15 replies to this topic

[Liz56]

I've run across this forum in the past when I've been looking for information on neurogenic bladder and stuff, but finally bit the bullet today and registered. My hesitation is that five years on, I still don't have a diagnosis, but I can sure relate to the discussions here about B&B and walking, and incomplete CES seems to fit. This is going to end up a bit of a long post, so hope you don't get bored.

What happened was that after years of low back pain and other arthritis type pains for probably nearly 30 years (started in teenage) I got to the point where I was getting so much severe muscle spasm in my lower back and buttocks that I couldn't walk. I'd had spasm a few times before and it had been relieved by a few days of diazepam. This time it wouldn't shift. I got admitted to hospital and had a neurologist check me out but all reflexes at that point were fine. At that point also I realised I was having a lot of difficulty passing urine and reported that to the doctor. I don't know what I was expecting from that admission, but I got treated like an idiot, was left screaming in pain and had absolutely no investigations done. I finally got discharged with just ordinary painkillers (paracetamol and ibuprofen) and diazepam 5 times a day.

Over the next three months things changed and I went into total urinary retention with overflow incontinence. I was admitted to hospital again and thought I was also going to be seeing a rheumatologist to check out lupus or other musculoskeletal problem. I ended up in the neuro ward and again was treated like an idiot, although they did catheterise me to relieve my bladder. MRI of brain and neck was supposedly normal (though they were only looking for MS). The refused to investigate my lower back (because they said the spinal cord didn't go down as far as lumbar spine). They did eventually do urodynamic studies and I think they were surprised to find that it actually showed something - a completely atonic neurogenic bladder - no sensation of fullness and complete retention. I was very quickly taught to self catheterise and sent home with no follow up.

GP put me on baclofen, and I worked up to 80 mg a day before it really made any difference to spasm, though still couldn't move my legs well enough to walk any more than about 10 yards with crutches. I also ended up with an indwelling catheter.

I had a couple of years of pretty much complete immobility, self catherisation and increasing difficulties with bowels and loads of pain. Then I had a long stay with other family and a whole lot of things fell into place - I discovered I had a strong family history of inflammatory arthritis, and what was going on with me seemed consistent with ankylosing spondylitis (an inflammatory spinal arthritis). I worked with a different GP to get onto full dose NSAIDs, and do a physio programme and also went on a low starch diet, kind of self treating for inflammatory arthritis. It all made a huge difference and I finally was able to ditch the indwelling catheter and be able to empty my bladder without always using catheters, and also walk 25-50 or even 100 yards. I also saw a neurologist who couldn't figure out what was going on, but did record that my leg reflexes weren't right, my coordination was a bit shot and I had an ataxic gait. Back home I tried to get assessed by rheumatologist for AS and got rubbished. They just say degenerative disc disease and osteoarthritis, in spite of the fact that I responded well to antiinflammatories and short course steroids. I can't get anywhere with them, and can't even get anyone to review my MRIs and xrays. No-one is linking B & B stuff to my spine stuff, and no-one is giving any recognition to the fact that my big problems started with that severe episode of lower back pain back in 2007.

So, where I am at now is that I still can't walk properly. I use crutches, and thats OK for short distances but wrecks my arms. I can't tell where I am putting my feet, so without crutches I walk like I am drunk. I have constantly buzzing feet and lower legs, but because I can feel pinprick it is dismissed by my GP. My bladder gets overfull easily, and I empty it by either valsalva manoeuvre or catheter. I don't have good sensation of bowel fullness, and can't easily empty it, often needing to do so manually. I have nasty sharp nerve pains that I think are probably around the pudendal nerve, but I also at the same time have a numb "thick" kind of feeling around my saddle area and upper inner thighs - to the point where I wouldn't feel a bikini wax at all! And all this is getting worse since I had to stop taking NSAIDs, which really makes me think that it is inflammation around the sacroiliac and lumbar area that is causing pressure on nerves. I am also now getting increasing neuro symptoms that I am sure are arising from my neck - including very frequent buzzing down into my fingers. Also get a really odd nerve rush when I strain on the toilet that sometimes goes from my toes up, and sometimes shoots up my spine and down my arms.

So, is there anyone else who has similar stuff from either inflammatory arthritis (AS or other)? Do I belong here?

Also, has anyone else had to fight to get properly diagnosed?

[greybeard]

Oh yes, Liz. You belong here all right. Welcome. By reading back over the mountain of archived posts and making use of the search function (top right), you will quickly see that you share symptoms with many others here. Like you, when I first registered here I didn't know whether I belonged or not. I was very quickly reassured and made very welcome.

Many of your symptoms mirror my own. It took from 2003 until 2008 for me to get a MRI that plainly showed severe canal stenosis L2 to L5 and foraminal stenosis at the same levels. Why none of the "medical professionals" thought to do one when the first symptoms showed is beyond me. They often seem to go for the easy option instead of doing their job properly - and it makes me mad.

Have you ever had a lumbar MRI? If not, it sounds as though you need to get one. Can you not see your GP and demand a referral to a rheumatologist to get the ball rolling? It would probably be worth paying to see one privately if your GP prevaricates.

Please feel free to send me a private message if you want any more information, but I have found it is better to ask questions in the open forum. That way you get more than one person's views.

[dreamerr]

Yep you belong here and as GB said you have many symptoms as many of us. You have all of mine and hope you don't get the rest.

I think like GB said demand a lumbar MRI. You can't listen to docs they suck. They take the path of least resistance at your expense. They don't care about patients they only care about money and making more. I am a bit down on docs since they caused my injury but they are also causing yours by not treating it. If you have CES you are beyond the time limit for a full recovery. With CES you only have 48 hours. You need to do your research and demand tests you need to get this sorted out.

Good luck and I hope you get help soon.

[airart1]

another commonality of all of us, we all are different, but we all are the same also, welcome, we will help best we can in anyway we can........

[Liz56]

Thanks for the quick replies.

Yes, I have had MRIs done. What I haven't had is anyone who knows what they are looking for really examine them properly. The report of the first set of MRIs (down as far as T12-L1) were just reported "no demyelination". No mention of anything else. I then had a lumbar one done by a neurologist in 2009 to "prove" to me that there wasn't anything going on. It did show a small central disc herniation (L4-5 I think) and some compromise of one of the nerve roots, but his opinion was that it didn't explain anything. I saw a rheumatologist last year finally, and he did another sacroiliac MRI with some imaging of the lumbar spine, but not a full set of views. He was only looking for inflammation and said there was nothing showing except normal disc degeneration. I've had a friend who knows what to look for but isn't a radiologist look at my films and say that there is definitely something going on that looks like inflammation (spondyloarthritis), but he isn't qualified to call it. I've been desperately trying to find someone to review all my imaging and compare the three sets (not all of the same areas) that I have, but no luck in the NHS. I also can't get anyone to take the bladder stuff seriously - urologists don't want to know why, neurologists dead certain its not a problem of spinal cord, and rheumatologists say no inflammatory arthritis, just normal aging and what is shown isn't sufficient to explain problems.

I really wish I'd kicked up a stink when I was first seen, but as they had decided it was psychosomatic and wanted me to see a psychiatrist I couldn't get anywhere with fighting it. Then when I finally was in a position that I wanted to complain and had someone to support me doing so discovered it was beyond the time limit. If I had an spondyloarthritis diagnosis, I am sure it would all be linked in as one of the uncommon but possible complications (inflammatory cauda equina syndrome), but I can't even get a follow up appointment with the rheumatologist.

Am seriously considering private rheumatologist but its going to be big expense if I need new MRIs done, because its not just lumbar spine - its the whole way up.

[Tarkus]

Yep, what the others said !

Be Big,
AMAC

[julibugs]

Welcome Liz from a fellow CES part time, short distance walker. Have you ever had an appointment with a spinal consultant?

Julia

[dreamerr]

Liz56, on 03 February 2012 - 07:47 PM, said:

Thanks for the quick replies.

Yes, I have had MRIs done. What I haven't had is anyone who knows what they are looking for really examine them properly. The report of the first set of MRIs (down as far as T12-L1) were just reported "no demyelination". No mention of anything else. I then had a lumbar one done by a neurologist in 2009 to "prove" to me that there wasn't anything going on. It did show a small central disc herniation (L4-5 I think) and some compromise of one of the nerve roots, but his opinion was that it didn't explain anything. I saw a rheumatologist last year finally, and he did another sacroiliac MRI with some imaging of the lumbar spine, but not a full set of views. He was only looking for inflammation and said there was nothing showing except normal disc degeneration. I've had a friend who knows what to look for but isn't a radiologist look at my films and say that there is definitely something going on that looks like inflammation (spondyloarthritis), but he isn't qualified to call it. I've been desperately trying to find someone to review all my imaging and compare the three sets (not all of the same areas) that I have, but no luck in the NHS. I also can't get anyone to take the bladder stuff seriously - urologists don't want to know why, neurologists dead certain its not a problem of spinal cord, and rheumatologists say no inflammatory arthritis, just normal aging and what is shown isn't sufficient to explain problems.

I really wish I'd kicked up a stink when I was first seen, but as they had decided it was psychosomatic and wanted me to see a psychiatrist I couldn't get anywhere with fighting it. Then when I finally was in a position that I wanted to complain and had someone to support me doing so discovered it was beyond the time limit. If I had an spondyloarthritis diagnosis, I am sure it would all be linked in as one of the uncommon but possible complications (inflammatory cauda equina syndrome), but I can't even get a follow up appointment with the rheumatologist.

Am seriously considering private rheumatologist but its going to be big expense if I need new MRIs done, because its not just lumbar spine - its the whole way up.

That seems to be a clear answer now if someone would only believe it.

[Tetracyclone]

Liz,
So this is normal aging???

What utter bull crap. Whereas docs in the USA will give an insured person endless tests because they get paid to do so, docs in the UK will declare, as you bleed out in the Emergency Room, that you are experiencing normal circulation!

Alas, my dear, welcome through the looking glass to the zany universe of being human.

Can you avail yourself of any public advocate?

My dad began having problems from spinal stenosis in his lat 50s. His symptoms were typical difficulties walking and he had fabulous insurance. After some run-around with local doctors he took himself to Massachusetts General Hospital, which is one of the best in north east USA, especially for having a medical culture where doctors consult with each other. He got his diagnosis within a few years of defining his own symptoms, then an operation- good for another 15 years.

But! when he then started having trouble again even his I'm-the-finest Neurologist acted like difficulties with urination were normal aging problems rather than stenosis-related.

By the time i came on the scene, escorting my dad to appointments because people were giving him the "old-guy brush-off", people were telling him he was very healthy for a man his age. his response, "I cannot walk, pee or poop, but I'm a model of good health! Where can I find a real doctor?"

So when I was myself injured and began to learn all about these cord injury symptoms we get, I became furious that medical people can be so crass and myopic. For goodness sake! Stenosis is a spinal cord injury, it just happens from the inside and it is not anatomically exact to call choked nerves bellow L1 a cord injury. From the point of view of treating people, this is hair-splitting.

A cauda equina syndrome is what you get when you impair the function of many or all of the nerve roots in the cauda equina area. Since these nerve roots serve sphincter and sexual function, sensation around the perineum (anus, genitalia) sensation in the legs, muscles throughout the legs, etc., it is possible to get pain and numbness as well as bladder and bowel dysfunction, sexual dysfunction and muscle weakness in the legs. Simply put, CES is damage to these nerve roots.

I get the anatomical distinction, but a doctor should know that damage to the lumbar nerve roots will cause B & B problems and sexual dysfunction.

So my poor dad, who was one brilliant man, slowly got worn down by these morons who kept telling him his problems were because he was old- an unchangeable fact.

Ahh Liz, you got me wound up...

You have been the only one thinking and pointing to what is obvious. We seem to hear a similar story often on this forum from people with CES. They have to diagnose themselves and it is an alienating and anxious journey because you think you are the lay person and the doctors should know more. CES is still largely unknown except to the sufferers.

A big welcome to you. I have to go cool off. This has given me a vicious episode of AD.

[DxM]

Hey Liz56,

Welcome to the forum Like Julibugs asked, have you ever been seen by an orthopaedic/spinal consultant? I have CES also at level L4/5 and like many others, I faced the usual delays and problems getting heard and treated within the NHS. Having collapsed in physio though, I did eventually get a full spinal MRI scan done and like yours it showed a central disk herniation, (see my profile picture for that MRI scan image).

I was immediately referred to a specialist spinal unit and saw a spinal consultant who took up the slack and quickly diagnosed me with CES and operated in no time at all. I don't know much about rheumatologists, but if you had a herniation in your spine that was visible on one of the sets of MRI scans you previously had done, then demanding to be seen by a spinal specialist might be a good way to go, especially if that's not an avenue you've already tried? Using the wonder that is the internet and the fact you get some choice about where you're sent for referrals these days, do some research and find a good consultant to ask to see and I'll keep my fingers crossed they can help with a diagnosis and appropriate treatment for your condition

This is great site and the people here have a wealth of information and personal experience to draw from. Everyone's been really helpful and welcoming to me in the few months I've been a member, so I'm extending the same welcome to you.

DxM

[greybeard]

DxM, on 04 February 2012 - 02:12 AM, said:

I don't know much about rheumatologists, but if you had a herniation in your spine that was visible on one of the sets of MRI scans you previously had done, then demanding to be seen by a spinal specialist might be a good way to go,

I thought that too but, at least in this part of the country, you can't get directly to a spinal specialist. It's against the "protocol" (presumably imposed by the medics themselves), so the route is GP referral to rheumatologist, then rheumatologist's referral to spinal surgeon if you manage to convince the rheumatologist that your symptoms are worth it. Of course you are then in the "sorry-the-first-available-appointment-is-the-month-after-next" routine.

The only way to circumvent this is by emergency admission where you still have to go through the rheumatologist phase, but at least it's done as an in-patient. My error, after my recent emergency admission, was to discharge myself before staying in overnight in order to see the rheumatologist the next morning, as at that time I didn't know about the damned protocol.


The whole setup is for the benefit of the medics - not the patient.

Edited by greybeard, 04 February 2012 - 09:10 AM.

[Liz56]

Hey, thanks all. You have given me renewed enthusiasm to fight this.

I haven't seen any kind of spinal consultant. I live in one of the scottish island areas, and we don't have the full range of consultants available with a lot of very generalist clinics. Big stuff gets referred to the big city hospitals, but you generally have to go through the local hospital first, often being seen by GPs with special interest in a particular area (i.e interest, but few skills). We also don't have the "choose and book" that england now has once you are referred.

I just can't believe that my bladder (and now bowel) stuff has been able to be brushed under the carpet for so long. Any time I bring it up its like they just roll their eyes and think "she's off on one again". Its been 5 years now, and I just really get the impression that because they haven't been bothered looking back far enough in my file to find the urology evidence, they would prefer to assume that its all psychological and I am just a "difficult patient". I also don't get why it isn't being linked together.

The last year or two I have been focussing on the rheumatology side of things because I really need more antiinflammatory treatment and am not getting it. Maybe I really would get further ahead to really push for looking at the spinal/neuro damage that has caused the bladder and bowel symptoms (and the general loss of feeling including sexual sensation). I was thinking of going back to GP and insisting on seeing a continence advisor (which I know we don't actually have in our area) - part because I really could do with some help with a bowel programme, and part to impress on GP that there really is a physical problem.

I'm also having real difficulties with my physio right now. She is giving me exercises to do that are really aggravating things, because basically she isn't treating the right condition (says that its my muscles that are just lazy from not being used). I'm due to see her again soon, and am really going to put my foot down and make her do a proper assessment before she gives me any more potentially injuring exercises.

[Tetracyclone]

Good for you Liz
!!!!!!!

[Edinburgh Colin]

I'll mirror the other comments and welcome you to the fold you withoud doubt belong here.
I can associate with you on many levels unfortunately. I have had AS for 28 years now, suffered initial symptoms at 18 and took 3 years to diagnose, all the usual - trapped nerves, slipped disc, old Rugby injury, possible sciatica etc. Anyway finally after, CT scans radio isotope infusions and scans, poking, bending and loads of talking I was referred to a rheumatolagist at a hospital dealing in predominantly geriatrics and a single blood test diagnosed AD without a doubt. All that time and money wasted!
Anyway a program of NSAiD's and life significantly improved. Symptoms included - sympathetic sciatica shooting pain from the hip down the inside of the thigh to the knee, pain and stiffness in the sciatic/pelvic joints, incredible lover back pain (Was diagnosed in the L2 to L5 area so direct pain in this area of my spine. I get most pain and problems transitioning from lying to sitting mostly when going from completely horizontal through a zone about 20 to 40 degrees from straight, shooting pains in all directions radiating from my spine, past this and I'm fine.
Over the years it's expanded a bit and my spinal flexibility has significantly reduced and my upper spine from T11 to T1 has a bit of a curve and I used to go to a Chiropractor who could not really move these joints much. I also have a crinkly, crackly neck and severely impaired movement there too, only 30 to 40 degrees movement side to side from vertical.
Also worth motioning I have reduced sensation all over my left outer thigh, no sharp recognition and you could probably have put a cigarette out on it and it would not have hurt. I used to have to watch where I stepped, if I went down a kerb without seeing it the when my foot landed and took my weight I'd get a shooting pain in the lumbar area and my leg would give way in a sort of sympathetic reflex.
Latest medication is an injection of 50mg of Etanercept/Enbrel which is a biolical drug designed to suppress the immune system and stop the disease being active and causing more damage to the spine, discs and nerves and I have to say it's brilliant. Drawback is it's immunosupressant so you need to watch as an infection will flare up very fast as there is no resistance, so respiratory and food poisoning type problems can become fatal so you have to stop right away.

To add to the problems I had a motorcycle accident in 2009 and when rolling/bouncing down an embankment fractured T4 and had resultant internal bleeding in the spinal canal, I believe made worse by the etanercept and therefore poor clotting. I had surgery on my spine where they performed a laminectomy on T1 to T7 to clean out the bleed damage, the 4 hour surgery took 6 as I kept bleeding, had 6 units in theatre and 2 units of blood and 2 of plasma in recovery.
Now I'm T3/4 incomplete and cannot feel too much of the AS pain though it does cause vicious spasms in my legs when I go through that sit/lie transition.

That was my story and some of it will no doubt ring bells. I never had the B%B problems pre SCI or what I read from your descriptions as most definetley spinal cord nerve related problems. And I've got to say I think you posted that someone said your spinal cord didn't go below mid/lower back, what a crock of #%%**. That is the most ignorant thing I've ever heard!
I would definetley do a little online research into AS as it sounds like you may well have that and if you have had it for a long time then the spine deteriorates the discs inflame, get gamaged, squeeze nerves and eventually degenerate and the vertibrae fuse together doing who knows what damage to the associated nerves. You may have some success here and if you can be diagnosed with AS and suitably treated then you should be able to tackle some of the pain and the knock on effects which can be significant.

I'm not familiar with the effects of sacral nerve damage issues so cannot comment though I have all the usual stuff though mine is generated by a much higher injury..

Sorry for the mega post, hopefully you find something that resonates with you and if I can help more then please ask either here or by PM if you prefer.
EC

[Liz56]

Colin,
Wow, so sorry to hear that on top of AS you had a SCI.

I've definitely considered AS, but with being HLA B27 negative and with apparently not showing enough on SI Xray (though I don't think a rheumatologist has actually looked at it) they won't diagnose anything. I have an absolutely classic history though, fit all the criteria for inflammatory back pain, respond to NSAIDs and steroids, and it dates back to teenage years. My father had so much that looked like classic AS, my brother has similar stuff going on, but a male cousin on my fathers side is the only one with an actual diagnosis. My nephew (sister's lad) at 18 already has chronic lower back pain. My mother has been diagnosed with RA, but she also has a lot of axial stuff and also lupus signs and symptoms so more likely some kind of mixed diagnosis. When I first really started talking to family about all the history, I had also just got hold of Carol Sinclairs low starch diet book, and it all made a lot of sense, as I also had coeliac disease but residual symptoms if I ate any kind of grains, not just gluten. In 2008 I was pretty much housebound and not walking more than a few yards from chair to bathroom and to bed. In 2009 I got my GP at the time to put me on full strength Diclofenac, did the low starch diet, got some physio (it was another country, so not NHS) and started being able to exercise and within 6 months I was improved so much that I could go back to work. Bladder and bowel even improved which made me think it was more a chronic inflammatory cauda equina rather than purely a herniated disc. Now I can't take NSAIDs any more, don't have a diagnosis to get anti-tnfs and can't take prednisolone long term (short courses were amazing!) and I'm deteriorating badly. I'm mid 50's so I'm getting told its all just age-related osteoarthritis or DDD, and if I say it started young, then they say it can't be AS because I'd be showing a lot more on xray now. No recognition either that OA can be secondary to inflammatory arthritis like AS. I've not had full spine MRI, but I could swear that I can see romanus lesions (an inflammatory sign) on some of the vertebrae that have been scanned, but thats been totally ignored. I don't know whether to push to see a really good rheumatologist, or to give up on rheumies and go straight for a spine specialist and work back towards looking at AS from there. I'm struggling with work, even though I have a brilliantly flexible job, and terrified that I might have to give it up again. If I do, then I'll also lose my house, and I'd have to move away from here and start all over again.

[Tetracyclone]

Liz, honey. you will handle this. Whip those doctors into line!