Last reply 3 months ago
Lost in the Healthcare System

Hi everyone, hope you are all managing today! I have been getting symptoms since december: vertigo with nausea, bladder/bowel incontinence, the hug feeling in my torso, muscle spasms on my right side, cold spots on my face, tingling that has turned into numbness on my feet, left leg and torso, and now tingling in my hands. Not to mention the fatigue and burning/tightness in my legs where I now have a cane.

My MRI showed 5+ lesions in my brain and 4 in my spine. I have yet to get into the MS clinic and I was told I have MS 6 weeks ago. I’m feeling very lost in the healthcare system! My question though is if I did have a relapse then why do my symptoms keep consistently changing and getting worse? Since the first one, some have gotten better but it’s been consistently adding on. My GP is advocating for me now but no luck yet.

I went and saw a naturopath which I have some supplements for now so at least I feel like I’m doing something positive.

It’s been quite frustrating being in limbo. Hopefully I’ll have some answers soon.

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stumbler
4 months ago

Hi @silvergyrl and happy birthday for tomorrow.

Receiving a diagnosis of MS is a hard time for you. You need to accept that you have a health condition and give your body a chance to stabilise and recover. So, try and rest up as much as possible, research this condition (stick with creditable websites) and try not to worry. Even treat and pamper yourself. You deserve and need it.

I can’t comment on your healthcare system. Hopefully our Canadian members can help out here.

You do need to get into the MS Clinic, to understand what options you have for treatment of the MS and management of the symptoms. If you can arrange this sooner, rather than later, then you’ll feel that you are taking an active role in your MS.

Feel free to ask any questions that you may have.


vixen
4 months ago

Hello @silvergyrl, hello to Canada from the UK! The symptoms you have been having from December, was that your first episode as such? Being newly diagnosed, one of the most common preoccupations often seems to be trying to establish an idea of what is ‘the new normal’ and believe me, after 18months, I am still working on that one. Although my initial relapse ended, from then on, my everyday symptoms and jangles changed and shifted and continue to do so. From what I understand, that could be the impact of residual damage caused by one of the lesions.

So, at least you have a diagnosis, you are being monitored and as @stumbler says, they need to whisk you into the MS clinic to receive more practical support and options regarding medications. The search button here on the top left is an excellent way to research first-hand experiences of symptoms, treatments and other things. All the best x


edmontonalberta
4 months ago

@silvergyrl

I keep telling people that although our health care system is supposedly free; we get what we pay for… Which is almost nothing…

What I recommend is self healing. Proper diet – lots of fish, chicken, vegetables, etc… No red meat; no eggs; no milk. My wife makes fruit smoothies for me every day with pineapple, bananas, frozen berries plus who knows what else she puts in it. Vitamin D daily, Omega 3 plus whatever seems right. And of course gentle exercise to keep your muscles functioning properly.

We are planning to visit friends in Winnipeg in late September if you are interested in getting together for dinner & a chat.

Gord


peterfrancis
4 months ago

Hi silvergyrl

From what you said in your post your symptoms read exactly the same as mine.
I was diagnosed with Rapid SPMS late last year, out of curiosity what type of MS is it you were told you have?.

As for the Hospital/Doctors/Nurses getting in touch with you, sadly it can be a waiting game but you can always contact them in the hope that will hurry things along for you.


beefree
4 months ago

Hi @silvergyrl,

Sorry to hear that it’s been difficult. The waiting is the worst, but there can be value in it too.

When I had my first symptoms in August, with 5 lesions on my MRI, I felt conflicted: I wanted to feel in control, that I was doing something positive; I also needed time to process at my own pace, what was for me a big blow. A quicker process would have provided distraction, but the time helped me prepare emotionally to begin treatment, which is a big milestone.

When I relapsed in October, like you, I had a range of new symptoms, none were severe or prolonged. I had an MRI in November, which showed no new lesions. I was baffled. Given my symptoms, I was braced for a diagnosis of rapid progression. My neurologist confirmed that it was a relapse explaining that very small areas of damage, which might not show up on an MRI, can have a significant effect. We can’t know for sure, but think some symptoms were new, some were pseudo-relapses caused by stress and some were directly stress-related.

I was advised that unless something very serious happens progression will be monitored through the annual MRI’s. Steroids are available for relapses but aren’t necessary.

I used the time between my November MRI and February appointment with my neurologist to read up on treatments and to adjust to the situation. I felt that the more I knew, the better placed I’d be to have a say and some control, which I think was probably the case.

Keep positive. Keep doing what you’re doing.

Good luck with it!


silvergyrl
4 months ago

Thanks for the kind words everyone. I am focusing on self-care in the meantime! I have started meditating, went and got my nails done (although I couldn’t feel the massage on my feet – they look pretty lol).

For those that asked, this is my first episode, so I haven’t been diagnosed with a kind yet but it’s very prolonged, 4+ months now. We do get what we pay for here in Manitoba that’s for sure.

I did get my GP to advocate for me and I now have an appt back with the neurologist tomorrow! Hopefully this will get the ball rolling or at least get my second MRI scheduled.

As my naturopath put it, we need to try and influence the disease not control it so I feel like I am doing my very best and that’s all I can hope for. XO.


melissa-g
4 months ago

@silergyrl I’m sorry to hear you’re dealing with that! I’m from Toronto, and waiting 3 months for a first appointment at the MS clinic hear is unfortunately the norm. I’ve had a bit of a hard time feeling listened to since my diagnosis, but the key is to continue advocating for yourself and being pushy when you need to be!

Hope you get some answers soon, and can start deciding on a plan of action 🙂


silvergyrl
3 months ago

@melissa-g It’s good to know what the norm here is in Canada. I saw my neuro today and he tremendously apologized for me calling 3 weeks ago with no answer. He didn’t get the message and it wasn’t even written in my chart!

I was put on intravenous steroids for 3 days so here’s hoping it is some relief. Hoping to get into the MS clinic sooner than later but I need my new MRI first. They better order it soon!


sigmadelta
3 months ago

Wow girl! Sounds a lot like my first major attack 3 yrs back.
Everything was changing day by day, symptoms were almost fluid.
And the speed was frightening.
Steroids did nothing.
The thing is silvergyrl, as you will realise. the healthcare system does not know what to do about us.
Its only answer is to try and slap a band-aid on the symptoms. Cause unknown.
“Multiple sclerosis” is simply a description of said symptoms, caused by umm… they just have no idea.
Its a bit like telling someone with measles they have “multiple spot-itis”. lol
You will get more support and info on here than any amount of time spent in hospital waiting rooms, followed by listening to so called ‘consultants’, who will try to avoid answering the question of “What’s causing this ?”.

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