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Been diagnosed a month, feeling lost

Hi, I’m new on here, I have been reading for a while but this is my first post. Im 27 and was diagnosed with MS on 15th may after an MRI and lumbar puncture. My partner is being supportive but can’t quite understand how low I feel. My mum has MS so I do understand it. She was diagnosed 18 years ago and in that time has had one follow up appointment. She is unaware of what can be offered to help symptoms. My neurologist doesn’t know what type of MS I have, to say he wasn’t helpful is an understatement. He said at my appointment that he’d put an MS nurse I touch with me. That hasn’t happened, I’ve had to ring and chase and have an appointment next week to see them. I’m going to get my mum to be there so she can get some advise as well. What id like to know is how do others cope with the diagnosis? I have put my head in the sand and went to work the next day like normal until I cracked after about 2 weeks and burst into tears as someone had written a date wrong!!! I’m now having a few weeks off. My supervisor at work is awesome luckily for me. I’m struggling with everything as I’m a very active person, my job involves working nights and can be rather physical at times. I have 2 horses and regularly compete at quite a high level. Friends and family are telling me I have to cut down and be less active but I feel this isn’t necessary. What do others do? I just want to keep ‘normal’ yes I get tired easily but I can cope with this. I know I’m going to have to change my role at work to a more office based one and this really upsets me. How do others get on? How do you cope? Also how do you manage others? As I feel this is one of the hardest things to do.

Hi ajm,

I am 51 yrs old, I had my first relapse when I was about 24. I was mis diagnosed but didn’t have the next relapse for 10 years,and the next 8 years later, when secondary showed its face. Until you get a definate diagnosis try to remain positive. If you start letting ms take over, all it means is it drags you down and it does not care.

If you need someone to talk face to face with you and your family, please get in touch with your local MS Society branch, they have trained volunteers waiting to help you get though this stage in your life. Your life isn’t over, it just needs adjusting abit. You can still have dreams and wishes.

Hope I’ve perked you up.

Yours

Andy

At the moment you are emotional that is to be expected but if you have been doing your job and your riding without any physical problems then continue. I have had symptoms for over twenty years and this is only the third time I have had to go sick from work, unfortunately it’s also the last as I know I won’t get back to work this time. When diagnosed my consultant told me to go away and live my life as normally as my symptoms allowed, my advice to you is the same you may be lucky as I and many others are/have been Has your mums ms made much difference to her life? I imagine not if she hasn’t had to have much contact with the medics. I do have an ms nurse but I have only seen her a handful of times, I ring her more than see her. The consultant who diagnosed me has retired and I haven’t been allocated another, reading these boards I don’t think your mum and I are alone in this. Having said that do mention your mum to your nurse when you are allocated one. It’s a hard time for you but please don’t be frightened by what you read or hear. The majority of people here are the ones whose lives are affected by ms, those who’s lives are rarely effected aren’t here. Best of luck Jan

I was diagnosed in January, had one day off work then got on with things as normal. In late March reaction set in and I took a few days off to hide away, feel sorry for myself, cry and start to come to terms with it. Since then it has been business as usual most of the time.

If you feel you are coping with work, horses and everything without getting too tired, carry on. Learn to listen to your body, rest when you need to, but MS is not in itself a reason to give up activities you enjoy as long as you can still do them safely. If I don’t slow down from time to time, my body slows me down. Last time I overdid things, I just ground to a halt, rang in sick to work and slept about 24 hours out of 36. That was the recharge I needed and also the warning to pay attention to my body.

I don’t have horses but I run a Guide unit and am going to Guide camp for a weekend next month. The only concession to MS is that we’ve hired the site’s mobility scooter to see if that makes getting around easier. It’s a big place, campsites on top of a hill, most of the activities at the bottom. The scooter should mean I have the energy to cope with everyting else that goes with being a leader on Guide camp!

Best wishes.

Thanks everyone. My mum has only just stopped working full time, more because she got made redundant than anything else. She hasn’t had any contact with professionals as she doesn’t have many relapses or anything and my dad is really supportive of her. I am just going to continue like normal but as people have said, try and listen to my body and when I’ve done enough call it a day instead of trying to cram 6 million things into my day. I’ll never give up horses but may go done to just the one as it’s hard work keeping two competition for and working full time. I think it’s a case of making small changes and not letting it win. Feeling far more positive today thank you!!