barn-y 13/01/18
Last reply 3 months ago
Hello MS Folk

Hello there.
I wanted to reach out and just start a conversation.
My story is that i was diagnosed last March after a number of years with various tests leading to March 10th confirming what i pretty much expected.
Symptoms started in 2002 with pins and needles in my left arm and hand which was considered as probable trapped nerves….being a typical bloke – things didnt get any worse or any better so i just got on with things. What i didnt know was MS had been noted in by GP as a possibility.
Over the next 15 years symptoms came and went – the one thst caused me the most pain – ms hug. Some symptoms(happy to share) came and decided to stay. Mainly arms and legs with numbness and pins & needles.
I feel lucky that my symptoms don’t stop me doing anything. I find my symptoms are more inconvenient than debilatating. I run and play football regularly.
Mood swings are something im aware of….though some may say im just a grumpy sod anyway 😊 so i work on being optimistic and positive. Sometimes just have to switch off though.

I’ve only told my other half – who has been at the various appointments with me over the last couple of years. She probably asks more questions than i do so having her support is great. Telling others is the thing i’m still ‘planning’. When to tell and who to tell is the thing i’m struggling with. I don’t want any drama.
I’ve been keeping a video blog recently which i’ll share some day and it might help others understand my perspective better.
I’ve been taking tecfidera for over two months now. No significant side effects. Flushing is the thing i get that passes. Dry mouth- so always have water near-by. Is it helping? Who knows! I am improving what i eat. More fruit and veg and less red meat. Taking vitamin D each day as it seems to be the thing to do 😊
So that is my story. If you want to get in touch i’ll be chuffed to hear from you.
Stay cool. 😎

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vixen
3 months ago

Hi there, assuming you’re in Perth Schotland and not Australia???? I know what you mean about disclosing to other people. I haven’t exactly gone public after diagnosis a year ago. I kind of don’t want for the first thing people think about when they see me, is my diagnosis. Also what I’ve found, is that when I have told people, as it’s such a shock, I have to water and play it all down a bit, because I don’t want them to be upset. It’s so weird to have a chronic illness. We’re not dying, for the most time, you could appear as though there is nothing wrong at all. And at the same time, it’s a bit like living with a sentence. Or, perhaps being on parole! You say you don’t want any drama around telling folk, so at least when you do, you’ll be able to play it down as ‘…..turns out I’ve had it for years….’ kinda thing.

Anyways, we are all in it together and forums like Shift are great, because we all understand what the other is going through. I’m on Tecfidera too and it’s going as well as it could be, touch wood. Take care, good to ‘meet’ you x


henriette
3 months ago

Hi there. I did not have any knowledge about Ms when i was diagnosed Dec 2016 after 30 years of symptoms presenting itself and dissappearing again. so i did not know whether to be ashamed or not, until i asked the neuro whegher i did something wrong or should i have done something that i did not, or was there something i could have done to prevent it. Luckily i stay in a small town and people thrive on gossip so by the time i got home from hospital, almost everybody already knew. I think currently we are only 4 people with the illness that is known. So that made the revealing part much easier. But i googled the hell out of google about the illness but the need to hear what people in the same situation is saying with first hand knowledge was overwhelming. Praise the Lord for this forum. I had so many unanswered questions but i got a lot of answers right here. Do you guys know what is the average duration that you can have a fairly normal life with the illness, because it seems i’ve had it since the age of 18, so 31 years and i think i am not doing bad at all. 😄


spangle
3 months ago

Hi @barn-y

I had a similar journey in that I was diagnosed last year but when discussing symptoms with my neuro realised that I’ve been displaying symptoms since 2003. I’ve had issues with numbness mainly in arms and legs, the 1st instance I went numb from the waist down, which lasted around 3 weeks. It was all put down to trapped nerves or sports injuries so I didn’t think anything of it.
It’s only the past two years where it’s really caught up with everyone.

Since diagnoses I’m happy to tell people face to face that I have MS but I’m not the type to put it on social media. I say that but one of my new year’s resolutions is to fight back against my symptoms by increasing my exercise. I’ve entered a half marathon in October to give me something to work towards. I then put my fundraising page with my story on Facebook so now anyone who cares to know can. I find that it’s been a weight off telling my friends and family as now they understand when I say I’m too tired to go out or do things. We now make the most of the times when I feel well enough 😊


rubyroo
3 months ago

Hi @barn-y,
I completely understand when you say you are still planning to tell people about your MS, and don’t want any drama. My symptoms also started in 2002 and I have been relatively ok until the last year or so when my walking has got a bit worse. I still haven’t told many people about my MS, only some family members and VERY close friends. I don’t want drama, I don’t want people to get upset and I don’t want people to pity me. Part of me feels ashamed of my MS and I suppose deep down I am still in a bit of denial and angry about the whole thing. After 16 years it hasn’t really got any easier for me but I am coming to the point where I am tired of pretending……..
I hope you continue to stay well. 😊

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