The Medical Profession and Me

Wryfox · Oct 12, 2021

cvalue13
Without for a moment attempting to diminish any individual’s experience, if I might try and offer a “silver lining” that may momentarily uplift:

In just the past 50-100 years, medicine has all but cured the things that used to take us so much earlier in life. In 1920, the life expectancy of a person in the U.S. was 53, and it’s now 79+

As horrible a disease as is - for example - cancer (and I have my own stories), in some respects many of us now get to experience cancer only because we’ve lived long enough to develop it. So, too, with so many other diseases.

While we should all of course expect and work to make things ever better, always, it perhaps takes off a certain edge of our present frustrations to also be thankful for how far we’ve come.

Perhaps this is too tao to print, but it helps me, and might someone else also

Yeah, this is really important. I'm grateful for everything in my life. Getting news like this in my 50s is far easier to handle than if it was my 20s or 30s. Maturity, emotional stability, a life lived fully.

Look, I have no regrets. I seized life and took opportunities. I've experienced far more than I ever expected. Far far more. What a joy!

So I am extremely grateful I had those opportunities and appreciate what life has offered.

If the sunset of my life begins now, how could I complain?

I will fight of course, but should that fail it will not be from lack of trying. That's the most anyone should expect of themselves.

Life always turns out the way it should, just not always the way you expect.

JwRosenthal · Oct 12, 2021

Wryfox
Yeah, this is really important. I'm grateful for everything in my life. Getting news like this in my 50s is far easier to handle than if it was my 20s or 30s. Maturity, emotional stability, a life lived fully.

Look, I have no regrets. I seized life and took opportunities. I've experienced far more than I ever expected. Far far more. What a joy!

So I am extremely grateful I had those opportunities and appreciate what life has offered.

If the sunset of my life begins now, how could I complain?

I will fight of course, but should that fail it will not be from lack of trying. That's the most anyone should expect of themselves.

Life always turns out the way it should, just not always the way you expect.

One of the things the spinal surgeon said to me on our first appointment (after we realized that the upper half of my body had literally disconnected from the lower and was being supported by muscles, ligaments and tendons), was that he was shocked that I was still walking, and going to work every day. He attributed that directly to the years of running and yoga. He said that had I not been in the shape I was, I probably would have felt the effects years earlier, and would have been totally disabled.
40lbs heavier now than I was before the surgery, I am hoping to get back to that point of wellness again- but it is amazing how the body can compensate and recover when we treat it well and keep incredibly active.
The phrase “if you don’t use it, you lose it” is literal- stay as active as you have always been- keep your body and mind sharp- it will figure out how to keep going and modify as that is what the body is designed to do.

ghce · Oct 12, 2021

Sorry to hear your bad news but on the other hand overjoyed that you have shared your journey which will I hope inspire other people to take a hold of their own destiny and be the advocates they need to be.

I also had some debilitating problems back when I was in my early 30's which I could not get diagnosis on and it was only like your self pushing and researching did I get my doctor to get on the right track.

Later in my late 50's other problems arose and like the previous time I could not get traction with the medical profession so took it all on by myself to find the cause of the problems which then got confirmed by my specialist.

In both cases most people would take it on the chin and just accept what lazy doctors feed them, things like its all in your head ( offer inappropriate meds) and host of other easy to grab at diagnosis.

I have got to the stage of my journey now where my doctor actually believes what I say and lets me work out what medications I need.

All this is only possible because I have keep up with all current research for the conditions I have, reading all the medical journals and trails.

What it has high lighted to me over the years is that most doctors or GP's do not have a great depth of knowledge and unfortunately this also seems to apply to many specialists also.

I am not advocating doctor Google by any means but look at current peer reviewed research that and a good doctor or support group to keep you on track.

Wryfox · Oct 12, 2021

JwRosenthal
One of the things the spinal surgeon said to me on our first appointment (after we realized that the upper half of my body had literally disconnected from the lower and was being supported by muscles, ligaments and tendons), was that he was shocked that I was still walking, and going to work every day. He attributed that directly to the years of running and yoga. He said that had I not been in the shape I was, I probably would have felt the effects years earlier, and would have been totally disabled.
40lbs heavier now than I was before the surgery, I am hoping to get back to that point of wellness again- but it is amazing how the body can compensate and recover when we treat it well and keep incredibly active.
The phrase “if you don’t use it, you lose it” is literal- stay as active as you have always been- keep your body and mind sharp- it will figure out how to keep going and modify as that is what the body is designed to do.

Given the amount of shift you experienced (7mm), you should have been paralyzed. There is precious little room in that area, the most complex of the body.

20yrs ago I had "the best in the region" orthopedic surgeon tell me I needed a three level fusion to correct my "runners back". I was a 145lb wirey runner. Told him to pound sand. I learned from my physical therapist how to strengthen my core more to shore up the bad discs, so I set to it. Fast forward 8years and I was 205lbs, leg pressing 700lbs, and benching 325. Never in my life could I have dreamed accomplishing something like that.

Then I tore a rotator and had to give up heavy weights. While convalescing from that, on a lark a friend asked if I wanted to ride a trail on a mountain bike. Knowing nothing about it, I said sure... And I was hooked. After a couple years got to level where I was competing. Even recently I generally do about 40miles a week, though I have to admit I've had to scale back now due to the developing MS diagnosis.

Hopefully with proper treatment, I can get back to a reasonably normal level of activity. That's the goal anyway, and I like to meet goals.

JwRosenthal · Oct 12, 2021

Wryfox
Given the amount of shift you experienced (7mm), you should have been paralyzed. There is precious little room in that area, the most complex of the body.

20yrs ago I had "the best in the region" orthopedic surgeon tell me I needed a three level fusion to correct my "runners back". I was a 145lb wirey runner. Told him to pound sand. I learned from my physical therapist how to strengthen my core more to shore up the bad discs, so I set to it. Fast forward 8years and I was 205lbs, leg pressing 700lbs, and benching 325. Never in my life could I have dreamed accomplishing something like that.

Then I tore a rotator and had to give up heavy weights. While convalescing from that, on a lark a friend asked if I wanted to ride a trail on a mountain bike. Knowing nothing about it, I said sure... And I was hooked. After a couple years got to level where I was competing. Even recently I generally do about 40miles a week, though I have to admit I've had to scale back now due to the developing MS diagnosis.

Hopefully with proper treatment, I can get back to a reasonably normal level of activity. That's the goal anyway, and I like to meet goals.

Absolutely! Resignation to the ailment (whatever anyone’s particular ailment is) is the beginning of the end. I marvel at the blind faith people put in medical professionals (me being the offspring of two MD’s)- they are only as knowledgeable as the data they have before them and EVERY person is different biologically. Any competent medical professional will admit to only being as good as their data and if you aren’t providing enough for them to make educated decisions, or it is out of their field of expertise, then the process towards healing or management is flawed.
Yes, we all have similar systems, but so many other factors play into how those systems operate. It is incumbent upon each of us to know what has historically worked for our bodies, and what has not. I never thought I had a high threshold for pain, but apparently I do. I have far less tolerance for the side effects of medication than the effects of pain- so I choose to not use medication if possible- it’s about making the best choices for you.
I am all about knowing when to cut losses and just take the goddamn pill, but I won’t do it blindly.
It sounds like you already have a solid bead on what works for you and what doesn’t, and in that knowledge I am actually far more optimistic about your future than your diagnosis forecasts.
Get back on the bike, keep yourself moving forward- I look forward to seeing pictures of you doing centuries at 80 and posting wrist pics.

MtV · Oct 12, 2021

Very sorry to hear that, but thank you for sharing, your attitude is inspiring.

Singular events or destinies do not provide any orientation for how it’ll be like for the majority, I’m well aware, but allow me to share a story from someone close to me:

My mother-in-law was also diagnosed with MS in her early 50s - that was in 1999. She was told she’d face massive limitations within 5-10 years.
Well, she was on a bicycle holiday this summer. Aged 73, she rode through Germany, north to south, about 1000km/620miles and is currently planning the next trip.

I do hope I’ll be reading of your bicycle holiday in 2043.

johnireland · Oct 13, 2021

The older I get the more disappointed in the medical profession I become. I just turned 79. I prided myself in having reached doing three sets of 9 pullups as part of my every-other-day exercise routine. Now I've been given a pace maker, and the extensive stretching of the muscles in a pull up is too much of a risk to the leads going from the pace maker into my heart. I honestly believe that as a group, (doctors, the insurance business, hospitals, government programs like medicare) they would rather we just die and stop taking up their time and medical budgets that they'd rather spend on younger voters who pay more taxes. I'm going through some heart issues and finally getting on top of it, but I've been shocked when my doctors ignored and minimalized my sudden increase in blood pressure, and other symptoms. Yes we have to be our own advocates, and we have to do as much of our own research as possible, because many doctors just throw drugs at us and hope it works. But they don't like to think two steps or three steps ahead, or take the time to consider all the alternatives. And the bureaucracy and dances one has to go through to get tests and treatments is often obscene. Good luck to all of us.

Wryfox · Oct 13, 2021

JwRosenthal
I never thought I had a high threshold for pain, but apparently I do. I have far less tolerance for the side effects of medication than the effects of pain- so I choose to not use medication if possible- it’s about making the best choices for you.
I am all about knowing when to cut losses and just take the goddamn pill, but I won’t do it blindly.

Absolutely. I feel the same way. Hate medication. They gave me strong steroids to lessen the symptoms temporarily, and cautioned me not to take them until after the last set of tests next week. I looked at the info sheet and was appalled. Look, I worked in the medical manufacturing field for 15yrs. I know how the FDA works(I was director of regulatory affairs for several years). It honestly doesn't take much to get something approved. Well, it takes lots of effort, yes, and data, sure....but the bar for actually improving quality of life is surprisingly low. If you've seen some of the recent commercials on TV, and the hasty laundry list of "if it doesn't help you it might kill you" side effects, you'll know what I mean. Pharma is a very expensive proposition given the demands of FDA(Approximately only 1 in 100 R&D drugs becomes successfully commercialized), so they try to commercialize anything that appears to have a benefit, some accidentally(look up the story on Viagra when you have a moment). In any case, I feel like I'm going to be a real pain in the ass come the treatment discussion.....

Wryfox · Oct 13, 2021

MtV
My mother-in-law was also diagnosed with MS in her early 50s - that was in 1999. She was told she’d face massive limitations within 5-10 years.
Well, she was on a bicycle holiday this summer. Aged 73, she rode through Germany, north to south, about 1000km/620miles and is currently planning the next trip.

I do hope I’ll be reading of your bicycle holiday in 2043.

Thank You MtV, I will never get tired of the success stories. I plan to be one myself.

JimInOz · Oct 13, 2021

That's crap news mate, but it looks like you've chewed it up and spat it out, and that's a good thing.

Many years ago I watched a beautiful and intelligent young lady spiral into nothingness with MS, because at the time it was not only incurable (still is) but also relatively unknown and untreatable compared to what we know now.

There have been quantum leaps in the understanding and treatment of MS since then so I hope you will benefit from those advances.

It seems to me that as we age beyond our "normal" life expectancy, we are rewarded with a cross to bear. I've been given mine and while it was a shock a few years ago, I'm now comfortable with it and the support/treatment I'm receiving. I've adopted the "get on with life" policy.

You seem to be doing the same, so I wish you all the best and "get on with your life".

Cheers
Jim

noelekal · Oct 13, 2021

Thank you for sharing your "award winning" attitude about receiving the diagnosis. The diagnosis is such a disappointment to read, but your words are encouraging to anyone facing severe health issues or indeed life's inevitable big problems. Thank you for taking the time to write.

May you be blessed in defeating this.

Archer · Oct 13, 2021

I think maybe without intending, this thread is looking a little like a downer on MD's in some ways. I have, unfortunately, had to deal with doctors for most of my life and on a very regular basis. I can say in all honesty, there's only one I ever encountered out of the many that I have seen, who was truly arrogant and unhelpful, and she ended up moving to the US to make more money (I only know this because we were looking at buying a house and ended up looking through hers by chance, and the connection was made).

Most that I have encountered have been willing to listen, ask questions, and always did their best to either help me directly, or send me to someone who they thought could help me when they couldn't.

Many people go to a doctor expecting immediate answers, and often that's just not possible even if mistakes aren't made. Medicine has changed from when I was delivered by my family doctor, he was the one who removed my tonsils as a child, and my brother's appendix, and he took care of pretty much every big and small thing that anyone needed help with. It's now so specialized that the time to go from one specialist to another just in itself adds to the delay.

MD's are humans, with all their inherent biases and problems like everyone else. Why the advice in the first post is so good, to advocate for yourself. But not everyone operates this way when faced with a medical crisis, so everyone is different. Some just want the doctors to make all the decisions, and just tell them what to do - personality differences in how people deal with things.

Cheers, Al

ckhaing · Oct 13, 2021

the field of medicine has been over-promised beyond their limitations (of doctors and establishments) in truly effective diagnostic and treatments options, emerging to the unrealistic expectations

to make the matter worse, healthcare providers (again, doctors and establishments) has been more and more enthusiast (to put it mildly) in profit making in the last five decades, with corporate medicine type of approach everywhere, probably the worst in US

basically $ is the driver, medicine in the back seat now a days

bigsom · Oct 13, 2021

Doctors are such garbage! Good luck!

ckhaing · Oct 13, 2021

bigsom
Doctors are such garbage! Good luck!

not all, but >95% are

Archer · Oct 13, 2021

bigsom
Doctors are such garbage! Good luck!

ckhaing
not all, but >95% are

bigsom · Oct 13, 2021

ckhaing
not all, but >95% are

Truly just uneducated and heartless idiots who don’t know the difference between smegmatic discharge and small cell carcinoma. A stain on modern society! Of course small sample sizes and anecdotal evidence is all that is needed to condemn an entire group of people out there working beyond their limits and in the face of death and morbidity. Morons! All of them!

cvalue13 · Oct 13, 2021

Archer
I think maybe without intending, this thread is looking a little like a downer on MD's in some ways.

Another angle, at least in the U.S.: many patients don’t know if they’re even seeing an M.D, given the emergence of “providers” reclassifying and renaming themselves to - essentially - cause confusion of credentials.

For example, there are “ph.d” programs in nursing, and the less scrupulous of them wear white coats (traditionally reserved for MDs) with “Dr. So-and-So” on the chest.

Similarly, the U.S.’s national association of physicians assistants just voted to change their nomenclature from 'physician assistant' to 'physician associate'. This is a move clearly intended to further nestle and blue the lines between someone with a 2 year rotation in assistance vs someone with a 4 year degree + 1 year internship + 2 residency + 2 year fellowship, etc.

Meanwhile, in my town, there’s a lawyer - who technically has a doctorates (in jurisprudence) with a “Med Spa” having signage on front saying “Dr. So-and-So” and who “prescribes” supplements to his “patients.”

The list truly goes on and on.

Which, as I’ve said before, is not to disparage the vast numbers of medical mid-levels who are highly skilled, trained, and scrupulous in not misrepresenting their credentials. I’d take a wonderful, seasoned, nurse over a terrible doctor ever day of the week.

But instead to highlight that, at least in the U.S., it’s becoming increasingly difficult for the average consumer of medical advice to know what “product” they’re actually seeking advice from.

cvalue13 · Oct 13, 2021

bigsom
Truly just uneducated and heartless idiots who don’t know the difference between smegmatic discharge and small cell carcinoma. A stain on modern society! Of course small sample sizes and anecdotal evidence is all that is needed to condemn an entire group of people out there working beyond their limits and in the face of death and morbidity. Morons! All of them!

I see now the sarcasm lost on me before

bigsom · Oct 13, 2021

cvalue13
I see now the sarcasm lost on me before

the thin razor’s edge on which the masses cut themselves.

The Medical Profession and Me

Wryfox

JwRosenthal

ghce

Wryfox

JwRosenthal

MtV

johnireland

Wryfox

Wryfox

JimInOz

noelekal

Archer

ckhaing

bigsom

ckhaing

Archer

bigsom

cvalue13

cvalue13

bigsom

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