@Aaron_Holden

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Aaron_Holden

Recent diagnosis

Hello everyone. I just wanted to say hello and maybe get any useful info from anyone who may have had similar experiences. Firstly I want to point out that I am not suffering badly and am well aware that I am more fortunate than many so really don't want any sympathy, just thought my story might be of interest and some might be able to relate to. I am 43; a father, a professional and generally have been healthy throughout my life. I had always just thought I was incredibly clumsy and found it almost funny that I frequently stumbled and couldn't tie my shoelaces without nearly falling flat on my face. Then earlier this year I woke up with pretty severe double vision. Again, MS was the furthest thing from my mind, I thought I had maybe had too much screen time. Covid19 has left me working from home since march so I had been working long days. After seeing an opthalmologist with no diagnosis I had an MRI scan and was eventually advised I might have MS but to wait for an appointment with a neurologist. Again, Covid19 played a part in my story and due to the NHS being so busy I heard nothing. After 8 weeks with no contact, I decided to take advantage of my private healthcare plan and was able to see a neurologist privately and received my official diagnosis within a week. Interestingly, an MRI scan I had in 2011 prior to some mastoid surgery also showed lesions but they were missed. Suddenly many things make sense; my clumsiness, numbness on the left side of my body (always thought this was sciatica or similar), poor hand/eye coordination (sometimes), insomnia. I guess I have endless questions but the obvious ones are things like... Is it likely to get much worse? Do I talk to my employer? Will medication help with symptoms? If you have made it to the end of my long post, thank you for taking the time to read it. I really look forward to reading anyone else's stories and any advice, tips or experiences you lovely people may have. Thank you. Aaron

DesN

@DesN

@aaron_holden i found it interesting to read your post... my experience has been similar to yours. Lots of weird bits and pieces until diagnosis when it started to make sense! Cant really offer you any advise on if and when it gets worse as everyones journey if different however my advise would be to def talk to your employer.I did when diagnosed after a week in hospital and they were very understanding.. I work for a large organisation and had an assessment with occ health which was useful. My employer is bound to allow time off for appointments etc and allow me to work from home when necesary. Only down side is when your boss looks at you and says 'but you look fine' 😂😂😂 not sure if this is helpful but good luck for the future

Aaron_Holden

@Aaron_Holden

Thanks @desn that's really helpful. I have told my boss but not HR yet, he gave me the same advice. And yeah, I know I look fine, turns out I've probably been this way for years. Like I said in my original post, I'm a fortunate one and some people aren't so lucky. Thanks again for reading my post and taking the time to answer.

Vixen

@Vixen

Hello @aaron_holden, welcome to Shift. My initial testing and MRI was through private care too, although I went back into NHS care for the diagnosis etc as that's where the most specialist doctors are. Do you have an MS nurse, and has treatment been discussed? As mentioned above, it's good to let HR know, although you don't have too. An Occupational Health assessment is great, as they can discuss reasonable adjustments that might be called for if things change, or if you have a blip. Your positive outlook will go a long way! Most people with a diagnosis would tell you that it probably takes a year to get used to, and absorb the diagnosis. When I look back on my last three years since dx (at age 50) I would say that Yr 1 was spent recovering (emotionally, trying to add a gentle exercise routine to maintain strength). Yr 2 was spent restructuring; for me, this involved planning to move to a different city in order to jettison the mortgage, work less. Yr 3 was spent refining things, looking at the small print of my life path. All in all, being diagnosed has had some upsides; being more appreciative of smaller things, improving my diet, better at organisation (a real challenge!) etc. Anyways, hope you enjoy Shift, have a great weekend :-)

Stumbler

@Stumbler

Hi @aaron_holden , you ask some obvious questions :- - Is it likely to get much worse? That's the $64k question, one of which we'd all like the answer. Regrettably, there is no answer. The only predictable thing about MS is it unpredictability! So, your guess is as good as ours. We believe you can influence the progression of our condition by following the advice already given above. - Do I talk to my employer? It seems that you may have superseded this question. But, it is wise and you obtain the protection of the Equality act 2010. All of this will ease certain situations, e.g. time off for related appointments. - Will medication help with symptoms? There are certain medications which can help with symptom management. But, then there are Disease Modifying Therapies (DMTs). These are powerful medications which aim to protect from further progression and gaining new, or worsening, symptoms. It's all very much a learning situation and we'll be here to help your education.

watsoncraig

@watsoncraig

Welcome @Arron_holden 👋. Any questions ask away and we will try to answer.

Aaron_Holden

@Aaron_Holden

Thank you so much everyone, sorry for not responding sooner, I've had a hectic day to say the least. @vixen - I do not have an MS nurse yet, like you I was passed back to the NHS (like many of the neurologists, he jumps between private and NHS ) he recommended I took that route for further treatment, so I am still waiting. I have emailed HR today so will hopefully have a chat with them next week and find out what my options are. I was hesitant at first (perhaps a bit paranoid) as I didn't want to be considered a risk and for things to slowly slip and responsibilities be taken away. It sounds like (from your comments and @stumbler) this is a wise move for my own protection. My job is quite high pressure but I have a nice quiet space to work and it's pretty much at my own pace so I am very lucky in that respect. I am trying to remain positive, at the moment I feel fine, I've have always been a bit on the clumsy side and have a fairly healthy lifestyle. I run daily and have a bunch of kids, one severely autistic, so they certainly keep me active and in good spirits. Thank you @vixen for the useful info and feedback. @stumbler Thank you, I know it is an impossible question, if nobody had told me I have MS I might have continued thinking these symptoms were just signs of ageing (I am 43 now - today in fact). As I mentioned above, I will be talking to my employer. It is a very large company so I am sure they have dealt with this before and have processes in place. I have read a bit about medication, I do my best to avoid Doctor Google but I think it's unavoidable sometimes. The main issue it seems is with my eyesight in my left eye, as I said in my original post, I had pretty sever double vision which was classed as "6th nerve palsy" but recently have noticed the vision in my left eye has been blurry (almost smokey), I am hoping it will pass but I guess that is where the "will it get worse" question came from. Someone told me the GP may prescribe some kind of steroid to strengthen the nerve but I will wait until I can see the MS nurse. I will of course feed back here and reach out if I need any more info. Thank you @stumbler, your information has been really helpful I really appreciate this forum and hope I can be as helpful as you guys in the future. Aaron

DarrylT

@DarrylT

Hi @arron_holden Sorry to hear about your diagnosis, but welcome to the club. As others have said, 'will it get any worse?' is the $64000 question, and I thought I'd share a bit from my recent experience as it's not a million miles away from where you are. I've got a few years on you - I'm now 58 and was diagnosed in 2017. I'd had a bout of optic neuritis in 2011, and although MS was discussed (as there is some family history - my older brother had PPMS and was unfortunate to be diagnosed long before there was any kind of treatment), it was thought to be unlikely. Ongoing problems with my hip and knee (accompanied by an impressive limp) were investigated and initially thought be related to slipped discs, but that didn't account for the feelings in my left arm and hand (heaviness and lack of sensitivity)- upshot was, a couple of MRIs later, MS was diagnosed. Work-wise my situation was different in that I was nudging towards retirement and my diagnosis helped me to take the decision to retire a year or two earlier than planned. So, telling colleagues was slightly different, but I would definitely say be as open as you feel you can be, you will almost certainly be warmed by people's understanding and compassion (yes, there will be people who want to tell you that their friend's uncle's next door neighbour has MS and they seem to be fine, but they'll be in the minority). Will you get worse? Unfortunately this tends to be the nature of the beast, but if someone had described when I was diagnosed how I'd be three years later I would certainly have taken it - my walking is worse, stairs are a pain, getting up a ladder to do household jobs is still possible but usually with a support team in place, and I have more of a tendency to be clumsy. Pins and needles in most parts of the body at various times and things likes spasms and cramp are more common, But, I can do most of the things I could do before and I wouldn't necessarily have expected that to be the case three years ago. I've been on Tecfidera since Jan 2018, and I don't know if it's holding things in check or if this is how it would have been anyway. I'm due to see my neuro next month and I'm always open to conversations about other treatments. You will be told that MS is different for everyone, which is true but very frustrating when your MS nurse / neuro don't seem to be able to tell you anything useful about how your MS is likely to progress. I was told that you should regard yourself as newly-diagnosed for about 5 years, because it takes that long to understand what your own MS looks like - and I'm beginning to see the truth of that. If you can (if they're still running because of COVID), get yourself on a newly-diagnosed day run by your NHS trust - this was brilliantly informative, input from a range of specialists and gave me and MrsT a real insight into what to expect. Good luck with everything.

ItsMewithMS

@ItsMewithMS

Welcome to our exclusive club no one really wants to be in ;-) but we are here together and supporting each other. There were many little signs that I discounted to other things until the MRI was conclusive that I had MS in 2005. There wasn't much available for treatment then and I was put on Copaxone. It may have helped some but I continued to have a few attacks over the years, not bad and quickly resolved with steroids but the damage was done - the lesion is there. I've stopped having attacks but my condition slowly deteriorates...I can still get around and when walking longer distances or on uneven ground I use a walking stick- so really that isn't too bad and I count myself fortunate. I've been bumped to Ocrevus for the last year and MRIs are stable. For me Maintaining status quo I am happy with ;-) It's good you found this group for support. I've been hanging out here for about a year and love the great exchange of support and ideas from people all around the world impacted by MS as an individual or a caregiver. You can ask anything ;-) someone has been there! There are a lot of tags under your post and if you click on them you will see posts of that topic and you can search any others using the looking glass in the upper left or look for people using the head in the upper right. You can "friend" people to have private chats and call out to someone by putting "@" in front of their nickname. If you want to learn more stick to credible sites like the MS Societies, Barts or some of Dr Boster's You Tube collection- This is his message to the newly diagnosed but he covers all the various DMTs, diet, exercise, MS hacks, etc. good stuff https://www.youtube.com/watch?v=wvQXygHtYzc&t=119s

Stumbler

@Stumbler

@aaron_holden , your GP may consider giving you a course of Steroids. However, this would probably be at such a low relative dose as to be ineffectual. GPs are just not familiar with the incredibly high dosage given to MSers. See the following :- https://www.mstrust.org.uk/a-z/steroids-methylprednisolone

Icarri

@Icarri

It's a similar case as mine, I'm 43, parent of two kids, CEO of a big internet company in Spain with a very active life, traveling, runner, etc. I had double vision in 2014, after visiting several doctors I ended in a neurologist that afteand MRI told me that it might be MS gave me some oral prednisolone and asked me for the spinal tap and other tests, but as I recovered my vision in 1 week, I decided (wrongly) to not to have any test done and ignore it. For the next years I had some weird minor symptoms from time to time, like feeling an spam in my spinal cord when i looked down (now I know that the L'Hermite syndrome, typical in MS) and some needles in one side of my body that went away by themselves. Again I ignored it even knowing that it might be MS. 2 months ago I woke up one morning feeling my left leg and arm numb, having difficulty to coordinate them. I thought it was bad sleep but after 3 days I decided to go to the hospital and this time I told the neurologist my fears. I was done a new MRI that discovered one new big scar in my brain and one in my spine, was done the spinal tap and both confirmed it, I have RRMS. I expend 5 days at the hospital under huge dosis of methylprednisolone and almost fully recovered. Since then I have been felling better, the first days I still felt my left hand a bit weird, when typing on the notebook for example, and also my left feet felt less strong when I trie to run, so I started just walking. Now 2 months later I'm running long distances again and having my normal life (on holidays). The doctor told me to start on Tecfidera as soon as I came back from holidays, that will be next week. Hope the side effects won't be so bad. Of course it's been a big hit, I wonder how it will affect my life, I'm worried about my kids and wife future if at some point I can't be as active as now, if one day I won't be able to run or even walk but... I have accepted it as I'm usually worried about the things I can fix, if I can't what is the point of being worried or telling myself how unlucky I am? I'll take the meds, I'l eat healthy, I'll try to practice sports as much as I can to delay it, I'll try to be less stressed by work and enjoy more of my family, but at the end, these are the things that everybody should do and the only difference is that we know that we might be disabled at some point or even die sooner than the average, but we don't know it for sure or when, the same way that nobody knows if tomorrow they will have a car accident and will get disabled as well and you can't stop to enjoy life "just in case it happens".

Thorpee

@Thorpee

Hi @aaron_holden, like you I had relatively minor issues which I largely ignored but went to the doctors a few years ago when I developed a painless limp which turned in to foot drop. They were chasing the cause of this foot drop up and down my body with various tests over the last few years and after some MRI scans of my brain and neck here we are. I told my employer, it made sense to as I'm a Police officer and there's never been a more risk averse organisation to work for. I expected them to sit me in a dark corner and never let me out again but they have been fine and have made a few relatively minor adjustments so that I can keep going on response until/if I feel like I can't any longer. I've been taking tecfidera for a couple of months now and have had no major problems with it. I was actually quite relieved when I got my diagnosis to finally know what the problem was. My colleagues always found it hilarious that I always tripped over non existant objects and I insist that those who know what's up still take the pis# when I do.