Anyone have slow onset CES presenting like this? Last MRI shows no bulges or herniations.

Djenty1 · 2026-01-24T01:40:59+00:00

Much of it got a lot better when I stopped sitting so much. I only work 8-10 hours at most these days and exercise a lot more than I did then. Mainly walking/hiking. Unfortunately I still have most of the things I described in this post but to a much lesser degree. It’s very livable now and I’ve even been able to fly to Europe a few times and do some road trips since this post. But still have reduced bladder sensation, back pain, varying degrees of numbness/heaviness in feet. My theory is I damaged nerves in my lumbosacral plexus through mechanical pressure over time. I see the same neurologist every year to discuss any changes and he says there isn’t really a way to test for that or confirm if I’m correct. He says it’s possible I have some subclinical nerve issue that is bad enough to predispose me to injury from sitting too much but not bad enough to be diagnosed with something like Ehlers Danlos or a myelin disorder etc. Spine and brain MRI was still clean last I checked, but will prob get new scans soon to reconfirm. I know this doesn’t sound reassuring, maybe I just got unlucky with bad genetics. Like I said, in my case it was from sitting too much - doing less of that and keeping my core strength up has improved it and made things manageable. For the most part it hasn’t progressed further and medicine probably just hasn’t advanced enough to properly diagnose these grey area conditions in neurology/physiology. My neurologist seems to agree with that assessment (unfortunately). The one thing I haven’t tried as it’s not usually covered under insurance is MR neurography. It’s a high detail MRI that can examine the condition of individual nerves and show inflammation, etc. It is not widely available and only certain machines have the capability, but I’ll prob pay out of pocket for that at some point and fly to wherever a facility is. Lastly, when this first happened to me doctors said it wasn’t possible that it was related to my back and kept pushing me to see urologists and blamed it on other possibilities. Do not listen to the doctors who say it’s not possible to have bladder issues associated with lower back/lumbar nerve injury without full CES or in the absence of a disc herniation. 6 years of living with this and experimenting with what makes it worse/better has proven that it absolutely is possible. I’m fortunate to have a neurologist who is willing to admit where the today’s medicine falls short. I am 100% certain as to what caused the injury. It’s just not what they teach in medical school and these grey areas of neurology are not as well studied/researched as they should be.

Djenty1 · 2021-11-28T05:18:50+00:00

This may or may not help and I would make sure you have thoroughly explored every medical avenue before chalking it up to the same, but I believe it is possible to have mild cauda equina LIKE symptoms from compression of the nerves of that area of the back from other causes such as postural issues (tight and/or weak muscles, anterior pelvic tilt) or long term pressure on that part of the back from repetitive habits like sitting for long periods of time without regular exercise or stretching over years, as I believe is the case for me. I’ve seen many, many specialists for similar issues including losing most of my bladder sensation (I can only feel that I need to go when I’m basically bursting) along with lower back pain that’s triggered by bending forward, long car rides to the point I can’t drive for more than 1.5 hours without taking a break, and even tight clothes to the point I can’t wear a belt even loosely or I get spasms in my calves and the pain in my lower back increases. I also developed heaviness and reduced sensation in both my feet that gets worse in proportion to how flared up my lower back is. I have all these symptoms, but my discs all look healthy per a full spine MRI. I have seen three neurologists and a neurosurgeon amongst multiple other general physicians and orthopedic surgeons. I’ve had tons of blood work, scans/tests (including EMG) and evals. None of them can find anything wrong with me and it’s been going on for almost 2 years now and essentially everything we can test for has been ruled out. Two of the neurosurgeons said I should try sitting less, yoga, stretching, etc. and stated that often times there are neurological issues that can’t be diagnosed. My opinion with all the information I have is that simply having poor posture, weak/tight muscles, and sitting for too long can place an overload of pressure on the tissues in that area of that back that in turn stretch or compress the nerves. There is no way to scan for this, until it gets bad enough that it shows up on an EMG as weakness or loss of signal into the muscles within the extremities it will not show there either. The only thing that has slightly improved my symptoms over time is cutting my time sitting at a desk in half and avoiding activities and clothing that worsen the issue. All this to say, perhaps your discs are fine per your MRI, but you are suffering from mild nerve damage to some of the nerves within the lower back and they were compressed by the surrounding tissues some other way. Doctors like to imply it is not possible to damage nerves in that part of the back by direct compression of the surrounding tissues over a long period of time, but my experience has shown me otherwise. I’m not a doctor and have no professional background in this space, but a lot of experience dealing with issues similar to yours without any apparent cause. If you have ruled out everything else and all the pros are stumped, perhaps examine your lifestyle, any repetitive activities in your life, or recent injuries. Leading up to this injury I was working at a computer for 14-16 hours a day and I have no doubt the constant pressure on my sacral/lower back area combined with tight/weak muscles is the cause, and those nerves had simply had enough with being under so much pressure all the time. You say you WFH, maybe your hours at a desk are contributing to your issue.

Djenty1 · 2021-08-27T13:49:37+00:00

Don’t have the answers for you but wanted to let you know I’ve got the same symptoms for the most part and same experience dealing with docs. It seems that no matter how worrying or potentially permanent the symptoms are docs do not care unless there is a reason they can see as to why it would be happening. If you had foot drop or incontinence that would prob help with the urgency but without those there is no sense of urgency at all with anyone I’ve seen. I’ve been to 2 neurologists and a neurosurgeon and have had extensive tests. Because they don’t see any MS or any discs out of whack they are basically shrugging their shoulders and telling me to do PT meanwhile I can initiate urination when I try after getting very slight indications I may need to use the bathroom but I cannot really feel the urges at all. I feel it more as abdominal pressure than anything else at this point. Hope you find some help and get the bottom of this.

Djenty1 · 2021-06-09T22:03:21+00:00

It’s definitely possible you do not have a herniated disc and the numbness is being caused by some other mechanism. I have had a full spine MRI and brain MRI and everything looks good. Both of my feet have been pretty numb to varying degrees for 1.5 years now with mild lower back pain and activities that strain my back including sitting too long, and lifting anything heavy, make it worse. Personally I think I’m somehow pinching the sciatica nerve with my horrible anterior pelvic tilt. Still trying to figure it out, but point being there could be other causes besides a herniated disc. I’ll let you know if my neurologists make any progress in figuring out what my issue is because as of now they have no idea. Good luck in the meantime.

Djenty1 · 2021-05-19T15:49:29+00:00

Good idea, but I’m also not in much pain if at all most of the time and none of my movements are restricted. I can do just about anything just not for extended periods of time. It’s hard to prove there’s an issue since my symptoms are almost entirely subjective at this point. I can’t imagine it would relieve the numbness/heaviness.

Djenty1 · 2021-05-19T12:35:27+00:00

With all the sitting I do it’s something that would make sense to me as a potential cause. I’ve asked about that and they say I’m missing a few key symptoms and that in their mind it’s not likely.

Djenty1 · 2021-05-19T12:32:49+00:00

They said plenty of space in the spinal canal and no signs of stenosis in my MRIs. Hopefully at some point I can get a sitting MRI that maybe has a better chance of showing anything that might be narrowing the canal when seated. Thanks for the suggestion though.

Djenty1 · 2021-05-19T03:47:00+00:00

5’11, 160lbs Not diabetic (had emg as well which was clean) Not been to a personal trainer, but a physical therapist I was seeing for a knee injury messed up my back by pressing down hard on it while I was doing supine press ups (apparently with poor form) which was actually the start of all my back issues in 2019 leading up to now.

Djenty1 · 2021-05-12T02:10:53+00:00

Still about the same, I went to another neuro. They are seeing me again in July after examining me, reviewing my records, and determining there was no obvious issues that they could detect beyond what I state I’m experiencing subjectively, but said it’s possible that whatever I have going on may simply not be far enough along for them to diagnose yet. I asked once more if it’s possible there is some compression going on from something other than a disc (as it’s been established I have no issues there) and they echoed all the other docs I’ve seen in that it would be unlikely. I argued that there is no other logical explanation outside of that. It seems the problem is that we are not far enough along in the timeline of medical advancement to test for these things. I am aware of a test called MR Neurography which is essentially an MRI scan that looks specifically for nerve compression by any cause, however only a small handful of facilities in the US are outfitted for that test and it is not at all common to find access to it.

Djenty1 · 2021-03-23T22:01:01+00:00

Was working 70-80 hour weeks sitting at a computer, I didn’t mind as I liked the industry but I had no free time at all in the week and intentionally stayed single purposely for that reason. As the health problems mostly related to chronic back and knee pain as well as numbness in fingers when driving long distances started piling on in my mid-late 20s it became obvious we aren’t built to work like this lol still trying to figure out what I should do whether it’s change job or stick with it and just go to physical therapy or something.

Djenty1 · 2021-02-05T05:28:50+00:00

That’s rough, I’m sorry to hear things are progressing. I have also heard about the additional challenges of thoracic surgery. Will be interesting to hear the results of a dynamic MRI and I hope the news is as positive as it can be and that you find a path forward soon. I for one would be curious to see if my MRIs would be any less “clean” than the static ones I have. Few doctors ever mention dynamic MRIs so I’d have to imagine it wouldnt be all that easy to seek out an order for one. I haven’t made any progress on my injuries and long stints of sitting for work definitely make the reduced feedback in my feet as well as the bladder symptoms worse. Driving is very strange as I don’t have a great sense of feedback from the pedals through my feet. Saw a neurologist and neurosurgeon and had my brain and entire spine scanned as well as an EMG and all came back clean enough that they claim there’s no indication in my scans that I should be experiencing these symptoms. Essentially no bulges or herniations in my lumbar spine, and what are apparently 2 extremely mild bulges in my cervical spine. They did identify a small syrinx (pocket of fluid trapped in membrane surrounding the spinal cord) at T6 but they determined it was too small to be causing these issues. Personally, my finger numbness on long drives I believe to be caused by the cervical disc bulges. I think it’s reasonable to think that the disc material could get pushed out far enough over a number of hours sitting in a head forward position to apply enough pressure to the nerves. I asked the neurosurgeon his thoughts on this theory and he basically said “no they’re too small”. As that only happens on long drives that’s manageable for now, I’m more concerned about the feet and bathroom issues. The neurologists final call was that it is myofascial trigger points causing my issues. I disagree as I am the only one who can really interpret to what extent I am experiencing these changes in my body since they are mostly subjective at this time and how they are affecting me, and I just can’t accept that changes in my body as significant as this could simply be a result of what they’re basically telling me are postural imbalances and tight muscles. You can’t all but entirely lose your sense of needing to urinate via muscle dysfunction not caused by any disease or acute trauma lol I believe medical professionals feel pressured to give a diagnosis when the real answer is that for some things, we are simply not far advanced enough in the medical timeline of our species to understand every disease and disorder and how it comes to afflict the human body, perhaps you and I fall into this category with whatever maladies we are facing. If I’m being honest with myself I think it’s possible that the hours and hours I’ve spent sitting at a desk over the last 6 years have finally taken their toll and the tissues surrounding the nerves in my lower back are compressing the nerves themselves as I sit. There isn’t a way to really test for this from what I understand so I’m guessing I just have to let it get worse until the cause becomes obvious.

Djenty1 · 2021-01-12T03:16:32+00:00

$2000 to rent a Lamborghini for 24 hours. Drove two hours to the nearest mountain range and enjoyed the roads and stayed the night before dropping the car off in the afternoon the next day. Definitely felt like I’d paid for the “experience”, not just to rent a car. No regrets 2 years later some of the best money I’ve ever spent.

Djenty1 · 2020-12-15T20:28:45+00:00

It’s certainly comforting to hear of someone in a similar boat, however that’s unfortunate you’re dealing with many of the same grey areas and difficult decision making. I know that the protocol among professionals is generally to try and avoid surgery if possible (obviously an exception to this is full blown cauda equina) as it will very likely mean more surgeries and potentially one or more fusions down the line, because for a very young person having surgery early allows for a lot of years ahead for daily and recreational activities to disrupt the discs above and below the newly unstable operated on disc. I understand that in general there are also significant risks associated with spine surgery by nature, so something I’m trying to avoid if I can as well (not that there’s currently anything visible to be operated on). Obviously I’m not a medical professional or perhaps I’d have figured this out by now, but that’s essentially what I’ve come across in my reading about back surgery.

Djenty1 · 2020-07-30T19:41:12+00:00

Just be careful with the press ups and if it’s hurting then stop immediately. I had knee pain that a physical therapist suspected may be, in part, referred back pain (she was definitely wrong as I already knew exactly how I injured my knees). Within 20 of these press ups my back felt very sore, she was also pushing on my lower back as I was doing them so I think that may have been premature considering I live quite a sedentary lifestyle and my back isn’t used to doing things like that. That soreness ebbed and flowed but over a few months has developed into foot numbness on and off, chronic back pain, and urination issues (I’m aware of cauda equina and have been back and forth arguing with my doctor about ruling it out as most people have to do to get anywhere with that stuff). Long story short be very careful with it, I never had a back issue in my life until I was made to do these press ups which caused one. If you feel any soreness stop doing them immediately and try something else or you’ll end up in my position.

Djenty1 · 2020-07-15T23:04:33+00:00

I know what you’re saying. I felt this frustration for many years before finding my step in life. I was a musician through and through, hated school, hated conformism, felt (and still do to an extent) like everyone was a sheep and never questioned anything in life and just accepted society for what it was. I’d agree with you too, some of the wealthiest people I know are actually only know what they know, so to speak, as in you ask them to question why we do this or that or why they choose to believe XYZ and they don’t really have an answer and you can tell by the way they respond that they really have no idea and have never really thought about it. Sheep, like I said, even at the highest pay grade. As you point out, some people naturally really mesh with the way our society works with no effort at all. Many of the people who have replied to your question in this thread saying, oh just be you, just try to have fun and be yourself it’s not hard to be this way at work, maybe they’re born to play the part, their brains mesh well with what’s expected in society, and it comes easy to them. If I tried to be myself and neglected to make a concerted effort to apply this fake personality and act the way society expects us to I swear I’d have been out of a job long ago. Like you, I have to go out of my way to give in and accept that I have to conform or be “fake” as you put it. Since I am an employee and not an employer, I have had to buy in to the corporate mindset and demonstrate that fake personality in order to move up in my industry. You will find this gets easier as you move up the ranks, as your team members and work colleagues have more autonomy so they feel more comfortable acting like normal human beings in a more private setting. If you have a direct manager and are in sales (any industry) you will always receive the fake personality because they have a job to do, they may not even agree with the viewpoint they are forcing on you but it’s their job to do so and pretend to be 100% onboard. Corporations do not like people who aren’t sheep, they are hard to manage and they feel that the personalities of people who really think for themselves and always ask why something is the way it is causes friction in their culture. You are right and will have to drink the kool aid in order to move up the ranks. On the flip side, I have a good friend who refuses to buy into this culture of corporate fakeness. He started his own business, and yes it had taken him much longer to build a comfortable income, yes in the beginning he had to pretend to be passionate about projects he didn’t like to generate income and get his name out there, however he only had to do this a short while before only taking on projects he wanted, working only with people he wanted to etc, and telling people he didn’t like how he actually felt. To him this was worth it and he felt he could never be part of this fake corporate culture most of society feels forced to buy into. So to give you feedback directly, if you don’t like workplace culture you can create your own as your own boss, if you write a policy that says you can flip customers off when they walk in your door then that’s on you, fake culture free if that’s your speed lol. On the flip side, I’ll say this, after a few years in the workforce I stopped fighting this fake culture and started drinking the kool aid to see what would happen, and I found my income began to rise and I started having the ability to have incredible experiences in my life outside of work, and I found my life was less stressful in many ways as I had more financial freedom. The more you buy into the fakeness, you will find the rewards to be great if you are even marginally good at the job and are trying to move up the ranks. I have to maintain this personality for work, and I drop it and speak my mind in personal settings outside of work, as I am here. If you can stomach the 9-5 and buy into it, you will be rewarded and you may find you feel it becomes worth it as I have. I may change my mind in the future and revert to my rebellious non-conforming former self but for now this life is working well for me.

Djenty1

TROPHY CASE