Last reply 1 week ago
Newly diagnosed

Hi all. diagnosed ten days ago after six and a half years of testing. Third in the family to get MS and struggling to cope with it to be honest. Already affecting my work as I’m a Bobby and can now expect to not ever be able to respond again. It’s like my legs have been taken from under me. Anyone else really really struggle with the diagnosis?

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lori123
2 weeks ago

@mcikhael
I know how you feel!! I scream I want my legs back!!! That is the hardest part of my diagnosis. The doctor said that I had MS for at least 15 years!!! I went untreated. I am just trying to stay out of the wheelchair all the time.


mcikhael_stoo-art
2 weeks ago

Yeah I’ve been waiting six and a half years knowing what it would be but having to wait… Should he happy I now know what it is but it’s pants isn’t it?


itsmewithms
2 weeks ago

Yours is a common theme if you use the magnifying glass in the upper left and search some of your tags, newly diagnosed, there will be many entries. Makes me feel relatively luck that I had some instances of CIS that quickly resolved on their own in the years before diagnosis but the first big symptom, my foot sticking out at a 30% angle when walking, was diagnosed quickly and I was put on Copaxone 15 years ago.

We do have to adjust our expectations and our life and there is a time of rethinking for each of us. You will also see that reflected in the posts.

You mention that other family members have also been diagnosed. They may be a good resource for you as well as the members on this forum. There have also been posts about possible causes of MS and if genetics play a role. You will find more posts related to that if you search. How your siblings reacted to various treatments and their progression may also be helpful information for you and your doctors in your treatment.

Welcome- and good luck- accepting and working through initial diagnosis is hard-


stumbler
2 weeks ago

@mcikhael_stoo-art , receiving a diagnosis of MS is a shock to anyone, whether it is expected or not. So, just give yourself time to get your head around it.

You need to assess the impact on your role as a “Bobby” – and don’t we need you! I’m sure your bosses will accommodate you if your requirements should change over time.

But, that’s for the future. For now, sit down and take a breath and assess where you are today. MS is no longer the disabling condition that it used to be. Just live healthily, eat healthily and be mindful that stress is bad for our MS.


rel12
2 weeks ago

Hi @mcikhael_stoo-art !

Wow I could only imagine how that was. Waiting six years would drive me insane but must feel good that you finally have an answer. I am not too sure what a Bobby is but MS affects jobs & a daily routine for sure. When I was diagnosed, I had just started a new job after I had graduated college. My symptoms were acting up & when I had gone through many doc visits, MRI’s just gave me an answer to many years of weird things tht were happening. I was a bit in denial but went through an emotional stage (who doesn’t, it’s normal). I knew I had to take action knowing there will be some adjustments in life. Just remember everyone has a different story, so you got this!


itsmewithms
2 weeks ago

@rel12 I’m in the US as well and when I read the post I assumed a “bobby” was like a street policeman? I could see how the demands of that job between the mental stress and the physical demand could be a bit daunting. They could also be very rewarding and very much in demand.

Kind of reminds me of when I was a cost accountant working with a plant. On my feet, traveling a lot from plant to plant, always very busy with computations, forecasts and budgets, plant improvement plans, etc. I enjoyed it and then one day the company made the decision that a whole set of plants and people (8000 of us globally and 20 sites) were being spun off to a new to be formed company. WOW. The earth shook under my feet. That was before I even knew I had MS.

Within months I was moved from the work world I knew to become a systems expert as we needed to transition from the 480 systems they could find we were using onto a new ERP solution. I was moved to that team and that became the best work I ever did! Once we moved from all those disjointed legacy systems onto the new system (Oracle) we were much more efficient and better overall.

I’m not suggesting you become an Oracle expert ;-0 but that your skills and experience could be used in a way you find even more fulfilling. By moving from the day-to-day work of being a cost accountant I put in a system, policies and procedures to help the entire company in the area of cost accounting and inventory management.

Maybe this isn’t something you have to do immediately…but think about how your skills, experience and interests can be used in other jobs. Jobs that will be less physically demanding and less stressful for you to manage your MS the best you can.

I didn’t think to change my job at the time of my diagnosis as I really didn’t have to . I was still very physically capable but now realize that I am a mental stress junkie ;-0 and that probably isn’t really good for me…I’m now looking for something more in the data management end of ERP systems that I know I would be really good at but won’t be dealing with the stress of monthly financials and decision making.

There will be something in your field like that. Maybe more like dispatch or case work? A transition may not be required immediately but training and development in that direction may be helpful. In the US they need to accommodate us when and how they can. It could be a discussion you have with your boss or HR if you trust them and you think they would have some options for you. There may also be opportunities in private security or in security systems or something. Your skills and experience will be applicable to many careers that you may find as satisfying, or more so, and you can feel you can manage now and in the future.


laura-forde
2 weeks ago

As a newly diagnosed person you could be vital in spreading knowledge of the disease and disability to the police community. There’s so much ignorance out there in all walks of life I am choosey about who I tell as I’m sick of the bad stories


mcikhael_stoo-art
2 weeks ago

Thanks for the replies ladies and gents. For you that don’t live in the UK yes a Bobby is a policeman. Front line attending our emergencies. Laura, I agree even before I was diagnosed I suffered from some serious ignorance about disabilities but I’m openly talking to everyone I can about it to try to help change this.

I’m using my family as a good source of info but the health service has told me nothing about what to expect service wise and no timescales. I’m just trying not to stress about that and to take it a day at a time


doubleo7hud
1 week ago

Ey up matey your story sounds similar to mine (apart from the bobby bit, I used to be the one being chased 😂 sounds like you might of been the one chasing me as was never caught in my youth 😂 (long retired now from me minor local crime wave after having kids and being a disabalist (growing up to a degree)).

anyway moving swiftly on 😂 your “story” sounds similar to me and your stuck with a set of floppy dildos for legs. I was Diagnosed about 3 years ish ago now I think and at the time I was on two crutch’s struggling to stay up at all, couldn’t drive at all and was stuck being chauffeured around. I too was clueless about disabalists and different forms of it did not know anyone really with a disabalist ability. Now I make a point of stopping and avin a waffle with people it’s a eye opener when your used to be completely fit and healthy and all of a sudden thas int same boat. Which is a shame really there just people like us (me now) I would say tho avoid the angry looking ones 😂 there in pain and can be a bit crabby, iv been there too 😂.

My approach is fight the fecker head with me little cheeky Yorkshire smile, and sense of humour and determination. I’m driving again (a manual car too for now), and just use one stick for balance so I can get about. It’s been a slog but iv managed to not have much time off work and plow through it, blink and 3 years past. I would say tho make sure you make it to all your appointments, and physio as I missed a lot as I was too busy with the blinkers on working so I can keep the baby’s in there tracksuits and gold chains 😂. I’m sure I’d be better off if I managed to make them all and I listened to the doctors about rest and taking it easy. You live and learn 😂


doubleo7hud
1 week ago

You’ll get there again matey if not be summat like keep your cogs ticking and your eyes on the prize. If you need anything mate just ask and we will all help thee aht!!!

Peace aht!!! ✌️ big up thee Sen 😂


doubleo7hud
1 week ago

PS and don’t worry I don’t really think I was your criminal nemesis, it’s alleged a few plant pots went missing, and wheelie bins were used as hill sledges 😂 etc….. *coff coff maybe a few other things allegedly.

MUU ha ha ha (dr evil finger in mouth thing)


vixen
1 week ago

Hi there @mcikhael_stoo-art. Welcome to our very exclusive club! Top priority I’d say would be to focus on diet and sleep, as well as allow yourself the mount of recovery time you need. I mean, recovery in terms of the fact you have a diagnosis. It probably takes up to a year for most people to get used to the diagnosis really, and work out what impact it has on your life.

Your role is vital and necessary, but it might be that the way it plays out will need to change. But that’s OK, because you will still be upholding the amazing service you guys provide. As priority, you should ask for an Occupational Health Assessment. This will give an official stance for any adjustments you might need, even if temporary. They will also be able to talk to you about what might be useful to think about for the future. I am a few years older than you and recently dropped to part time, after twenty years in education. Being supported by an OH Assessment meant that I have been able to pretty much design my own work life and it’s working out really well. All the best, stay strong x


ruggermad
1 week ago

@mcikhael_stoo-art

What type of MS have you been diagnosed with? RRMS or Progressive?

Being diagnosed is a massive head f*ck to get your head around. You need to maintain some perspective and focus on the moment and overtime things WILL get easier and more manageable.

Take it easy

@doubleo7hud hahaha thanks for that. One less nemesis for me to run after. (I did try but running never was my strong point even before this all kicked off!!) (Too many donuts, cakes or biscuits methinks!!)

Taking my time to get used to it. Trying not to get annoyed with the fatigue and how long occupational health take to let you see someone and trying my best to talk it through with the missus so she doesn’t over worry

@ruggermad I’ve no idea. The consultant was rubbish. Said she was “happy” that it was MS and that she didn’t need any other tests. (Said the 10 lesions they found since the last MRI plus a dip in health was enough). Now on the waiting list to see the MS nurse with no idea how lobg before that will take place


ruggermad
1 week ago

I guess you can kind of work out where your diagnosis might be heading if you can recall any other issues you may have had (MS wise) and those previous symptoms/ episodes “cleared up” and you recovered, this would more than likely point to relapsing remitting MS.
On the other hand any episodes you have previously and not recovered, for example a limb going numb and the symptoms remain and not improve, would possibly point to a “progressive” diagnosis.

The diagnosis process can sometimes be long, it’s not always, but the wait for treatment (funding through the health care trust paying for it mainly) can also be time consuming.

“The consultant was rubbish” ha ha, welcome to the cheap seats…………… I can relate that comment to my own experience with the healthcare professionals. You need to get yourself in a position to look after and maintain MS yourself.

Things will get easier, it just takes time.


stumbler
1 week ago

@mcikhael_stoo-art, if you don’t hear from the MS Nurse in a week, then be proactive and give them a call.

@stumbler I will be ringing them monday as it’s been nearly four weeks already. @ruggermad I think it’s relapsing remitting but then it throws me as my hand is numb constantly so then I think progressive. The wonders of the world of weird that is ms eh?


doubleo7hud
1 week ago

It is bloody weird mate just wait till you start coff, sneezeing and farting all at the same time.

@doubleo7hud hahaha I saw your post. Already ticked that off my bucket list ….


doubleo7hud
1 week ago

Well feck me in the eyes twice, you mastered the art after just 10 days it’s took me 3 years to get that one under me belt (pun intended ish???, not sure if it works tho meh!) thas got a feelin thas gonna be alreet grasshopper 👍

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