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How I was told I had MS

I have never actually written this down before but my diagnosis was awfully made worse because of a specialist who was not a people person. The nurses had warned me what to expect, they never warned him about me. We never hit it off maybe that was why he treated me as he did. Read about it on my blog

Www. Disableddon.blogspot.co.uk

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There is never an excuse for bad manners Don, good for you telling him straight.

i had an appointment with the nurse at my DRs surgery shortly after having my one and only MRI and before I was given the results. "How have you been lately " she asked “oh fine” I replied to which she responded with "and how is your MS " It’s just as well that MS was what I was expecting. I felt sorry for her she advised me to speak to my doctor, I didn’t bother I just waited to speak to the Neuro at my follow up appointment.

Jan x

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Hello Don.

Like you, my diagnosis came in 1994. March 3rd to be exact. Fortunately my neurologist was a very gentle encouraging old boy who retired four or five years later. Again I knew already and he acknowledged that. Mind you, the two nights I spent in the Brook hospital in Kidbrooke was something else. Talk about the NHS at its worst.

It’s all in the past now however but it’s been the basis for some good anecdotes both amusing and serious.

Best wishes, Steve.

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I saw a young & not ‘people friendly’ registrar.

He said that it’s unlikely that I had MS but maybe they should consider a lumber puncture. I said I had an LP a couple of months ago & hoped he had the results. He then spent about 10 minutes on computer. Then said ‘I’m sorry to tell you but you have MS’.

Might have helped if he’d looked at my notes before I was in the room…

I already knew I had it so wasn’t a great shock. In fact was a relief as I didn’t want to spend any more time in limbo.

Don the link to blog isn’t working but I’ll see if I can find the blog.

Pat xx

Great blog Don. What a way to tell you!!!

Working link is here:

http://disableddon.blogspot.co.uk/

Pat xx

I was diagnosed june 16th 1992 at 3pm.i had a MRI 4 weeks previous,and they told me to see my gp for the results,so i went to my gp 4 weeks after,my gp was shocked the hospital hadnt got in touch with me,so he made a phone call,and then said you have to go see them in 3 days time for your results,so whn i got there they were shocked that i hadnt been told by the gp because they told him to tell me the day he phoned them.

i was annoyed about all this and when i told my gp, he held his hands up and apologised and he said he didnt want to tell me the bad news, i felt sorry for him,he said it was time he retired because he couldnt handle breaking bad news.he retired not long after that too.

i did not like the dr who told me i had ms,he was ignorant,he said sorry to tell you, you have ms and i am going to discharge you,and if you feel need to come back anytime,you can…but go and live your life.

i didnt go back for 20 years no point really i only went back because the gp wanted me back in the ‘system’ why i dont know.

J x

Thanks Pat In was just online going to do that. I wrote it all last night in bed on my Kindle but couldnt do a link.

Thanks Darling

xxx Don

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I was told very kinbdly by a Doctor in hospital after a terrible night there. HOwever, I already knew so wasn’t a shock at all. Just glad it wasn’t MND.

Then immediately I was sent to see the MS Nurse. There I was, in pyjamas in hospital. Went to his room. Very nice man but no idea how to explain things to people! He said to me this is how explained to people he was training in MS how it feels to have been given this diagnosis.

He said he gives each person four pieces of paper. He asks them to write on first piece, what their dreams are. 2nd piece of paper, where they see themselves in 5 years. 3rd piece of paper what they really enjoy doing, eg. a sport. 4 th piece of paper what they would like to do and where they would like to live in retirement. Once they have finished writing he goes to each and everyone of them, takes the papers, scrunches them up and throws them in the bin. Then he says to his people that that is what it is like to receive a diagnosis of MS. All your dreams, aspirations, thoughts and dreams for the future, tossed away in the bin.!!! Can you imagine?

It is a good thing that I am a strong person mentally. When I have told others of that, with MS or not, they say they would not have been able to cope, especially since it was minutes before that I had received my diagnosis.

How about that then?!

Annex

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I was in denial for years before I eventually went to my gp who initially thought it could be Parkinson’s… Went home and googled my symptoms and MS kept popping up but I blotted it out till I was in the consultants office and he told me I had PPMS, I then mentioned the symptoms I have had for years but chose to ignore and he said it could be SPMS and just to get on with my life the best way I can.

I wouldn’t say he was insensitive but he had just dx me with a progressive illness of which there is no treatment for. What else can they say?

As Anne says all my dreams were tossed in the bin. We got married in our early twenties and had our first daughter the following year. This was supposed to be our time. This is not the carefree life we had planned for and it has taken a bit of getting used to.

Mags xx

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A Neuro told me to my face that I did not have MS, only to be informed by letter that I did a couple of weeks later. I liked his sense of humour.

Fortunately, I had self diagnosed years before, so hardly a shock.

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The neuro I seen was about as much use as a chocolate teaapot. He matter of factly said you have MS, there’s no cure, its prrogressive, no treatment…go home, forget about it and live your life…bloody fat chance, as hard as I tried, it would not let me forget about it.

I carried on seeing him every six months for several years, the appointment was always an hour late, about 7 minutes with him, still has usual unhelpful self, so I plucked up courage to ask him if there was any point me keep coming, he said no as he could offer me diddly squat, so that was the last he saw of me, many moons ago now.

So glad to have everyone on this forum, its a very lonely illness.

Pam x

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I was diagnosed by a German neurolagist when I lived in Spain. He was not unpleasant but not much of a comfort either, he simply said go home and order some Melatonin, this is what we use in Germany.

Although Melatonin isn’t available in the uk it is in Spain so on the way home I stopped at the chemist and bought some. On the outside of the packet in large letters it said NOT TO BE TAKEN BY PEOPLE WITH AN AUTO IMMUNE DISEASE!!

Luckily I had a wonderful GP so I went back to him and until moved back to the UK I didn’t see a neurolagist again.

Nina x

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Just been catching up on your blogs Don…they are a real treat!

Well done for Christmas and new year…sorry the price was so high!

I could just eat the pate but my digestive system has gone crazy so I will pass for now, thanks

take care,

Nina X

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I read your stories and teared up. Just listening to the insensitivity of doctors. I remember as a nurse during for ages consoling people who’d been given news in that insensitive way. I still sometimes feel embarrassed that anyone in the medical profession (from the top right down to the bottom) could feel so little compassion for others.

Then you had me thinking about my diagnosis - I went for treatment for a slipped disc in my lower back, was fully examined by a neurological specialist nurse, who vanished to speak to the consultant. He arrived a few minutes later to say “I’m sending you for a full body MRI as I’m certain you have MS”.

What a blow that was to both me and my dad. The MRI didn’t show enough lesions but it showed massive damage to my neck so they operated and stopped mentioning ms until a year later when my balance etc never improved. They revered me to an ms specialist Neuro who did a barrage of tests including an LP which was positive.

I’ve now got a fantastic Neuro and MS nurse and like so many of you, once the shock wore off I’m so grateful to have a dx that explains my symptoms rather than beating myself up for being pathetic. See, we all have a lot more in common than we thought. Some doctors still need lessons in inter personal skills, and others need a firing squad.

This forum is a godsend. Take care.

Cath x

Cath the nurses all knew and had forewarned me about him hence me calling him back when he talked about me rather than talked to me. Some nurses from other wards came and said Well done to me.

I don’t know why specialists and surgeons get treated like God’s

XXX Don

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I’ve always hated it too Don and been one of those nurses trying to prepare patients before their arrival. Many of the offending doctors give themselves the God complex as they feel they control life and death. I remember getting disciplined more than a few times for speaking up but it was never taken very far as the nursing managers often praised me afterwards.

That’s one of the great things about being a patient now, I can say what I feel and it often gets me brownie points from other staff. I’m writing a letter of complaint about the consultant in charge of my recent hospital stay.

The doctor looking after me was quite worried about my blood results and the consultant never once came to see me or even get back to him. On Friday I left the hospital after waiting 2 hours for her as she was “on her way”. I phoned the ward later yesterday evening to apologise for leaving as I did but the sister said I’d done the right thing. She still hadn’t arrived when I phoned at 7pm (she was due at 1pm). The ward sister was sending a complaint in too. I didn’t discharge myself, the diligent doctor was happy for me to go but would have felt better with her agreement.

If I’d have waited I’d still have been there on Monday which is shocking when you realise there’s a serious bed shortage too. Hopefully my bed is now being used by someone needing it much more than I did.

Take care

Cath x

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That’s dreadful Cath, I dont blame you for leaving, or writing a letter of complaint.

Pam x

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Have been catching up with everyone’s posts. Am so down - have annual date with consultant in two weeks and dreading negativity and feeling of hope lessness. I phoned neuro nurses the other day for advice on chronic constipation and was told that I had been discharged from neuro nurse service because I didn’t have a diagnosis. I said that might take years, and very lovely nurse said yes, and you shouldn’t be left with no support, so will see about getting me back in the fold. I feel I just can’t face years of dependency and my world shrinking smaller and smaller.

Thanks Pam, I think the nhs is often criticised wrongly but some times one person can make an experience unpleasant.

Oh Lynda I’m not surprised you’re down. The time I (and so many others here) spent in limbo was soul destroying. Not knowing what’s wrong, is it all in my head, is this something that could have been caught early and treated, am I just really pathetic? are questions we’ve all asked. But one of the worst things is that you get no help or support.

Could your local continence team not help you? In some areas you can self refer but otherwise your gp can do it. They’ve been fantastic with my family. Hopefully you’ll get answers when you see the consultant, let him/her know just what you’re going through. I never imagined the stress or helplessness involved with not having a diagnosis until it happened to me and they may not really understand either.

Most areas do allow you to self refer to the Occupational Therapist team by contacting your local adult services. They are really good at assessing you in your home and making sure you have any equipment you may need. They’re also a source of information you can tap into.

I know none of this will get you a dx sooner but sometimes any help is a start.

Take care.

Cath x