Last reply 4 months ago
How it all started. Who have I become?

I’ve always felt off balance ot had little to no balance. As a young child/teen I suffered from clustered mirgarines which had symptoms of blurred vision, numbness, impaired speech, even paralzation on the left side. The “episiodes” got better once I got glasses but I was always afraid of getting headaches as it could easily turn to a nightmare.

Years later, actually late 2015, I was in a car accident which my car was totaled and I was rushed by ambulance. No major injuries however, they found 2 hernias on L3-L4 and L4-L5 of my spine (lower back) (this was the first time I started having lower back pain). They said they couldn’t determine whether it was caused from the accident or not. I started doing physio therapy and they prescribed naproxen for the pain.

A couple of months went by and the lower back pain was getting worse. I was developing new symptoms of numbness /tingles in my arms and hands that would keep me up at night and appear randomly during the day at work. I work at a call centre, sitting down at my desk on the computer at that point for 8 hours +. My best description was that my arms were weak as if I went to the gym was lifted weights the day before but didn’t. I went to emergency one morning because my left hand/arm was numb/ tingling all night and starting to loose feeling and decided this was alarming. EMG test was clear as I thought it was maybe carpel tunnel as that runs in my family. More meds were prescribed, time off work but this time they gave me a referral for a MRI.

The beginning of 2017, my symptoms were worse. The numbness spread down to my thighs and legs. My arms were always weak and sore. I stopped doing normal things like dishes, brushing my hair, doing my makeup, coulouring. Normal everyday activities were difficult. Not only that but my back was always hurting. I was never comfortable, always moving. I couldn’t sit up right for too long and by then working at the office was really difficult for me. I got a promotion however it put me on a schedule of 10+ hours a day. Physio therapy was too expensive so I stopped going but tried to do what I was taught from home. Obvousily I lost motivation. But my first MRI scan results were finally in! 2 lessons that were ‘unclear’ they told me. So now they gave me a referral for a neurologist. Serveral months later LP was done and with my luck leaked, I was rushed to a near by hospital for a blood patch and they punctured where my hernias are!! – more time off work, more meds. Or like my mom says a cocktail of pills!

2018, my neurologist confirms the results for the LP, there in lots of inflammation and wants another MRI done. Explains the possibility of MS and what it is but is highly unlikely as my number one symptom is chronic pain and that ‘usually’ not the case. That year was tough, not just because the news my very close and only grandfather passed away after that and I’ve never had anyone close to me pass. Work was very stressful and becoming more difficult to manage with the constant pain. I tried to do physio again and she recommended I get more active and start the gym. Later that week, I joined the gym and once again with my luck I injured my back on the second day were I couldn’t move. I litterally thought I broke my back! Guess who needs to go to emergency again!? Guess who gets pumped up with new pain meds and no real relief!? I do have a family doctor, she was able to get an mri for my back, xrays for it as well, stronger meds as well and referrals to see a chiropractor and rheumatologist.

End of 2018/ beginning of 2019. MRI for back shows hernias are still there but too small for surgery, I’ve been waiting to hear from a new doctor to consult on cortazone shots? Which I really don’t like the sound of the idea of that! Last when I saw my family doctor, xrays weren’t found in the system… and more time off work was given since the injury from gym in September.

Since then, new symptoms have appeared, on top of my others. My brain is foggy and I have a hard time focusing. I have tingles in my feet throughout the day. I have a hard time controlling my bladder sometimes. I’m tired and my body is sore almost always. I know, you could be thinking well girl, your being pumped up with all these meds of course your body is feeling and reacting this way, I asked and sure some of these are side of effects but not as intense as these.

The new MRI for my brain showed a 3rd lesson and it’s very big and inflamed. My neurologist sat me down and confirmed that this in fact was MS with the LP results and these symptoms I have been descripting to her, this is just the beginning! She advises it’s RRMS and I should speak to a nurse to talk about a treatment plan ASAP. So in fact most of what I’m feeling is MS symptoms, whether I want to believe it or not.

I consulted the MS nurse with my very supportive boyfriend January 25. Thankfully he was there because most of the information when through one ear and out the other. Not that I don’t care, it’s just a shock. I mean, my neurologist sort of warned me for it but then also said it wasn’t likely, so did my family doctor as well. I had a panic attack in the middle of the discussion and had to stop for a couple of minutes to breathe and get water. Was this really happening? Excuse me, IS THIS REALLY happening?

It’s the end of February now. Unemployment can no longer cover me as here In Canada it’s only a max of 15 weeks. My doctors note ends mid March to return to work however, I really don’t feel/think I can return but how else will I survive? I’ve looked into disability but I don’t think my doctors believe it’s a serve enough case to prevent be for permantly no work. It’s my 25th birthday on March 7th, never did I ever think that this is where I would be making these extremely tough LIFE desicions and suffering from all this pain. You hear most 25 year old organizing a big party, getting all dolled up, drinking and not worrying about money or any care in the world. What have I become?

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5 months ago

I know this is long and maybe even useless to some. I just felt the need to tell my story. I’m in abit of a dark place these past few days and found this website so thought I’d give it a try ♥️

5 months ago

Hi @jessgibs25 and welcome.

I’m sorry that you are having to go through all this, but I hope it’s been therapeutic to write it all down. It can be quite cathartic.

The thing with MS is that we have to acknowledge that it exists and then find the best way to live with it. There’s a range of treatments now available to delay, and even halt, progression.

Worrying and allowing yourself become depressed is playing into the hands of the MS. So, you do need to consider tactics to address this, e.g. mindfulness.

You also need your medical team to differentiate between the pain caused by the hernias and the symptoms caused by the MS, as the treatments for these two conditions should be different.

There is life after a diagnosis of MS. You just need to see these possibilities to get your mindset into a better place.

5 months ago

@stumbler thank you so much for reaching out! I defiantly appreciate it! It does feel good to express myself through writing, I just felt the need to write it all out!

Holding on to all these feelings have only been making it harder and agree with you with needed to get my medical team to differentiate the pain and also to get my mindset in a better place. All in good time. I guess. It’s been a long process already however reading on here there are far more longer journeys so I just have to be paitent with my body and find a way to turn things around. I’m not giving up yet 🙂

5 months ago

@jessgibs25 , that’s the spirit. we’re all warriors. 😉

4 months ago

Hi @jessgibs25 , my cousin was diagnosed with MS last year mid year. She had been complaining that she was feeling a a”pins and needles” sensation on her legs during the early months of the year but none of the doctors were ever able t determine what the cause was.

Mid year last year she collapsed at work and was sent to the ER. After multiple tests and a long duration stay at the hospital she was diagnosed. Since was given Aubagio but experienced serious side effects (mood swings, loss of appetite, tummy aches, seizures, hair loss etc).

Her diagnosis has affected me so much in that I want to learn more about the condition, I realised through her diagnosis that emotional support was pivotal in our (I say our because it is our MS not hers only) journey.

Please believe that MS does not define who you are. You will know what triggers episodes/relapses, you will learn through time how to “manage” the effects etc.

We are glad that you have found a platform to vent and find comfort/support.

I wish you all the best in your journey

With love
from South Africa

I hope that

4 months ago

@anonymous hey there thank you so much for your response and support on here already! I’m very sorry to hear about your cousin and hope that she is doing abit better herself. It’s so nice to hear that you reached out and that there are people out there such as yourself who care 😇

I was recommending aubagio but haven’t heard much about it so it was also very good to hear some feedback. Thank you so much.

Yes, it will come with time and great peoples support to find a way to ‘manage’ these effects. Much respect and love goes out to you guys ♥️

4 months ago

Hi @jessgibbs25 long story but the long and short of it is you’ve joined our exclusive club! You’ve had all the necessary advice from our ms warriors and you seem to be in the right mindset but can I pick up on one thing. You mentioned a bad car crash a few years ago. As you may or may not know, we are born with ms. It takes a major trauma to your body to ‘set it off’ hence the 60/40 split with women/men cos men don’t menstruate or get pregnant. Big court case in England a few years ago, Lady was injured in a rear end shunt, the ms symptoms started to appear a few weeks later, long story short, but she took the perpetrators insurance company to court and won, apparently quite easily because it is well accepted by the medical experts that a major trauma can set things off and they were quite prepared to say so in court. Worth looking into? No idea what the judiciary system is like in Canada but it’s got to be worth consulting a lawyer.🥊😜

4 months ago

Hello just o let you know I too was 25 when I was diagnosed in 1990. I had my son in 1993 he is 26 now. Leg got a little heavier after his birth but life carried on. MS never got in the way of how my life progressed for many years. The more positive you are the better for you. I was diagnosed ppms no treatment available. Luckily you have options and choices now that medicine has progressed. Now with the internet, we can all share what knowledge we have. Great. My advise to you is to get in touch with the MS society and ask to be put on the mailing list for a magazine they produce called pathways. It is very informative not at all depressing. You are fortunate to have support from your partner. I wish you a speedy recovery from your relapse and know you are not alone. You may need time to grieve for the loss of your predicted future but remember MS is different for everybody don’t write yourself of it may never happen. x

4 months ago

Hello @jessgibs25, sorry you’ve had a totally pants experience (an English expression which might not make sense to a Canadian!) I guarantee that every one on here will have passed over to the dark side of thoughts during and after diagnosis. The up side is that this is pretty much temporary and you will find a way through it.

So, regarding work, just because you’re due back, it doesn’t mean you have to go at it full speed. Your work place will need to make adjustments to your job to help you transition back in. More important than that though, is your impending birthday. Being quarter of a century is something to celebrate. You must still get dolled up, have a drink; why don’t you ask your loved ones to do the planning for you?

Everything is really new for you at the moment. You need lots of time to adjust, and to process things. Don’t rush into making any decisions, but do focus on eating healthily and resting lots. You need to recover mentally, emotionally and physically. MS won’t stop you being a beautiful young woman, with a life ahead and a wonderful boyfriend. Accept all the help available at the moment whilst you are in this strange place where your world has turned upside down. There is lots of support here for you xx

4 months ago

@grandmatahbk you got the welcoming! Everyone has been so kind and helpful on here! This is something to defiantly look into futher about the accident! Thanks so much for the great help and advice 🥰

4 months ago

@dramaqueen Wow, I’m truly inspired from your story and can’t thank you enough for sharing! It opened my eyes and has me believing that there is light at the end of the dark tunnel and you’re a great example of a women you continued to live a ‘normal’ life after being diagnosed. So thank you for giving me hope, it’s deeply appreciated ♥️ All the best to you and your family x

4 months ago

@vixen you’re reassuring and positive words are very soothing! And you’re totally right, this ‘dark side’ of thoughts were temporary and after a lot of rest, reading, getting myself informed, and sharing my thought and emotions to other, it’s defiantly lifted a great deal of sadness. There’s still a long way to go but everyone on here has given me Some hope to keep going and make the best of my life. Thank you for all your great ideas and suggestions, I truly appreciate it and you !! wishing you all the best ♥️🥰♥️🥰

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