Treat MS like they treat cancer

[Thinkimjob]

Sore legs; ankles and feet a wee tad elephantine. So I call Dr Google, as you do, 'cos it's a Saturday.

After wading through pages of "what does your symptom mean?" - you are possibly dying of heart failure etc, I find a British MS Society site. It's reputable.

I read on.

Analgesics don't work on neurological pain, the stuff that works eg OxyContin is addictive (duh), as are all varieties of benzodiazepam.

If I but had a positive attitude, apparently, all my troubles would disappear.

I do my best. Truly, no-one ever tells you early on how hard MS can get.

If we had cancer, the doctors would be pulling out the biggest gun they had. No pussy-footing around with the other stuff. No choice for doctor or patient, just hit it hard.

Any hoo, I've ended where I should have begun. Time to start treating MS like they treat cancer.

There are better drugs for MS now. Yes, some of them are kind of scary, and no, there's no cure. (There's no cure for cancer, either.)

If I had breast cancer, I'd be told exactly what had to be done. My choice would be "yes" or "no". With MS, there are plenty of choices, none of them easy.

[Dale76]

Young cancer patients get attention, when a senior gets cancer they get the run around and normally they die of a overdose of morphine, not cancer.... Watched 3 grandparents go through this. Trust me cancer patients don't have it too good either....

I do agree with you that MS is not taken seriously enough and most doctors seem oblivious to the suffering we experiance.

[Jules A]

when a senior gets cancer they get the run around and normally they die of a overdose of morphine, not cancer.

I personally can only wish this would be my fate at the hands of a compassionate, skilled hospice nurse, rather than suffering through horrific cancer treatments or a long, nasty course of MS.

[frosty123]

Clarification

I have been involved in hospice for a very long time and please believe me that giving a patient an overdose of morphine is never acceptable.

What morphine, Ativan and atropine actually do is allow patient to breath more easily, relax and be free from pain for whatever time they have left.

When it is my turn to go "graciously into the dark night" I pray that I am properly medicated, dying is hard work. Physically, emotionally and spiritually very hard work.

It should not be painful.

Peace

[Dale76]

I have been involved in hospice for a very long time and please believe me that giving a patient an overdose of morphine is never acceptable.

I never said it was "acceptable" I said it happens and I know that for a fact. You really think they are going to investigate the death of a terminally ill patient? Very unlikely.

[palmtree]

I've thought that, too, about the nice hospice, but I had a hospice nurse take care of me this summer and she told me I need a better attitude.

About treating MS like cancer, I agree. I wish they had an early detection like cancer. Then, they put us on an aggressive treatment like Lemtrada.

Then, everyone can go oooo and ahhh and help us fight it.

With MS, they tell us we are hypochondriacs until the MRI is finally definitive. Then, try drugs that decrease MS progression 30%, and wait until the damage is done before switching us to something stronger.

Then, if we tell our doctors what we are really suffering, they don't want to hear about it.

However, when I think back 20 years. I wasn't feeling well. I was tired and the heat was bothering me. If I'd known I had MS then, it would have devastated 20 years.

[Tawanda]

With MS, they tell us we are hypochondriacs until the MRI is finally definitive.

...and even after that because "we look so good"...! Arghhh!

[Tawanda]

I never said it was "acceptable" I said it happens and I know that for a fact. You really think they are going to investigate the death of a terminally ill patient? Very unlikely.

Nor an elderly patient...

[Mable]

What are you saying, Job?

For a while, you said you were lined up to take Lemtrada. Then, you said it was too dangerous. Is this your way of saying you're going to take the plunge?

[Thinkimjob]

I'm just scared, Mable. A "gutless wonder" they call it down under. (Ooh, that rhymes..)

I'm trying to persuade myself there is a point at this late stage of the game to this heavy stuff.

I've left the whole pony ride way too long, and I think the horse has long since bolted. (Like about five years ago.)

Not that there was a pony to ride, back then. I can't see this getting any better, only maybe less worse.

[Jules A]

For a while, you said you were lined up to take Lemtrada. Then, you said it was too dangerous. Is this your way of saying you're going to take the plunge?

I was wondering also and do think that when our MS gets to a point where we can see the horrible writing on the wall it is time to become aggressive and pull out all the stops similar to how they treat cancer.

Existing in a near vegetative state is my worst nightmare and I will try anything to avoid that fate.

[Thinkimjob]

No Jules A, probably much, much sooner. It's all too late, for me, because I can't see anything improving.

That's the trouble with MS, you can drift along and persevere, and it's really not that bad, although you wouldn't tolerate it for a day if you didn't know you had this potentially, probably nightmarish disease.

All you want to do is to live a relatively normal life for as long as possible. I'm doing okay, just let it continue.

I was going to mention the Woody Allen "joke" about how he'd often thought of suicide, except he'd have to kill his parents first, because it would break their hearts, so he couldn't do it, ever.

And that's MS. You are always trapped between a rock and a hard place. Prometheus chained to a rock and the eagle which came and tore at his liver.

It is possible to keep a stiff upper lip, but then it is time again, and you hear those big wings flapping, and see those giant talons.

Sorry, that was a tad morbid.

[palmtree]

If someone with MS told me they never had these thoughts I would think either they are lying or are completely ignorant about what MS can do. When I was growing up I watched the agonizing decline of my aunt until her death 20 years later. It was a horror matched only by Annette Funicello.

[Jules A]

If someone with MS told me they never had these thoughts I would think either they are lying or are completely ignorant about what MS can do.

Well said, Palmtree. I agree.

[poppydarling]

That's the trouble with MS, you can drift along and persevere, and it's really not that bad, although you wouldn't tolerate it for a day if you didn't know you had this potentially, probably nightmarish disease.

All you want to do is to live a relatively normal life for as long as possible. I'm doing okay, just let it continue."


Yessssss.

And my conclusion is there is a lot of (potentially damaging) hurry up and wait in this MS business, a lot of ridiculously expensive drugs that help just a third of the people struggling with compliance on them, a near-complete lack of knowledge after 30+ years of science and observation of what this disease can do.

And docs always act surprised that a progressive disease moves into a progressive phase like they weren't prepared for that, acting like they been blindsided and left without any options to offer — or more likely, they haven't yet figured out a way to milk millions out of us at this point as well.