it because the trouble with MS so many of the symptoms are 'peculiar' and hard to explain. I said to my neurologist that she must think I'm mad but she reassured me and said she'd lots of similar things before! I hope all goes well. Heids

merfield

@merfield

I owned up straight away - my symptoms were so obvious: wobbling, impaired gait, falling over. An MS friend said she thought that's what my symptoms indicated. But with RR it's so different - and each MSer handles it in the way that suits 'them'. I absolutely understand the need to keep schtum. [email protected] says 'once out, you can't put the genie back in the bottle'. Good Luck xx

kateybash

@kateybash

I talked to 3 friends about my symptoms but felt very low when 2 of them said 'oh yes , I know someone with MS and they're fine' . That felt like a kick in the teeth even though I know they were actually trying to make me feel better. Good luck with results. X

Vixen

@Vixen

Hi there, I agree with Potter that it's good to wait until you are sure yourself how you feel about the diagnosis. I haven't gone 'public' yet but that's just because I can't bear to have the same conversation over and over again. I'm at the stage where having been diagnosed five months ago I am finding those conversations boring now. Only my nearest and dearest know. But, I did tell HR in my workplace. This is because if you need any adjustments, or to take time off for appointments or wobbles, then you won't face an interrogation. And of course, it needs to remain confidential as long as you wish it to. Also, disability in the U.K. Is covered by the Equality Act, so if you do disclose to employers then they can make sure you get the absolute maximum support, even if you don't need it.

Marcyg921

@Marcyg921

As people have said, everyone is different. For months I adamant that nothing was wrong and I was going to eventually heal until one of my best friends who I worked with literally had to force me to go back to the Doctors to get a 3rd opinion and that's when I eventually got referred to a neurologist (who also felt there was nothing wrong) but he wanted me to have an MRI scan and the results took about a month to get back to me. As for who I told, I told some work colleagues (only because they saw something wasn't right) and my parents but aside from that no one knew until I knew for sure it was MS.

TracyD

@TracyD

I was 'out' from day one about having MS, to be honest it's changed my life, but in many many ways for the better. Its certainly made me focus on what is important to me and those I love rather then 'things' that you can't take with you when you go

MSUSER1771

@MSUSER1771

Like the Coronation St character I had optic neuritis years before the 'big' symptoms started to happen. It was, in fact a gap of 20 years. It was 1990 when the optic neuritis occurred and then I was told that it was something that happened mostly to women and mostly around my age (30); no looking on the internet in those days. If I hadn't seen a magazine article a month later I would not have known what it could be. When I confronted my GP she agreed that it was more than likely due to my family history. Am I glad that I found out when I did? Yes. Did I tell anyone except for close family? No. Was it the right thing to do? Oh absolutely. I had those 20 years with hardly anyone knowing. We are all different though

barrynoelevans

@barrynoelevans

I really hope you guys will forgive me but I have not actually had a diagnoses as yet. It is just that I didn't know where else to go to vent thoughts that at this time I feel I must keep from my family. I have been referred for an MRI scan having been treated for labyrinthitis. I hear that many with MS are diagnosed as having labyrinthitis and I am convinced I am one of them. I say this because labyrinthitis would not explain the numbness in my left arm and legs. My symptoms tend to come and go I have good days and better days but I hate being in this state of limbo. I have heard that it can take years to get a conclusive diagnoses as one MRI scan may not be enough. I don't know much as I see conflicting thoughts elsewhere that leave me frustrated. I love that most of you focus on the positive side of things but I am the care provider for my son who has Autism and although I have family who will step in I am his Dad. It is tough when I imagine trusting others to insure that he continues to get the quality of life he needs . I work in media which requires a lot of concentration and staring at a computer screen for more than a few hours can be really difficult. Having said that if my job involved a lot of working around I wouldn't be able to do it at all. My problems with vision, balance coordination leaves me feeling literally all at sea and life is very difficult right now. Once again please forgive me for doing this before a diagnoses. I will feel a bit of a fraud until I know for certain what is going on but thank you so much for allowing me to vent my thoughts.

Stumbler

@Stumbler

Hi @barrynoelevans and welcome. We can all appreciate your situation. It is so frustrating and worrying to know that there is something wrong with your body, but for this to be a mystery. It's difficult to move forwards when you don't know what's going on. And, you don't want to worry your family until you have some answers. MS can present in various ways, but so can other conditions. Hopefully, the MRI will provide some of the answers. Be wary of using Dr Google to self-diagnose. You can encounter horror stories which are way out of context. Always stay with creditable websites. And, no need to apologise for joining us. You need to vent somewhere and we understand your need.