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Can anyone relate? (recently diagnosed)

Hi,

My symptoms concern me. They come and go from day to day and seem to be getting slightly worse, though not there all the time. When you have developed symptoms e.g. difficulty walking on one side. Is it normal for them to present EVERY time you exert yourself or get hot. But subside when you rest and cool. I never get a period of complete recovery nor have I had any specific attacks.

I have two occasions in the 3 years since seeing the neuro where I can notably say I have new symptoms though I have never had recovery from these symptoms. They are always there whether mild or bad. About 80% of the time symptoms are mild then 20% of the time bad and I need either assistance or my new thing… the walking aid.

1 month since diagnosis and still nothing in the form of support. I emailed the neuro who today in response asked if there was anything he could do and gave me the name of the MS nurse though no contact details. What the?!? I’ve not replied as I may get angry and as my prognosis is in his hands, so to speak, I don’t want to get on his nerves.

Anyway, I think this forum is great support and I’m glad I found it!

Nikki

I just got diagnosed on Friday Feel so alone don’t know what to do

Hi Nikki, get in touch with your neuro, or the secretary, again & explain that you have no contact details for the MS nurse. No need to get mad, it might have been accidental that the details weren’t included, ask again.

Rosina x

Hi Paul, you’re bound to feel shocked with your diagnosis, it takes a while to sink in. Were you given any details about an MS nurse to help guide you through this? You’d maybe want to talk about various types of drugs that could benefit you. If you haven’t been given any info it’d be worth contacting your neuros secretary. If you post on Everyday Living you’ll get lots of people to chat to, please don’t feel alone

Rosina x

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How ya doing zombie ??? Still early days… Hello Paul. Welcome to the nightmare. …to kinda nick it from Alice… One thing you never are on here is alone. Whatever your symptom(s) are, chances are someone’s gone through it. Don’t be afraid to ask questions, no matter how strange… Very early days. Sorry you’re in our boat dude, grab a paddle. …

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Hey people,

Thanks for replying everyone. I’m okay thanks carraboy. Having good and bad days physically though mentally good. Got myself my first walking aid for the bad days. How are you?

I have been in contact with my neuro twice since starting this thread, he has asked if I have any questions. Still no contact with the MS nurse, though now I have a name! Woohoo! Perhaps he will give me contact details next time I get in contact.

Hello Paul, welcome to the intially confusing world of MS. Hope your neuro has offered you some support at this difficult time. I got told I had MS at my last appointment and sent on my way. No offer of a nurse, asked how I feel about it or even a poxy leaflet. Nothing. It has taken several emails and now over a month just to extract the MS Nurses name from the neuro, no contact details though, very poor people skills Mr neurologist. You can’t drop a bombshell like that and send them on their way. Anyway, this has been the place where I have found some support. Its scary but try and stay positive, there is some great advice and just general support on here. Tell us a bit about yourself and your story :slight_smile:

Nikki

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Her name’s Woohoo ? Is she from Thailand !!! These foreign nurses… :wink: :smiley: , yes I know. … All good here thanks. Off to Norwich later once we fight the kindles off the kids… still raining, so should be fun ! At least we’re sleeping well !!! (School holidays = knackered stressed parents…) Hugs and ice cream… Andy

Hi Zombiesquirrel, just wondered if your MS nurse is based at John Radcliffe hospital at Oxford? My MS nurse is called Woo Woo or something similar. I was diagnosed on 1st May this year, then saw MS neuro and nurse in middle of July. So 11 weeks between diagnosis and contact with anyone. Let me know if it is the same hospital as I have the number for the MS nurses, and they are great at getting back to you.

Ang

Hi guys, thank you for your kind words much appreciated!. Just trying to get my head around my diagnosis.

Carraboy thank you for your welcome and the paddle has been well and truly grabbed buddy.

So here is a wee bit about myselfor then zombiesquirrel

my name is Paul I am 40 and live in the sticks in Scotland. My symptoms started around 1yr ago with my hands and feet going numb but now have many other ones. Eventually got referred and had a mri scan and was told on Friday that I had ms and that was it! Just told to go home and wait for an appointment and don’t look it up on the Internet ( which I promptly done when I got home) but I’m still none the wiser! All I know is that I have some on my brain and some in my neck and spine.

Does anyone know roughly how long it takes to get an appointment for the ms unit in Edinburgh?

I feel like I’m stuck in limbo! Sorry I’m rambling on…

Anyway that’s the story so far. I would be eternally grateful to you all for some pointers and advice.

cheers… paul

Hi Paul,

Im not sure I am much help but just wanted to say i know how you feel, my symptoms started in May with arm numbness and diagnosed last week, told to email if I want steroids and wait for my MS consultant/nurse to contact. I imagined that the support would be more slick to be honest! Feeling a major reality check! Hope you hear from the MS team soon, and dont forget to go to GP when you need help, support or to discuss steroids if symptoms start impacting you, i also found out yesterday you have to tell dvla if you get diagnosed with MS, hoo hum theres a nice form to fill in.

Take care (from the deep south of Dorset, but hey the weather here is rubbish too this week!!)

Nicola

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Is the neuro single or what? First rule of parenthood - You say don’t, and the child hears Go on, fill your boots !!! Don’t look it up online…gotta larf at that one…

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