Tell me about Multiple Sclerosis

[Maritime Q-Scout]

Admittedly I don't know much about the disease. However, I just got off the phone with my younger brother who told me they are sending him for an MRI as there is a "strong chance" he has Multiple Sclerosis.

Obviously I was nothing but positive "you don't know that, let's let them rule it out" and "it's 2022, it's not a big deal" and "Kennedy has it when hew as President during the Cuban Missile Crisis, it's not a big deal" and "life expectancy is slightly lower but that looks to be due to a higher rate of suicide, so you'll be fine".

All that said... I'm shook.

Don't sugar coat it, gimme the good, the bad and the ugly. WebMD, Mayo Clinic, random sites aren't doing it for me right now.

[ah123]

Don’t know much about it, but we have an acquaintance who has MS. It seems to flair up during the winter, so for the last few years, she goes back to Africa to spend time with her mum during the winter. Last I talked her, her and her boyfriend were thinking of moving to South America to avoid her winter flair ups. She mentioned that Calgary has a high incidence of MS

Good luck to your brother. Hope things go well for him

[TorqueDog]

I'd recommend having as few scleroses as possible, and having multiple is just being greedy.

My cousin was diagnosed with MS back in 2007 and she's 42 or 43 now. Hers seems to be pretty well controlled with medication, and -- as ah123 mentioned -- winter tends to set it off from time to time.

Like anything, symptoms can be really mild depending on the person. I wish I had more to tell you about it, but that's what I know from my vantage point on the matter. My cousin is doing pretty well where her MS is concerned, and considering how she doesn't take care of herself in literally any other way whatsoever, that's pretty impressive / fortunate.

[bc-chris]

oh MQS - so sorry. i hope the docs are wrong.

i don't know much about it other than my wife's dad had ms. he died when she was a teenager so i never met him. from the stories she's told me she got to watch her dad go from being a normal man to one that eventually couldn't do anything for himself as the disease slowly took over his body.

[MoneyGuy]

The early diagnosis may be wrong. My GP told me I probably have early-onset Alzheimer’s. He sent me to a specialist who told me I don’t.

As for experience, I have two cousins with MS. One is severe and she’s been wheelchair-bound for many years and for a male cousin who got it later it’s far less severe. For some reason it seems to affect women more and the incidence rate is much higher in Alberta than elsewhere.

[photon]

I have a good friend with it, when I first met him in the early 90's in his 30's he had just started having to use a wheelchair (though a manual one). He could still use a computer mouse and keyboard etc.

Since then he's slowly gotten worse over time. Now he is in an electric wheelchair and he can't control it himself (or I suppose he could with a mouth controller). He can talk ok, but can't really move anything else by himself. He's in an assisted care facility.

It's crazy how slow the change was for him, losing the ability to do things for himself over the span of years.

He said there's different kinds, I remember my mom having a friend with it when I was a teenager but she seemed to progress much much faster and she passed away a lot younger. But I don't know much more about it.

Whenever I ask him how he's doing he always laughs and says "still alive", he's amazingly positive all things considered.

[Amethyst]

Yes, there are different kinds. I don't know all the details (or remember the names) but I had a friend who had it. When I first knew her, she had relapsing-remitting, which basically meant sometimes she was almost totally fine and sometimes she had occasional flare-ups. At that point, you wouldn't have known there was anything wrong, except she had a cane to occasionally help with balance (but didn't restrict her ability to do anything). Later, it was progressive and she got significantly worse, requiring a wheelchair and home care to come in a couple times a day to help with basic day to day stuff, like showering, etc.

I don't know if it switched from one kind to the other, or was always progressive but only became more noticeable over time.

She went overseas a couple times for treatments (there was a doctor that claimed he had a cure but it never got approved in Canada), but they didn't do anything for her.

And, only if you really do want the ugly, keep reading below.

Spoiler!

She had a couple injuries that, combined with her MS, meant she was in constant pain and could no longer care for herself and did choose to end her life at that point. I was no longer close with her then, so I don't know all the details.

[darockwilder]

Some good information here. The link on the side about "Types" is important because there are 4 main kinds. The symptoms and trajectory of it varies incredibly widely from person to person.

https://mssociety.ca/about-ms

[KTrain]

I have a few acquaintances who were diagnosed in their 20s and both seem to be doing as well as they can be after 20+ years.

I know it's early, and he's still waiting for results, but one thing that helped them significantly was improving their diet and increasing their physical activity. Depression or hopelessness could get the better of them, but in-activity could make things progress more quickly.

https://mshope.com is run by Calgarian, Matt Embry and is a good resource for early diagnoses. Something that can go hand-in-hand with what their doctors suggest.

[Shazam]

I know Matt. Talk to him.

[peter12]

Originally Posted by MoneyGuy

The early diagnosis may be wrong. My GP told me I probably have early-onset Alzheimer’s. He sent me to a specialist who told me I don’t.

As for experience, I have two cousins with MS. One is severe and she’s been wheelchair-bound for many years and for a male cousin who got it later it’s far less severe. For some reason it seems to affect women more and the incidence rate is much higher in Alberta than elsewhere.

####, MG, I'm glad to hear this. My partner's step-dad has been slowly spiraling through early-onset Alzheimer's and it is just the worst disease.

[Barnet Flame]

I have MS. I was diagnosed with it circa 2006, but the signs looking back on it went back a few years prior to that.

When I was diagnosed, I had no idea about the disease other than the knowledge that it is something terrible. My immediate thought was, ‘am I going to die?’ My son wasn’t even 1 year old.

The following week, I was due to go on my annual ski trip to Calgary. I had to scramble to get my insurance to cover me. I remember my last day of the trip, bursting into tears as we headed back to Calgary from the mountains. I thought that was it, I am unlikely to ski again.

When I returned to the UK, my condition got progressively worse. I started having difficulty walking - I couldn’t run and that happened during a weekend visiting family in Ireland, alone with my son. I didn’t realise it then, but I was having a second relapse in quick succession.

I stayed like this for a few weeks, when suddenly I had to run for a bus. Without thinking, I took off and as I ran for the bus, I realised what was happening - I WAS RUNNING! I couldn’t believe it.

I had a wonderful neurologist back then - I’m still with her today. She moved to a central London hospital and I asked to move with her and it happened. I see her team every six months and they have arranged so much support for me to help me deal with this disease. The medication doesn’t cure the disease, but it helps me manage it - it took a few attempts to find what I think is right for me.

Early on, the relapses were way more frequent than now when you have a relapse, your condition worsens and then inexplicably goes away, but you often don’t turn back completely your former self - some symptoms remain.

I haven’t had a relapse that I’m aware of for a good few years now, but stress and hot environments where I can’t control the temperature act as triggers to my symptoms and I try to manage these as far as possible - otherwise the fatigue is something else.

There are three main types of MS. If you have to have MS, the one you want is ‘relapsing and remitting. That is the type I have now and the drugs I take help me avoid future relapses and going on to have ‘secondary progressive’. The other type is ‘primary progressive’ where you never go through the relapsing and remitting phase.

Primary and Secondary progressive are horrible conditions to have because your condition never gets better, your condition always worsens. If I prayed, I’d pray never to get secondary progressive.

Today, over 15 years after being diagnosed, I’m happy to say, I still am in full time employment, my wife has told me she often forgets I have MS and other than during Covid lockdown years, I’ve never missed a ski trip and now my son joins me for what is my favourite two weeks of the year.

I just need to know my limits so that I don’t get fatigued, because once that sets in, I’m toast.

I hope the news is as good as it possibly can be for your brother as it possibly can be. I know I’m lucky in that things could be far worse. The disease and how it impacts people is wildly unpredictable, ranging from mild to cruelly severe. And you never know when things will change.

I took a lot of strength from reading Michael J Fox’s autobiography and how he deals with Parkinson’s. Live the moment you’re in and don’t fear what could happen. If you fear what will happen, you will experience it twice - when you fear it and again when and if it happens.

If you want to know more at any time, PM me.

[fundmark19]

Feel free to reach out my wife was just diagnosed in the spring so we are going down this new found path. Looking back a lot of things have started to click with the diagnosis. Here are main things we are dealing with:

Hand numbness and loss of control. Numbness in other areas of the body as well
She is now blind in 1 eye
Heat! The hot weather has really been kicking her butt and making her feel terrible not sure if this trigures on your end as well.
There seems to be different levels of drug allowance by insurers and the drug the Dr thinks will work best for her she can't be approved for until she has tried the other 2 so we are still working through getting her onto the right medication which seems to be the turning point for most people.

[TorqueDog]

Originally Posted by fundmark19

There seems to be different levels of drug allowance by insurers and the drug the Dr thinks will work best for her she can't be approved for until she has tried the other 2 so we are still working through getting her onto the right medication which seems to be the turning point for most people.

I'm sorry you and your wife are going through this colossal pain in the ass. I went through this after my UC diagnosis too.

Doctor: "Choose between these two things, they're safe, they have a really high rate of success, the only difference is administration interval and circumstances of administration (ie: stick yourself with a needle bi-weekly, or come in for 2 hour drug infusions every eight weeks)."
Me: "Gimme the infusions, way easier to plan life around it."
Sun Life: "Weeeeeeeeell, before we can put you on [this stuff that works really well with pretty much zero noticeable side effects], you need to try [this other stuff that has a higher incidence of side effects like, y'know, CANCER, in men who take the drug, but hey it's cheaper]."

My employer and I both pay for drug coverage through you, you can kiss my ass if you think I should be forced to use the crappy stuff first against my doctor's recommendation.

[Maritime Q-Scout]

Thanks folks.

Reading these stories makes me feel a lot better (even the tragic sides).

The biggest thing for me is not knowing. I can deal with worst case scenario, I can't deal with the possibility of worse case scenario.

Drug plan is something I never thought of. Might be a good idea for him to bump up the wedding (which got postponed due to covid) to get on his fiancée drug plan.... how romantic!

Might also talk with my wife about taking a venture up to where he lives to be with him for the MRI. Biggest issues there are: 1.5 month old at home, plus the 5 year old, and general lack of sleep/burn out from work then driving 8ish hours up and 8ish hours back.

[TorqueDog]

Originally Posted by Maritime Q-Scout

Drug plan is something I never thought of. Might be a good idea for him to bump up the wedding (which got postponed due to covid) to get on his fiancée drug plan.... how romantic!

She might be able to add him to her coverage as a common-law spouse already, just have to check with the insurer she's under.

[Nage Waza]

Unfortunately, Ms took my father in law’s body away slowly until it killed him. Last 20 years of his life spent either in a wheelchair or a bed. He was crippled from it. There are different types and new drugs, so hopefully all goes well.

Sorry to hear your news, make sure if positive to support him and ensure he follows the treatment program. Also, support his wife and kids, it can be very hard on their partners and can even be harder on the partners.

[fundmark19]

Originally Posted by Nage Waza

Unfortunately, Ms took my father in law’s body away slowly until it killed him. Last 20 years of his life spent either in a wheelchair or a bed. He was crippled from it. There are different types and new drugs, so hopefully all goes well.

Sorry to hear your news, make sure if positive to support him and ensure he follows the treatment program. Also, support his wife and kids, it can be very hard on their partners and can even be harder on the partners.

Sorry to hear this! I am optomistic this isn't the route that will happen in my situation but the Dr has already mentioned it is a very strong possibility that total vision loss and wheelchair could be in our future.

Game plan is to try and stay as positive as possible and let the Dr's worry about everything down the line. Live in the now and thank goodness for free health care or I would be bankrupt by now.

[redforever]

My friend lost her husband to MS about 5 years ago, He was diagnosed later, about 43, and it progressed quickly...in a wheelchair in 5 years...sight problems as well. He allowed himself to be used as a guinea pig for new medications. They ultimately caused cancer and that is what he died from.

His eldest son was diagnosed with MS about 6 months before he died. The son is mid 40's now with basically no symptoms. He is on some medication, don't know what, and he follows a pescatarian diet...except he excludes dairy as well. He is able to follow all of his normal routines at this point in time.

[Cole436]

MS isn't a death sentence and you shouldn't look at it like that.

My mom was diagnosed when she was in her late 30's and she completely changed her lifestyle to be almost a fully plant based diet and intense/consistent exercise. She's now in her early 60's and because her body is starting to slow down, so has her MS. At this point her neurologist has told her it will likely never get worse than it is now.

I think a lot of it comes down to how young you are when you're diagnosed. The younger you are, the higher risk you're going to have more problems.

MS clinics are wonderful, drug treatments are getting better, and eventually we will beat this disease.

If you need to chat you're more than welcome to message me.