Last reply 3 weeks ago
Does it get better?

Hi Everyone – I am newly diagnosed. I go in next week for my prescription. I am curious…is this it? My memory and brain are not functioning very well…is it just always going to be like this? I don’t think working anymore will be an option for me if I am unable to improve. My physical abilities have not yet been affected aside from fatigue and pain in legs and feet but it’s my brain not working that is upsetting me.

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vixen
4 weeks ago

Hello @adiwood, welcome to Shift! We have all been where you are now, and you are right in your profile in saying it’s one day at a time (as with life in general!)’ You probably feel up in the air at the moment. For most people struggling with a new diagnosis, the quest to find ‘the new normal’ is the main preoccupation. In truth, most of us would say that it takes about a year to fully process a diagnosis like this. Against the history of MS, now is ‘the best time so far’ in that there has been a rapid escalation of understanding, research and effective treatments over the last twenty years. And here you are. Briefly, the main recommendations for these early days: Don’t make any big decisions, you need to get your facts in order. Don’t google, always use sites like this, MS Society/Trust. Don’t overdo exercise but keep moving if possible. Eat and sleep healthily and don’t smoke. And, don’t write your life off; this is new, it’s a shock, but all your hopes and dreams are still open to you. Stress will have a really negative impact on MS, although it’s impossible not to feel stressed, I know. Reach out for help where you feel most comfortable. Take somebody to your early appointments to help you absorb and retain information. Don’t think about ‘not improving’ but focus on recovery; it might take time, but you will get there. Ask any questions you have to your MS team, doctor on here! The great thing about Shift is that somewhere in the world, somebody will be able to respond. All the best to you, deep breaths, yo got this…….x


adiwood
4 weeks ago

@vixen Thank you so so much. I didn’t realize how much a response would affect me in a positive way. Know you have spread some goodness out today ❤️


vixen
4 weeks ago

Bless you @adiwood. I was you three years ago, appearing on Shift for the first time! Btw, this site is generally a bit quieter at weekends, there’s less ‘traffic’. Enjoy the weekend x


fuzzy9
4 weeks ago

No. Your life is not over at all. I was diagnosed less than a month ago with PPMS (primary-progressive MS). It is known to be rare and serious type of MS.

I was quite broke for first weeks. I thought I was going to paralyze fast but still I am doing fine. I have learnt to be grateful every single day I am healthy. As the first writer said it most likely takes a year to process the diagnose but I personally feel way better after a month.

It helped me a lot to openly discuss my first experiences and symptoms with someone with MS privately. Feel free to ask or discuss about MS because it does relief your mind after the shock.


sarah21
4 weeks ago

Hi @adiwood, what you are feeling is totally normal, it takes a long time to process a diagnosis. I spent several months after diagnosis feeling like I had brain fog, struggling to focus at work, poor memory etc but I now realise it was all part of coming to terms with it and once I was less stressed my brain function returned! So please don’t worry, be kind to yourself and give yourself plenty of time, you can do this!


potter
4 weeks ago

I cried for the first two weeks and then I decided to do everything I could to slow this disease down. I started improving several weeks after started on Rebif, I still had days that weren’t so good. Rebif and I didn’t get along very well, Tecfidera finally came on the market and I started taking it. After getting past the initial side effects I felt like a new person. I was diagnosed when I was 55, I will be 68 this year I still walk not but as far as I want. I am heat sensitive and having trouble with numbness in my left hand right now. That’s about it for my symptoms, my doctor calls me his wonder woman. I am no longer on any treatment because of my age but I think the years on it really helped. Potter


amysimpson
3 weeks ago

@vixen everything you have said is perfect – great role model 🙂 @adiwood thank you for sharing your challenge – looks like we all relate so remember you are not alone <3.

Since my diagnosis, I give my brain a workout, just as I do my body with weightlifting/walking I use http://www.lumosity.com – everyday complete 5 random brain-workout games – helps me feel more in control, reassured, confident of my ability to concentrate/focus/remember/problem-solve – this supports me in my work life and in my home life. Good luck with finding out what is going to support you too – you can do it 🙂 xo


itsmewithms
3 weeks ago

When you were diagnosed did they check for an active lesion/inflammation? your MRI would have been on a new machine or with and without contrast. If you have active inflammation you would receive massive steroid doses (like 1G) over days that reduces the inflammation and for me, at that stage, reduced the symptoms like 80% in a couple of days.

But- regardless – the better you build your “reserve” through sleep, low stress, good diet, Vitamin D, hydration, exercise and stretching, all the good things in life 😉 the better you will feel. We all have better and worse days and try for as many good days as possible.

We also have lesions in different places and different sizes on our spines and in our brains so all have unique symptoms and MS affects us differently. The ones that trouble me are primarily on my spine and I find my gait most affected with drop foot and a heavy right leg. Others have vision issues or weakness in their hands. The symptoms I read about on this site are pretty varied.

But build up your reserves and give yourself a break to find your new normal…breathe 😉 and hang in there. Hopefully you come out of the fog-


underdog
3 weeks ago

Hi @adiwood

Things will get better, things MS related will also get in the way. Life will probably change for you a little but it’s important that you remember that you have the power to live with this diagnosis in a relatively normal way.
Life is hard, you have to be harder!
I am 7 years down the line from my diagnosis and I am doing well. I’ve had major ups and downs along the way but who hasn’t? I now take an oral DMT (Tecfidera) but I have also discovered CBD oil and that has helped with the leg spasms and helps curb my anxiety which due to my MS I suffer from now and then.
Things will work out for you, you need to accept your diagnosis and build yourself a network of supportive friends. Employment wise, keep going for as long as you can, work is the reason I still manage to live the lifestyle myself and my wife are accustomed too. We have two children, three dogs to support and it also helps pay for our Range Rovers. (Not bragging or anything but we work hard and play hard, because we STILL can)
A diagnosis of MS doesn’t mean you cannot achieve your dreams, you just have to look outside of the box and look at different avenues to achieve them.

“I get knocked down but I get up again” – Chumbawamba

Just noticed from your profile that you live in the best country in the world, so you’ll be fine…………


jamoranto
3 weeks ago

@adiwood nice to meet vancouver peeps.
You are newly diagnosed and I was diagnosed in late 2008. We should meet up at a coffee shop and we can chew the fat about MS and their medications. I went thru the ringer and now on the newest of the new hahah.
Best Jorge


vixen
3 weeks ago

Brilliant, love it @underdog – in times of need, the answer is Chumbawumba! 🙂 🙂


adiwood
3 weeks ago

@underdog Yes. I have 3 kids and a couple of dogs on my own. I find just managing them and their school and taking care of everything to be quite a lot and the idea of work too is feeling quite overwhelming. I usually am the leader with work putting on workshops and managing many things but now the simplest tasks seem to be too much. I will admit I’ve been more stressed since the pandemic but it didn’t happen overnight. It’s been slowly getting to this point for at least 6 years – I just didn’t understand why I was having so much trouble doing things that were normally a breeze for me. I’m the mom that worked full time raised 3 kids and did her masters. I’m the mom that lead workshops for the administrators in our school district and worked in the summers putting on institutions for teachers. I’m the one that was turning down offers to work at the university. I really have to just redefine what I find is important to me and work can not be that main goal. In some ways maybe it’s for the better because my kids have often had the raw end of the deal so now I’ll be around for them a bit more. I am hoping to instil healthy living into my life consistently – I did before but it would take the sideline when I got busy. I wish I had a Range Rover! I’ve got an older Mazda5 – total mom car!


adiwood
3 weeks ago

@sara21 You give me hope!! I definitely notice stress makes it worse!! I really hope it gets better because I’ve been crying every morning at the loss of that ability to multi-task and check off those lists. I just know that it’s been declining for quite a while and I have not observed it being back to the way I was for quite some time – like over a year or maybe even two.


adiwood
3 weeks ago

@jamoranto That could possibly work. Where abouts in Vancity are you?


adiwood
3 weeks ago

@itsmewithms I don’t know if the lesions are active or anything. I don’t really understand the lingo yet. I have them in three regions of my brain. The nurse team did say I can call them whenever I would like steroids. I figured that was more for debilitating symptoms. If my face goes completely numb again I may consider it but it’s more annoying than painful. When and if my legs and feet get bad I may try it to see if that helps. Everything just seems to have settled for the last 4-5 months so still there but not as bad – face numbness is subtle, pain in legs and feet is way better than it has been in the past and brain fog but no vertigo. Speech has become horrible (stuttering, slow to find my words) that I notice comes and goes with stress. Will get my meds (whatever they may be) tomorrow.


adiwood
3 weeks ago

@amysimpson Thanks! I will check out luminosity for sure 🙂


adiwood
3 weeks ago

Thank you so much @fuzzy9 I may take you up on that and private message. Sometimes I post to things publicly and then an hour later I regret it and then delete it!!


adiwood
3 weeks ago

@potter Thanks for sharing. It’s so good to hear you are doing so well!! Take Care.


jamoranto
3 weeks ago

@adiwood I live close to crescent beach Whiterock all my crew lives in Van I’m usually the one with a higher mileage vehicle ha.


itsmewithms
3 weeks ago

When a lesion is “active” it will be a bright spot on your MRI and you could benefit from the massive steroids to end the inflammation. Each lesion can cause issues now and again in the future so it is better to prevent them and that is what the DMTs try to do. The steroids shut down the inflammation quickly but don’t necessarily result in less overall damage – we just feel better quicker.

Hopefully you are with a MS specialty Neuro or watch through as much Dr Boster’s You Tube videos as you can and you will understand things better…he puts it out there in easy to understand videos that are pretty short and digestible. Good luck!

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