Needed to see scan to believe I had ms

Hi , was dz with rrms in August 2008, but the truth was I went about telling people what was wrong with me and to be truthful I never felt anything towards my dz, but to be honest I always expected the phone call or letter to day, really sorry big mistake you do not have ms.

that never happened so my councilor said to go see my dr at hospital to see my last brain scan and take me through what she saw in it.

so I call southern general and got an appointment with my dr, dr Thomas.

my app was the 24th Aug. She’s a brilliant dr and really nice person, anyway told her how I was feeling, and she said last scan had been 3 yrs ago, and it was no problem to go through it with me, but as it would take a few minutes to load up she went through the usual questions and how I had been as I was just put back on co paxone, due to trying other meds that the side effects I could not live with,

well she then showed me my scan at least I do have a brain , and pointed out what she called whit spots and unusual things going on that proved I had ms.

but then went on to say she was going to get me back for a new brain scan and then she would go through that one with me, but then said I was now in what she termed a grumbling period of ms and believed that I now have gone from rrms to spms.

so not only did I get the proof I needed that I am not a hypochondriac like people are saying, the proof I actually have MS but it has also progressed.

so now I have went numb, I do not know what to think, I need to understand I am ill, but how and where do I start, how do I cope, how do I get my family to believe I have this incurable, painful illness, that’s I am not a hypochondriac , or do I just leave it.

janice

Hi Janice why on earth wouldnt people believe you have MS? You dont get DMD for nothing.

Maybe its because you are coping so well people have it in their heads MS = wheelchair and not walking… WRONG… lots of people with MS never ever go into a wheelchair.

Personally i wouldnt bother you know you have it. Why not get some leaflets about it, and just leave them about for them to read, so they may educate themselves.

I felt like this too. I never had a diagnosis of MS, i was told i might have it and i was never treated as thought i was ill perhaps because i was too capable. I wont let things get me down and just get on with my life, so when the letter finally came with a full diagnosis i scanned it, and sent it to my family lol… Just said i think you should be aware I have MS, and when i say i cant attend a wedding or gathering you will now understand why… it was a nice chatty letter, but they have changed their attitude towards me, and are always ringing me now to make sure i am ok lol. As if things have suddenly changed they havent, i am the same before label as after it. Still one has to humour them.

I just wonder if i had pulled the covers over my head and stayed in bed for 10years they may have taken me seriously, but hey i am not about to let MS take over my life whilst i can still do some things i will MS doesnt mean the end, it just means a different way of dealing with our lives.

Wait until you have your scan, then when you see your neuro ask her nicely if she can write a letter of confirmation of MS, tell her no one believes you, and it sounds as though you have a lovely neuro and I expect she will do that for you, then either frame it and put it on your wall, or do what i did, scan it and send it to friends and family but do it in such a way its kind of humourous…

Some people just dont understand what MS is, even neuros lol. xx

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I think that is a brilliant way to deal with non helpful people who are in denial about our conditions.

Crazy Chick…why are you not a politician or a stateswoman of some kind?. You have got such a level head on your shoulders

AND you call a spade a spade…are you a Yorkshire lass by any chance!

And what`s your name? I dont like calling you Crazy Chick!

luv Pollxxxxx

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Hi Poll, no not from Yorkshire hun, i was born abroad i am a flying baby (RAF), been all over the world, met loads of fab and not so fab people in my life, and I am a believer in cutting out all the BS people tend to write or talk about and just get to the point lol. Life is way too short at my age to have to try and decipher crypted stuff.

Being in limbo land for about 10 years i think i have learnt an empathy about how hard life is with MS, and I have learnt to deal with mine. I try to be diplomatic but it doesnt always come over that way lol.

Rosie is my online name i am the crazy chicken lady as I have bantam chickens they keep me sane. My neighbours call my CC as i am lol.

Not sure about the level head on shoulder bit though lol, maybe it just comes from experience, and listening to people, and being a good communicator. I love people i really do, i have met some of the kindest, some of the worse specimens, well hell all kinds in my life, from all walks of life, and i always try to see something good in everyone. There usually is even if they dont realise it themselves.

Thanks for such kind words, without my Internet and meeting lovely people like yourself i think i would be even more insane then I am lol. xxxxxxx Rosie.

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Hi Janice, I’ve experienced just what you’re talking about myself. I’ve been called a hypochondriac numerous times, both before and after diagnosis, even by a couple of close family members. In fact, many many years on, some of 'em still think the same. Of course, most people only see me when I’m well and out and about, not when I’m stuck in bed peeing into a bottle and feeling like… well, you know what, but that’s just how it is.

I bought a copy of one of my MRIs (£10) showing so many lesions it looks a bit like the sky at night. I’ve shown it to those who matter to me, feeling like a prize winning hypochondriach as I did so, but they were actually fascinated. Why not give it a try?

Ben

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