The Medical Profession and Me

Wryfox · Oct 12, 2021

I was just diagnosed with MS(Multiple Sclerosis). But I am frustrated with the medical profession as it took three years to get here.

(BTW, MS is an immune system disease where your body attacks the lining of your nerves and over time damages them to the point where body processes(movement, digestion, thinking, etc) become compromised permanently.)

I am in my 50s and this complicated the matter, as I am atypical for the diagnosis(usually happening in 20s/30s). But despite that, I have learned a few things during the journey to figure out what was happening to me.

1) I am an athlete. I have been my whole life. Apparently this also complicated things. The medical profession is tuned to the average person. Exceptional (ie far off the average person) are unexpected and harder to diagnose due to factors many doctors aren't familiar with.

2) Trust your body. Only you know it best. If something feels consistently wrong, it probably is. Doctors can only go by a diagnostic analysis. Theorize, Test and Review results. But YOU know what you feel.

3) Describe what's happening as thoroughly as possible, as factually as possible, and in the language of medical professionals if possible. I learned that understanding what to call what I was feeling was very very important. DOCUMENTING the symptoms over time was also important. I found this was critical to making a strong impression, at minimum that I was very serious.

4) Don't accept simple answers. Occam's razor. The simplest explanation is most commonly true? Not always. I was told repeatedly my symptoms were due to "getting older", OR I was "exercising too much". NO, and NO.

5) Don't accept a BS answer. If the doctor is not asking you for more information, they are the wrong doctor for you.
A good doctor will dig in to understand what you are feeling. These doctors are rare. When you find one, make sure you tell them that they are rare and that you appreciate it. A good relationship with a good doctor is pure gold.

I remember the old joke that all you need in life is a good doctor, a good accountant, and a good priest. I can vouch for two of these....

6) Don't give in, Don't give up. I KNEW something was wrong. I KNEW it. Really pushing to get it evaluated properly took time to understand the medical profession. Getting that across required me to learn a new language and become a warrior for my own health. A breakthrough occurred where one doctor actually thought it was depression and tried to convince me of it. He send me to his partner who was a psychotherapist. She not only thought his answer was BS, but also gave me a Medical 101 on how to advocate for my own health. She understood my situation completely and saw how frustrated I was. Best thing she did was reassure me that I needed to keep pushing. Doctors are human. Despite structured medical training, they all have their own experience and learn their own way of fitting symptoms into boxes. Don't get put into a box.

7) MS is not the disease it used to be. 40yrs ago it was virtually a death sentence. 20 yrs ago it was considered a disease of exception. Meaning, if you rule out everything else it could be neurologically, then its MS. NOT TRUE ANYMORE. It is as much a disease of inclusion as it is exclusion. Yes, they still need to test to make sure its not something else that mimics the same symptoms (like cancer). But there are diagnostics that can confirm it's MS. I've spent the last three months doing test after test after test. MS IS a disease that requires confirmation, as the treatment is lifelong. The good news being that the current treatments are quite effective at suppression of symptoms, although the disease itself is still incurable.

So the good news? Well, it's figured out now. I am told that at my age, it is not likely genetic(as apparently most are). The other big way to get MS is by a trigger. A serious illness, particularly a viral infection, may spark the immune reaction that causes MS. I have had several serious infections over the past few years(West Nile, Tick borne, COVID), so take your pick. This isn't perfect science, and much is still unknown, but I am buoyed by the extent of research into autoimmune diseases like this, so the future looks bright.

Donn Chambers · Oct 12, 2021

Very sorry to hear this. My father-in-law and a neighbor both have MS and both had it occur in their 50s. My father-in-law is now 82, and although he is confined to a wheelchair, he is still mentally fit, which is the important thing.

Good luck to you in your treatment. My neighbor is getting treatment at a local university hospital with some experimental therapies and is doing well.

krogerfoot · Oct 12, 2021

I'm sorry for what you're going through, but the advice you've given here seems superb and likely to help people. I'm glad you have a clear-eyed view of the ramifications of this diagnosis as well, including the parts to be hopeful about. My uncle had a diagnosis of MS decades ago and he has managed it very capably (he was also an athlete in his younger days). Good luck with everything.

Spruce · Oct 12, 2021

Hi @Wryfox,
Very sorry to hear the news.
Good luck to you and your family in facing this.

cvalue13 · Oct 12, 2021

Wryfox
The simplest explanation is most commonly true? Not always. I was told repeatedly my symptoms were due to "getting older", OR I was "exercising too much". NO, and NO.

First and foremost, I appreciate you sharing; best of wishes, and surely such a positive outlook already changes the landscape for you!

As only partial context to the various challenges of patients such as you and their physicians, it’s also worth remembering the disproportionate number of - I’ll call it - “illness seekers” encountered regularly by physicians. There are, especially in the western world, a large and still growing number of folks who are certain they are sick despite no objectively quantifiable data to support it. It’s essentially a mental health crisis, which physicians are loath to discuss or admit. When such mental health issues become a regular part of their practice, physicians can too easily but understandably become dubious about certain constellations of symptoms. No doubt, patients such as yourself bare the brunt of those consequences.

I’m not saying it’s justified or good, but only that it’s part of what a patient such as yourself is up against.

All your notes above, RE documenting info precisely, etc., are surely welcome information to both patients and physicians alike.

Wryfox
I am in my 50s and this complicated the matter, as I am atypical for the diagnosis(usually happening in 20s/30s).

As I’m sure you’ve come across by now, the average age of onset is well documented to vary depending on distance to the equator: those furthest from the equator have MS onset earlier (and there are higher incidents of MS further from the equator), while those nearer the equator on average have onset of MS far later in life (and there is fewer overall incidents of MS nearer the equator).

While these trends are well documented, the causal reasons for the trends are less clear but for obvious reasons it’s thought that exposure to the sun and/or vitamin D levels play some role.

Perhaps all your athletic years outdoors in Florida (if I remember correctly?) have further thrown the physicians from the diagnosis!

In any event, you’ve an inspiring take on it all and are clearly the sort to have MS be but a blip in the story!

CB

Walrus · Oct 12, 2021

Sorry to hear but cool the way you are dealing with it. You come across as a very decent person and I wish you the best. I see a lot of people deal with some tough stuff everyday and while attitude doesn’t make everything better it certainly can play a part in how ones body deals with things. It’s always sad to hear the people we are familiar with deal with tough stuff but it’s just a fact of life. I shall send instant positive karma.

Wryfox · Oct 12, 2021

cvalue13
First and foremost, I appreciate you sharing; best of wishes, and surely such a positive outlook already changes the landscape for you!

As only partial context to the various challenges of patients such as you and their physicians, it’s also worth remembering the disproportionate number of - I’ll call it - “illness seekers” encountered regularly by physicians. There are, especially in the western world, a large and still growing number of folks who are certain they are sick despite no objectively quantifiable data to support it. It’s essentially a mental health crisis, which physicians are loath to discuss or admit. When such mental health issues become a regular part of their practice, physicians can too easily but understandably become dubious about certain constellations of symptoms. No doubt, patients such as yourself bare the brunt of those consequences.

I’m not saying it’s justified or good, but only that it’s part of what a patient such as yourself is up against.

All your notes above, RE documenting info precisely, etc., are surely welcome information to both patients and physicians alike.

As I’m sure you’ve come across by now, the average age of onset is well documented to vary depending on distance to the equator: those furthest from the equator have MS onset earlier (and there are higher incidents of MS further from the equator), while those nearer the equator on average have onset of MS far later in life (and there is fewer overall incidents of MS nearer the equator).

While these trends are well documented, the causal reasons for the trends are less clear but for obvious reasons it’s thought that exposure to the sun and/or vitamin D levels play some role.

Perhaps all your athletic years outdoors in Florida (if I remember correctly?) have further thrown the physicians from the diagnosis!

In any event, you’ve an inspiring take on it all and are clearly the sort to have MS be but a blip in the story!

CB

I have found that there is very encouraging research relating to vitamin D and MS. Actually, astonishing. I just read a paper that summarized about 80 other papers re vitamin D. It's amazing the apparant relationship, and is considered a key part of potential treatment. My doc said megadose for next three months as my Vit D was critically low, particularly for my outdoor activity level. Some research shows doubling vit D levels can potentially eliminate relapses. So yeah, darn right l'll do it.

cvalue13 · Oct 12, 2021

Wryfox
I have found that there is very encouraging research relating to vitamin D and MS. Actually, astonishing. I just read a paper that summarized about 80 other papers re vitamin D. It's amazing the apparant relationship, and is considered a key part of potential treatment. My doc said megadose for next three months as my Vit D was critically low, particularly for my outdoor activity level. Some research shows doubling vit D levels can potentially eliminate relapses. So yeah, darn right l'll do it.

Yes, my wife is a dermatologist and for various reasons has myself and our two sons on regular vitamin D supplement (but to any others reading, do only as a physician advises, as vitamin D can have certain drawbacks as well).

Why a supplement and not more time in the sun? As a dermatologist and former chief resident at MD Anderson, she knows too well that the risks of cancer far outweigh the incremental benefits of UV-derived vitamin D 👍

Canuck · Oct 12, 2021

I heard of an instance some years ago, involving an individual who was suffering from declining health, finally ending up in hospital. This was apparently a hospital associated with a university, as patients were regularly visited by doctors, and pre graduate medical students. On one such visit, the physician was describing this individual’s case to students, detailing the fact that there had been no diagnosis! One student commented that the patient had Lyme disease. That proved to be the case!

My late sister had lived for a number of years in a town of about 4,000 people. There was not a resident doctor or clinic. Doctors paid irregular visits to this town. My sister endured years of declining health, and despite such medical attention as was available to her, and frequent trips to hospitals in larger centres, her health kept declining. Finally, in October of 2012, she was rushed to a hospital in a nearby town where her condition was stabilized, then she was rushed to hospital in a city some miles away. She was there for thee days, and on the day she died, she was diagnosed with ALS. Lou Gehrig’s disease!

All the best in dealing with your health situation.

arturo7 · Oct 12, 2021

Speaking as someone who's been dealing with a long term medical condition, I'd say the OP is spot on; not all doctors are good doctors. And even with the good ones, you must remain vigilant.

Waltesefalcon · Oct 12, 2021

I'm sorry to hear about your diagnosis. Do you know which type it is that you have? I watched MS kill both my grandfather and my father. It can be rather brutal, luckily for you if you've made it into your 50s with your mobility then you're ahead of the curve.

Archer · Oct 12, 2021

Sorry to hear this. I have a niece in her early 30's with this diagnosis (she is a FIBA certified basketball ref, so in very good shape), and my next door neighbour was diagnosed at around age 50. With him, it progressed over the years and he tried just about everything that he could. Trips abroad for the "treatment" of clearing "blocked veins" that had been "proven in studies" to work. Of course it didn't work, and they spent a good chunk of money finding that out.

He was eventually wheelchair bound, and they moved next to a lake close to where we live to allow him to have better views during the day. He eventually needed 24 hour care, and last year ended his own life (medically assisted, which is completely legal here). I believe there are more or less aggressive types, so knowing which type you have is important.

Wish you the best!

Wryfox · Oct 12, 2021

Waltesefalcon
I'm sorry to hear about your diagnosis. Do you know which type it is that you have? I watched MS kill both my grandfather and my father. It can be rather brutal, luckily for you if you've made it into your 50s with your mobility then you're ahead of the curve.

Part of the frustration is the bevy of tests and time it takes. Three months of tests now and I had more tests yesterday, have more on Thursday, and last one next Monday. Then they will know what type, and the final assessment of treatment. I'll be happy to stop scheduling my life around going to doctors and labs. That's stressful all on its own.

If it's all for good, it will be worth it. As they say, the only way out of a bad situation is to get through it.

Wryfox · Oct 12, 2021

Canuck
I heard of an instance some years ago, involving an individual who was suffering from declining health, finally ending up in hospital. This was apparently a hospital associated with a university, as patients were regularly visited by doctors, and pre graduate medical students. On one such visit, the physician was describing this individual’s case to students, detailing the fact that there had been no diagnosis! One student commented that the patient had Lyme disease. That proved to be the case!

My late sister had lived for a number of years in a town of about 4,000 people. There was not a resident doctor or clinic. Doctors paid irregular visits to this town. My sister endured years of declining health, and despite such medical attention as was available to her, and frequent trips to hospitals in larger centres, her health kept declining. Finally, in October of 2012, she was rushed to a hospital in a nearby town where her condition was stabilized, then she was rushed to hospital in a city some miles away. She was there for thee days, and on the day she died, she was diagnosed with ALS. Lou Gehrig’s disease!

All the best in dealing with your health situation.

Your comment is interesting re the Lyme disease. That was actually the first test I was told to take(that and Rickettsia, otherwise called Rocky Mountain Spotted Fever). Both negative.

Both Lyme and Rickettsia are becoming more common here in Florida. My brother-in-law's brother had undiagnosed Lyme disease for 2 years. He was finally diagnosed after it had progressed to the point where he lost his job, then his marriage, due to the intense symptoms, which were mistaken for depression, and of course the depression medication had no effect. Then he tried a new doctor, and bam, he got sorted out. Took years for him to recover from the illness and put his life back together. Lyme can be quite a secret illness.

Archer · Oct 12, 2021

Unfortunately there are many illnesses where the MTTD (Mean Time To Diagnosis) is quite long. I have one, but in my case I was lucky as it only took me about 3 months. My family doctor missed the mark completely, and when I saw another doctor they had a hunch, and sent me to a specialist, who did the testing to confirm it. This is a long time ago, but back then the MTTD was 7 years for this particular illness.

It was just simply not well known at the time, so after I joined a group in our province that dealt specifically with this disease, one of the things they were in the middle of was raising funds to produce, print, and mail (before internet) a pamphlet to every family doctor in Ontario, showing them signs of what to look for and how to proceed.

You have given very good advice for people to advocate on their own behalf. People need to be active participants in their own care, and if possible do what you can to move the science forward. I am currently participating in my second study that is related to my illness (last one was back in 2004), so I try to my part whenever I can to help move things along.

JwRosenthal · Oct 12, 2021

I’m sorry you are going through this @Wryfox - I don’t wish this on my worst enemy.
I use to be very fit, I ran 4-5 miles a day, 4 days a week and did yoga weekly to stretch out everything that running puts out of whack. I worked for the National Park Service- part of my job was hiking to some of the most remote locations in the country to document historic structures or cultural resources via large format photography. I took a few hard knocks in that time (watch related- had the bezel pop off my Speedy going down a ravine and the bracelet implode on my 16750 going down a culvert), but always walked it off.

In 2015 I stopped sleeping. I had always been a light sleeper, but I couldn’t fall asleep. I would get into a lucid dreaming state then wake up- toss and turn and it would start all over again. This went on for months, the lack of deep sleep started to take its toll, they put me on Ambien to help me sleep- but I had no further info to give the doctors other than “I keep waking up agitated, I can’t get to sleep, I don’t know why”. It wasn’t apnea- they tested me-, I did the sleep studies, I wasn’t buying their machine.
I continued running and doing yoga, but I found I wasn’t recovering from the runs as easily so was shortening my distances and had a harder time holding positions in yoga (my legs would start to shake and then would collapse). I was getting concerned. By 2017 I started having food allergies, wheat, dairy, canola oil, black pepper…I changed to a paleo diet- it helped- less inflammatory, but I still wasn’t sleeping and I was now suffering from constant full body aches (like I had run a marathon the day before), random sweats, body swelling, chronic fatigue, and tender points on my skin and body).
I was diagnosed with fibromyalgia. The symptoms continued to worsen, I could barely walk more than 1/4 mile without having to sit down (more like wanting to lay down) and my boss finally pulled me into his office asking what was going on- he had noticed my work had been suffering- he was incredibly understanding- I didn’t know what was wrong- nobody did.
I went to a specialist at Hopkins, he ran every blood test, full physical- he recommended I seek psychiatric help- I was perfectly healthy- I wanted to tell him to go fυck himself, the pain was real.
I went to a holistic medicine Md who was of course out of pocket. She put me on $300/mo of supplements, stool and urin tests- she said it could be lymes disease, and I was thrilled- at least a diagnosis and it would fit with my previous line of work! But alas, no Lymes disease- we were back at nothing (it’s truly scary when you are praying for it to be Lymes disease so at least you have a diagnosis).

Finally by early 2019 I went to a rheumatologist about my fibromyalgia and he asked very specific questions about the origins of my pain- where in my body did I hurt most, was there a point of origin. The most I could say is it felt like it radiated from the center of my body- in my back, and went out like a sunburst to every digit. He ordered an x-ray, the first X-ray ordered by any doctor since it had all started back in 2015. When I came back to his office he pointed to the X-ray and asked “how did you do this?”. What he was pointing to was my L5- the lowest and largest vertebrae on my spine. It had broken and shifted forward and down into the pelvis by 7mm, pulling all the nerves that run through the spine with it- 7mm…think about that, how much stretch that is for all of those nerve bundles. Nobody caught it- he did. In addition I had torn my left IT band in 3 places and it didn’t heal properly.
I had spinal fusion of the L4/L5 in November of 2019 and have spent the last 2 years dealing with the nerve and soft tissue damage with PT and exercises (and monthly injections to the leg, hip and lower back). Hopefully I will run against soon- I just got the green light today from the surgeon- the bone is officially healed (although the nerve pain is still there).

Bottom line, a structural failure that I didn’t notice got progressively worse and my body compensated. The lack of sleep caused a cascade of system failures that brought on the fibromyalgia, food allergies and fatigue and muscle weakness (my body literally couldn’t recover from a small hit to the system like a simple food sensitivity or walking a few blocks). As your systems fail, cortisol goes out of whack and the adrenaline kick in to keep you going, but those too get exhausted causing crashes- all of this leads to depression, anxiety, panic, paranoia, suicidal thoughts (death sounds appealing when you suffer from chronic pain with no end in sight).

I had some piss poor doctors, but I also had some wonderful ones- I just needed to be able to communicate what I was feeling and that took a very long time to articulate.

I agree with your @Wryfox - when you know something isn’t right, don’t stop trying to get the answer to the cause and work doggedly to finding the right path for you.

Walrus · Oct 12, 2021

I used to attend some spiritual retreats when I was younger and time seemed more plentiful. They were held at a monastery that devoted itself to doing just that.
I showed up early with a buddy and the members of the previous retreat were still congregating out front talking and waiting for rides. They were all in wheel chairs. It was a retreat for those with spinal injuries or other events that left them wheel chair bound. As I walked up to the entrance a few of them said in unison, “here come the TABS”. I had no clue what they were saying but I looked at them and they had smirks I could tell they were not being malicious so I asked them what “TAB” meant. They informed me it’s what many people in wheelchairs refer to people walking around as, it meant “Temporarily able bodied.” Then I heard from five or six of them stories that lead to them spending life in a wheel chair. It boiled down to one day they could walk, do sports and the next they couldn’t. I’m pretty sure I was like 22 at the time and that brief meeting with that group of fellas and the “TAB” thing and their stories has never stopped resonating for me.
It don’t matter who you are or what you got in one minute, in one millisecond your entire life can change. It serves us well not to forgot that, or I should say it serves me well.
How many times did @Wryfox story play out today around the world. Some people experience such things and couldn’t openly post about it so just telling the story can be a comfort to others. We will never be alone in suffering. I’m of a belief there must be some reason for the suffering we have since it seems to be universal. I don’t pretend to know that reason and maybe I’m wrong. Oh well reread that post and this is what came to mind. If we ain’t hurtin yet, we are TABS.

Larry S · Oct 12, 2021

So sorry to hear about this. Yes, one needs to persist in advocation for ones own health. Sadly my experience with Doctors in Florida vis a vis my Parents and In Laws has not been positive. Keep fighting. If you have not found a concierge physician, it is highly recommended.

cvalue13 · Oct 12, 2021

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

Dan S · Oct 12, 2021

I am hoping for a good result @Wryfox. My wife's cousin was diagnosed about 15 years ago and she is now in her 50s and still having only very minor symptoms as the result of consistent treatment and taking care of herself.

The Medical Profession and Me

Wryfox

Donn Chambers

krogerfoot

Spruce

cvalue13

Walrus

Wryfox

cvalue13

Canuck

arturo7

Waltesefalcon

Archer

Wryfox

Wryfox

Archer

JwRosenthal

Walrus

Larry S

cvalue13

Dan S

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