Progressing neurological deficits and unusual symptoms

[Mr. Doe]

I have had worsening ailments for 10 years. Diagnosed with degen. disc disease of L2-S1 by 1994 lumbar MRI. CT myelogram and discogram in 2000 revealed bulging, torn, leaking discs L2-S1 with L5 nerve root sheaths contact and moderate narrowing of neural foramen and lateral recesses at L2-S1 and a spondylolysis on L5. I take ms contin, ketoprofin, and ambien. In 1997 a failed discogram caused a CSF leak for 9 days. Then,in 1998 I was in the ER twice (a week apart) for complete urinary retention and catheterized for a month until partial function returned (upon stopping Paxil?). A cystoscope recently found a "high bladder neck". Constipation has progressively worsened to the point of almost no sensation of colon and weak sphincter despite reducing ms contin to 1/2 usual dose. For 3-4 years I have had freezing cold feet while laying or sitting-relieved with activity, plus odd fingernails. For >2 years I have had male sexual dysfunction with loss of propulsion phase. 3 weeks ago I started having severe headaches upon standing with (more than usual) severe low back pain and colder feet. The ER did a lumbar MRI and saw no cauda equina syndrome and released me. A spine surgeon thinks I may have epidural compression syndrome but none of my scans show him the cause. Work Comp. won't allow more scans so I lay down to prevent pain and headache-waiting. I wonder about spondylolythesis causing posture headaches and pain when standing but won't show on lumbar MRI laying down. The doctors think i'm nuts and evaluate my symptoms as if they are all unrelated. No leg pain-ever. Any Ideas?

[seesee]

I'm 36; I don't know your ages, but I had SEVERE pain and BAD burning in the area where my penis joins my body, rt side.  I thought it was another condition returning  but the imaging showed no signs of that and I would have a NUMB DEAD COLD penis which in itself would awake me at nights and in a panic I would get up and try to look at porn to try to get at least some kind of bloodflow going on because I know that tissues that are cold and starved of blood, die.  I even experienced shortening.  It would also happen at times driving or otherwise sitting and sometimes standingOf course pompous urologists dismissed me claiming that it is all in my head.  (All that B/S to cover their ay ess ess) when all they had to say was I don't know.

This went on for about 2 yrs. It progressed to now where I have lost 45% critical sensation in my penis head; There is a delay when I ejaculate and it does not 'feel' the same anymore.  Finally a new urologist said MRI.  I did it and it showed the smallest bulge in the L1 area which was responsible for the symptoms.  I will be going to the neuro shortly to discuss treatment.  All of this suffering and embarrassment has led me to take up a career in the medical field.  Too many men are suffering needlessly at the hands of incompetent doctors.

[I'mnotcrazy]

Hi,reading of your problems I know now that I'm not alone.I had a lifting injury in 1989,when I was 29,which seemed to get better after a few days rest-several weeks later my life was changed forever and 17 years of misery began.The first symptom I noticed was pain in the groin/right testicle and right leg(not sciatic)then constipation,then sexual problems.The local village doctor eventually came to the conclusion that I was neurotic and subconciously creating these symptoms as he couldn't find anything wrong,I eventually had an x-ray of my lumbar spine and all seemed well except for a very small anterior compression fracture of L2 and this was dismissed as 'quite common'.Well things went on and I tried to carry on earning a living but was in terrible pain and discomfort for about 3 years untill I found an osteopath who decompressed the upper lumbar area and things slowly improved to a degree-the leg/groin pain slowly disappeared as I learnt how to stretch myself every few weeks by hanging weights(100lbs or so!)round my waist and hang from a strap round my shoulders untill something clunked in my upper lumbar,then sexual sensation would return and to a degree the constipation would improve.Gradually over the years this got more difficult to do and I was having to do it every day,and further symptoms have developed,very cold feet with hair loss on the outside edge of my calves,loss of reflexes,urinary retention,further sexual dysfunction,back pain,joint stiffnes and pain(bone growth on my right elbow and wrist)pins and needles in my arms when falling asleep,neck pain,visual disturbances and insomnia.I still have to click my back every day usually in the morning in order to get my bowels moving,I do this now in a device which allows me to hang upsidedown whilst fixing my pelvis from turning and rotating my upper body untill things 'crack'(This,quite honestly is the only thing keeping me going,as if I don't do it for a few days then I'm basicly crippled up with aches and pain).Over the years I've seen many doctors,had several MRI's,but seem to be getting nowhere as most think that there is no clinicl pathology that is treatable.My MRI's all show quite serious degeneration around L2/3,L1/2,T12/L1,T10/11 and above,small bulge at L5/S1(this does give me sciatica occaisionally,but responds to manipulation with no effect on the other symptoms).Over the years of self manipulation and traction I've become convinced that particular levels are responsible for particular symptoms,and now firmly believe that leaking discs or anterior annular tears are the cause.These,apparently are notoriously difficult to image on MRI even with Gadolinium enhancement,but some really up to date laser surgeons do recognise the effects they can have,I'm thinking of in particular Mr.Knight of The Spinal Foundation here in UK,and DrYeung and DrChoy in US.Nucleus Pulposus from the disc center is extremely irritant to the nervous system and in my case I believe that the sympathetic pre ganglionic nerves have been in contact for so long that it leads to further degeneration in levels above in a sort of domino effect eventually causing so many seemingly bizarre symptoms that most doctors just find it easier to try to pass you on to someone else or else get angry when you turn up again and again in the surgery with subjective symptoms that are very difficult to detect by tests.I'm not able to afford the sort of tests and surgery offered to me by Mr.Knight,and fighting the NHS to recognise my condition has proved depressing to say the least.

[I'mnotcrazy]

Hi,reading of your problems I know now that I'm not alone.I had a lifting injury in 1989,when I was 29,which seemed to get better after a few days rest-several weeks later my life was changed forever and 17 years of misery began.The first symptom I noticed was pain in the groin/right testicle and right leg(not sciatic)then constipation,then sexual problems.The local village doctor eventually came to the conclusion that I was neurotic and subconciously creating these symptoms as he couldn't find anything wrong,I eventually had an x-ray of my lumbar spine and all seemed well except for a very small anterior compression fracture of L2 and this was dismissed as 'quite common'.Well things went on and I tried to carry on earning a living but was in terrible pain and discomfort for about 3 years untill I found an osteopath who decompressed the upper lumbar area and things slowly improved to a degree-the leg/groin pain slowly disappeared as I learnt how to stretch myself every few weeks by hanging weights(100lbs or so!)round my waist and hang from a strap round my shoulders untill something clunked in my upper lumbar,then sexual sensation would return and to a degree the constipation would improve.Gradually over the years this got more difficult to do and I was having to do it every day,and further symptoms have developed,very cold feet with hair loss on the outside edge of my calves,loss of reflexes,urinary retention,further sexual dysfunction,back pain,joint stiffnes and pain(bone growth on my right elbow and wrist)pins and needles in my arms when falling asleep,neck pain,visual disturbances and insomnia.I still have to click my back every day usually in the morning in order to get my bowels moving,I do this now in a device which allows me to hang upsidedown whilst fixing my pelvis from turning and rotating my upper body untill things 'crack'(This,quite honestly is the only thing keeping me going,as if I don't do it for a few days then I'm basicly crippled up with aches and pain).Over the years I've seen many doctors,had several MRI's,but seem to be getting nowhere as most think that there is no clinicl pathology that is treatable.My MRI's all show quite serious degeneration around L2/3,L1/2,T12/L1,T10/11 and above,small bulge at L5/S1(this does give me sciatica occaisionally,but responds to manipulation with no effect on the other symptoms).Over the years of self manipulation and traction I've become convinced that particular levels are responsible for particular symptoms,and now firmly believe that leaking discs or anterior annular tears are the cause.These,apparently are notoriously difficult to image on MRI even with Gadolinium enhancement,but some really up to date laser surgeons do recognise the effects they can have,I'm thinking of in particular Mr.Knight of The Spinal Foundation here in UK,and DrYeung and DrChoy in US.Nucleus Pulposus from the disc center is extremely irritant to the nervous system and in my case I believe that the sympathetic pre ganglionic nerves have been in contact for so long that it leads to further degeneration in levels above in a sort of domino effect eventually causing so many seemingly bizarre symptoms that most doctors just find it easier to try to pass you on to someone else or else get angry when you turn up again and again in the surgery with subjective symptoms that are very difficult to detect by tests.I'm not able to afford the sort of tests and surgery offered to me by Mr.Knight,and fighting the NHS to recognise my condition has proved depressing to say the least.

[kdck]

Mr Doe, I had an injury in 1988 that was diagnosed as lumbar instability. Now I am diagnosed with DDD L4-5, L5-S1 discs are mostly disintegrated. I have many of the same symptoms as you, slight sexual dysfunction/penile numbness, light saddle numbness, big toe area(feels swollen/tingly) ankles as well. mild urinary inc. and sphincter troubles. This has been a very slow progression. I noticed troubles starting around 1996/97. I am also leaning towards CES. I had a neurologist do an MRI and made the CES diagnosis. BUT, I have been to about 9 neurosurgeons and orthopedic surgeons that cannot see it and will do nothing about it, treating it as some type of somatic symptom. In my films, especially standing Xrays my L5 is forward on S1 more than it should be, lying down, mri etc positioning is normal. My symptoms came on slowly and my search for a cure started at the urologist, who in turn sent me to the neurologist who sent me to a long and distinguished list of incompetent surgeons.
Anyway symptom alleviation, no alcoholic drinks ever, Ice on lower back until skin freezes, lying on back with towel wrapped 2X4 under sacrum, never lie on stomach. These are the basics.
The best treatments I have had are Lumbar traction in conjunction with epidural steroid inj @ L5-S1, This does not take away pain too much, but does wonders with my neurologic problems(about 85% normal. Please let me know if you find anyone willing to help.

[Mr. Doe]

Demiguise:
  You are pretty sharp yourself and very astute. You mentioned a few things I just discovered after I did the post. I will try to respond to all your questions. After 13 years of suffering and many doctors I decided I would have to get more proactive and solve it myself if they can't or won't. Age 52, I take ketoprofin (Oruvail) for 13 years. Yes I was taking it prior to/during blood test-whoops! I tried to stop it once and had a severe flare up in 3 days-restarted the med and it took over a month to recover. Whatever is going on with me is very close to the nerves and just barely held at bay most of the time (although it is compressing the cord enough to cause the progressing neurological disfunctions of the saddle area). I was up to 540 mg/day morphine and cut that down to less than half as constipation worsened and the drug was blamed. Odd thing happened after cutting down-const. got 3-4 times worse! If I had never been put on the pain meds I would have been the ER everyday until they fixed this many years ago. The meds have covered the pain and allowed me to limp along just barely. Had some episodes of severe mystery chest pain a few years back and had a thorough work-up with treadmill-no problem. Up until 13 years ago I was working and very healthy/active. Even after 1st lifting injury and 3 bad discs I kept working, scuba diving, and motorcycling (carefully). After 2nd lifting injury things slowed down-especially after the puncture which occured during a discogram attempt to access L5-S1 disc a year later (97). I think the doctor was not experienced and punctured me multiple times causing severe leakage for 9 days. A year later I began to develope all kinds of wierd problems and ended up in the ER with full urinary retention that mysteriously resolved a month later.See my post in the neuro section of this site for details. I suspect I may have a pseudomeningocele (false cyst) of CSF that is still connected to the CSF containment and occaisionally opens up draining more CSF into the cyst causing it to enlarge and pinch the cauda equina cord more. If I am right, it must be down in the sacrum or above the lumbar area as it is not seen on a lumbar MRI. I just charted 13 years of blood tests and found high folate 21.7 in 2005. Eosinophils rose from 7-9 from 1993 to 2003-normal is 3-4. Hemo and hema are borderline low and dropped below normal a couple times. Spoon nails can mean a failure of the body to utilize iron or to properly absorb it even though it is normal level in the blood. I suspect I have pernicious anemia which causes damage to nerve and blood cells and sometimes the neurologic symptoms show before the blood tests find it. My vitiligo and the nail problems tie in nicely. The anemia may be a result of a slowed digestive tract due to meds and a pinched CE cord causing bowel paralysis. I may have several chains of illness all arising secondary to CE rather than all symptoms arising directly from CE as this has gone on so long. Because progressive CE is rare and pseudomenigoceles even rarer most doctors are not aware of them.I do have a considerable disc bulge at L2-3 but they all don't think it is causing CE though on film it looks disturbing to me. I have all my films. CT myelogram, 2 discograms, spine X-Rays, 2 lumbar MRI, 1 thorasic MRI. I have clonus in both ankles-4 beats rt. and 2 left side plus EMG of legs found trouble in right leg unable to relax (continuous signal). A standing MRI would be nice but X-Rays rule out spondylolythesis (so they say), but I can't bend back at all without severe pain. My legs are fine and pain is and has always been very low back. Urologist found high bladder neck-a sign of bladder nerve compression. Sphincter problems tie into saddle area dysfunctions. I spent 3/17 in the ER after severe episode of postural headache and extra severe back pain with super cold feet. It resolved over a week but I still have the headaches and worse back pain upon rising-standing, laying down resolves them but it takes time. Cold feet are not postural but intermittent-even in bed under an electric blanket toes and heel feel cold. I feel them with my hand and sometimes they truly are cold other times they feel warm??L-5 nerve root is compressed by the way. Like you say, saddle symptoms indicate S1-S4 perhaps. ER doc put me on amitriptyline 10 mg (used for CES)each night and it helped alot right away. I have cold hands, nose, ears, too, but feet are the worst-I wear huge down booties indoors year round! I finally found 2 docs thinking out of the box. They want full spine and brain MRIs plus arm and leg EMG. I did the leg EMG and it was horrible (the experience)-no way am I ever doing a saddle function EMG!! Somebody mentioned an anal sphincter EMG-but no way am I ever doing that (with a beating heart anyway).I never had any neck or head problems-just low back and an occaisional mid back pain dismissed as spasms. I tried 2" memory foam-not thick enough for a side sleeper! Finally found a 9" camping type air mattress 1/2 full of air to be my piece of heaven-can't sleep anywhere without it or similar low filled air mattress that can mold to body shape and absorb hip curvature to keep spine straight. I put it on top the $1500 mattress and the $500 2" foam topper and the $350 electric 2" air adjustable mattress topper. The "cheapo" on the floor is all I really need! I can even sleep all night on my back and wake up in the same position! I use a molded foam knee pillow and a memory foam pillow. A recliner works good when I am up and sitting around if I lean it back alot. Blood pressure and cholesterol are perfect. All neuro tests normal except clonus and very hyper reflexes. I suspect I have signs on straight leg raise but nobody checks. Perianal pain and loose sphincter. My symptoms match up real well with CES red flag signs (except no leg pain). I read it is not uncommon for CES to spare the leg nerves and only affect saddle area. I may be living proof. I work as an inventor now-did many things before, hope to do so again if I can get this figured out and repaired. Even if nerve damage is permanent at present level I could deal with it but if it gets much worse and can't be fixed-I'm concerned. Really appreciate your taking the time to add some very good advice and info. I really need. I need to study your comments further in more detail-hope you don't mind a few more questions. Any way I can help with your symptoms? Had all the tests I've had? Ever wake up during a discogram due to inadequate sedation? I did and i'll never forget it! I actually tried to get off the table and leave! Thanks for your insight!!

[Mr. Doe]

Thanks for your suggestion of an autoimmune disease possibility. After your mention of it and a neurologist's wondering if my problem is not a cauda equina or compression syndrome but something else mimicking those symptoms, I did a little research. Raynaud's syndrome may explain the feet and Koilonychia may explain the nails, Vitiligo may explain the white skin spots on each ankle, and Pernicious Anemia (often found with Vitiligo) may explain a number of other symptoms including nerve problems. It seems I may have a variety of illnesses all going on at the same time. The PA is sometimes mistaken for an iron difficiency which is also the indication of Koilonychia, so a few pieces of the puzzle connect in a way. Instead of all symptoms caused by a common link, I may have a chain of illness (or several chains) stemming from an initial illness or injury but branching out. Your perspective opened up some new avenues of consideration worthy of looking into and I appreciate that very much.
  I know what you mean about being disappointed in positive test results. After 13 years of progressively getting worse I am eager to find the answer but not pinning it down is very frustrating.
  By the way-what is your problem?

[myproblem]

I'm glad all the antibody tests came back normal. Autoimmune diseases are so hard to treat, and incurable. I hope that you can find an answer. I now for me that I am almost disappointed when a test comes back normal, because it means I am still not close to knowing the problem and being able to treat it. Your idea of chronic cauda equina syndrome did seem like a likely cause. You should continue to research it, and perhaps you'll find a treatment for your problems.

[Mr. Doe]

Blood tests all came back in normal ranges. Had spinal X-Rays today and saw results of MRI done in ER which found no indication of CES in the lumbar region. Neurologist today indicated more MRI scans above and below lumbar and an EMG below the waist may be warranted after his own review of lumbar MRI. Ankylosing spondylitis doesn't look like a match in this case.

[Mr. Doe]

I checked dermnet.com/thumbnail and found good pictures under spoon nails, 02.jpg and 01.jpg. Also see longitudinal ridging 02jpg. Those pictures are very close to mine. Others you mentioned are not related.
Many doctors have tried to make sense out of my many symptoms individually and separately and they have been unsuccessful. Cold feet=(circulation trouble), fingernail deform=(iron disorder), urinary dysfunction=(male bhp), bowel dysfunction=(drug induced constipation), low back pain =(DDD and spondylosis), sexual dysfunction=(sphincter weakness)and so on. Various drugs and treatments didn't work (like Hytrin for bhp and Lactulose for constipation etc). Nothing made sense until I began to wonder what type ailment could cause all of these problems to occur and develope together gradually over 10 years (what is a common link?),research steered me to chronic cauda equina syndrome or some type epidural compression syndrome, which is a very close match to all my symptoms. I posted this wondering if anybody could see any other explanation? Perhaps a pinched cord brings on secondary ailments such as Reynaud's and iron deficiency? Any ideas are appreciated. I'll look into Ankylosing Spondylitis and will post any future results I get in search of an answer. Thanks

[Mr. Doe]

I did just have some blood tests run. I asked for an ESR and an arthritic panel and WBC-I get to hear the results tomorrow. I also suspect Reynaud's syndrome for the feet and have realized I have typically cold ears, nose, and fingers. I also read that an epidural compression syndrome like cauda equina syndrome can cause cold feet. The odd fingernails began to show 2-3 years ago. They are thin and soft, have lateral lines and ridges, and have a reversed curve know as "spoon nails" a sign of an iron deficiency. Blood tests indicate iron looks fine but I am always at the low end of the normal spectrum for anemia. A surgeon told me the nails can be related to ECS as a nerve distress symptom. I will research autoimmune diseases, including scleroderma. I have so many odd things going on at the same time there must be a common link. I was in great shape until 1993 back injury and still present as healthy to those that aren't experienced with back and pain problems. Thanks "myproblem" for your reply and interest.

[myproblem]

Ankylosing spondylitis is another autoimmune disease that primarily damages the spine. This can be evaluated by comparing x-rays from over a period of time. It wouldn't hurt to ask your Dr. about it. Also ask for a Nail-fold Capillary Test. This can evaluate for Raynaud's, and Scleroderma.
Pleast post when you get your results.

Check out this link: Is this what your nails look like?
http://www.dermnet.com/thumbnailIndex.cfm?moduleID=13&moduleGroupID=349&groupIndex=0&numcols=0

More nail pics, especially look at the one that says Onycholysis. This is common with Raynaud's, and Scleroderma:
http://www.dermnet.com/moduleIndex.cfm?moduleID=13

Scleroderma website:
http://www.sclero.org/index.html

[myproblem]

Have you had any blood tests? It could be autoimmune, specifically Scleroderma. Cold feet could be Raynaud's, which is often secondary to autoimmune diseases. What do you mean by "odd fingernails"? Can you link to a picture?