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do i have a neurological disease ?
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do i have a neurological disease ?

hi im 22 yrs old and have suffered chronic perineal pain since june 2009 i was reffered to urology by my gp and had a cystoscopy examination and some tube repairs but i was in twice as much pain there than before , few weeks later i started getting traveling pains down my left leg and then later in my left foot , i had a pelvis mri scan which showed no tumors or abnormalities , and i had bladder and prostate exam everything was clear but i was in great pain , i was then referred to orthopedic and had a second mri scan of the whole spine and result came back clear , im now experiencing severe pain in perineum / perianal area and traveling pains down both legs with severe pain sensations in both feet when urinating , low back pain , urinary frequency / urgency , weakness , weight loss , dehydration , headaches and emotional and sleeping problems , im awaiting to see a neurologist for a EMG nerve conduction test and pain  management , do you think i have some kind of neuralgia n possible diabeties because my gp is refusing ro let me have anymore blood tests and thinks my problems are mental health and not neurological , if u have any idea of what you may think i have please reply as i have suffered greatly for almost a year , im currently taking tramadol for pain relief .
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1310468_tn?1274867525
Have any of your doctors suggested saddle anaesthesia, epilepsy or cauda equine syndrome?

Saddle anaesthesia is a condition affecting the nerves supplying the perineum, buttocks and basically everything below your SIJ, which can include legs and feet.  It typically presents with numbness as the name suggests, but can also be very painful, depending upon which particular nerves are affected.  It can be caused by a narrowing of the spinal process, but that would have been picked up by the MRI - in this case, it seems more likely to have been caused either by trauma (although again, I would imagine your doctors have considered that) or an issue with the muscles around your SIJ; a contracture there can pinch nerves, which can cause all sorts of symptoms.  If this sounds familiar, and particularly if you're experiencing shooting pains in your legs, I would suggest that you see a good musculoskeletal physiontherapist and get them to mobilise the joints (mobilising an SIJ isn't pleasant, but can have instant results), work hard into the muscles and give you an exercise program to strengthen them.

Epilepsy sounds like a weird suggestion, but there are documented cased in which it presents as specifically causing pain in the testicles and perineum - it depends which part of the brain is experiencing electrical disturbances.  This doesn't necessarily cause fits either (although people experiencing petit mal seizures often aren't aware of it anyway), so it is another possibility - if this is the case, it can be treated quite easily with medication.

Cauda Equine syndrome is probably the least likely of the causes I've suggested, because it's usually caused by trauma or something like a tumour or spinal stenosis, any of which should have been picked up by your doctors.  However, it can be caused by inflammatory processes like Paget's disease or ankylosing spondylitis, so you should be checked for those too.  CE syndrome is a compression of the branch nerves where they leave the spinal column and directly affects bladder and bowel function, also causing pain in the areas you describe.  If you think this is at all likely you need to get checked immediately, as SE syndrome can cause permanent damage to the nerves; from what you've said it's an unlikely contender because loss of bowel and bladder control is one of the primary indicators, but I thought I should mention it.

I wouldn't worry about diabetes because that's a very simple test that your doctor will have performed as a standard - and if that was what was causing the nerve problems in your legs, most likely it would have affected your eyes and hands first anyway.  

Everything you've described sounds like a lower back issue rather than a brain issue, but of course worry can cause all the other symptoms like headaches and weight loss.  If it is a back problem, it's unlikely to be an issue affecting your spinal process directly as the MRI would have shown that; my money would be on something like a locked vertebral facet in your lumbar spine or SIJ, or else simply a muscle contracture (and/or underlying muscle weakness, which will happen anyway if you've been experiencing pain for a length of time - the muscle sort of shuts down to protect itself) pressing on a nerve.  Either of these problems is easily solved - the area needs to be mobilised, rubbed VERY hard and strengthened.

Best of luck, let us know if you get anywhere - hope these suggestions are helpful.
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1093617_tn?1279305602
Hi, Thank you for your question. If you’re all the reports came back normal, your symptoms could be a panic or anxiety disorder that you have faced during last event and currently experiencing. This disorder needs to be thoroughly assessed by a psychiatrist first since this can occur repeatedly and without warning.  Treatments may include psychological and drug treatments, and depend upon extent of severity of symptoms. In addition, common symptoms of spinal disc prolapse could be paralysis of muscles, pain radiating to the arms or legs, leg pain and numbness, tingling, or weakness. Warning symptoms can include loss of control of the bladder function, numbness/pain at genital areas, paralysis & spasticity of both the legs. Hope this helps.
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Avatar_m_tn
hi , ive been checked out for cauda equine syndrome and according to my orthopedic specialist there is no damage what so ever to my back as my spine mri was completely normal , i was once told it was nerve root compression of anal sphincter by another orthopedic , i personally think that pudendal neuralgia may be what i have because i dont have a sensory loss its over sensitive or imflammation but i have been told so many things , i do have muscle problems too like i get a contraction in my perineum almost everytime i finish urinateing like a pulling down feeling but i am urinateing way too often , i also get anal pain aswell but reacuuring but pain in perineum is greater everytime i urinate or get erection , i also have been getting dizzy and faint like feeling when getting erections too , im going to pain clinic on monday afternoon and my gp has arranged me to see a psychiatrist the following monday for my ocd and emotional problems , i saw an osteopath when i was 15 for low back pain and muscle spasms but my back and bladder have all been checked out and came back as fine but i am in great pain even with the tramadol painkillers , thing is im about 9stone and i used to weigh between 10 and 10 and half stone i no there can be many reasons for weight loss i just dont no what mine is , im always thirsty and do eat often and not rubbish foods either , thank you for your comment .
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Avatar_m_tn
Hi Ben,
I had the exact same problems as you and I was diagnosed with a rare neurological condition called Pudendal Neuralgia. It would explain all of your symptoms and once treated you may start to feel some relief. Please keep in mind though, this is a severly disabling condition and the longer it's left untreated the harder it is to treat. There is no known cure of fix for this condition but the pain can be managed. Also, if you do have pudendal neuralgia, it will require you to make some major changes in your life.

Remember, this is a very rare neurological condition and there are only a handful of doctors who treat it in the United States. I'm not sure where you live but if you would like more information just let know and i'd be happy to assist you. In the meantime, if you would like to research this condition you can go to 168k - 24 sec @ 56k  www.spuninfo.org/ .

I hope this helps and I wish you well!

Kind Regards,

kmo71276
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1310468_tn?1274867525
Hi Ben.

Er, I hate to point out the obvious but pudendal neuralgia is caused by compression of the nerves supplying the pudendum and surrounding areas, and is in fact pretty much what I suggested although I didn't use the specific term.  If this is what you have (and it very well could be) then for the love of God don't let the doctors palm you off with "these things just happen, we can control your pain" - a nerve compression has a specific physical cause, and as such can be identified and directly addressed.

It could also be as simple as a locked facet or contracted muscle as I suggested above; I say this because I used to periodically experience shooting pains in my legs, hypersensivity in my buttocks and bladder weakness on and off for a couple of years.  When I met my current partner (who is a very good private physiotherapist) he took one look at my pelvis and told me that my SIJ was very slightly misaligned and that some off the muscles in my bum weren't working properly (this will always happen when there is pain over a long period, as the muscle stops working to protect itself).  These things were directly responsible for my symptoms, and when I had my SIJ manipulated it immediately relieved the pain I was experiencing at the time; with exercises to improve my muscles over the next couple of months it has never come back since.

I would suggest seeing a musculoskeletal physiotherapist; a good one will have a better understanding of anatomy than most doctors, and should know exactly where to look for the cause of the problem.  For the sake of £40 ($60? I don't know where you are) for an assessment, you could identify a comparatively simple and concrete problem, and avoid being labeled as a "psychiatric/psychosomatic pain patient" for the rest of your life - which, as you probably already know, can create issues when trying to get new doctors to take you seriously.

When you see the physio, get them to check for basic things like leg-length discrepancy (most people have a slight one, but it can cause your pelvis to be misaligned and cause problems), pelvic and SIJ alignment.  Also get them to prod all the muscles of your lower back and glutes to check for painful areas - this can be excruciatingly painful, but any extremely painful areas can help to pinpoint the problem.  Explain the symptoms you are having, and ask them to carefully check all the applicable nerve paths.  I would do this before attending the pain clinic, largely because once someone is told they have a "chronic pain problem" that tends to identify them from then on both in themselves and with doctors.

Best of luck; it's possible that there's something more ominous than I've suggested going on, but it is worth looking into before you give up and accept the "neuralgia" diagnosis - which is often doctor-speak for "we don't know".
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Avatar_m_tn
hi , thank you for both your comments :) i have already been labeled a psychiatric / psychosomatic pain patient by my gp who told me he personally thinks its all in my head and was advised by a crisis letter from a different hospital then the one i normally go to because i thought of trying elsewhere and they suggested to my gp i be given diazapham and to see a neurologist , i go ignored this and perscribed me tramadol after telling me he belives i dont have anything physically wrong with me , but i no that diazapham is'nt good medication but im unable to get any sleep because of this and is what the hospital suggested but my gp said no . i am awaiting neurology referral and tests aswel as going to a pain clinic tomorrow , i saw a physio before for a sinal asessment but that was only my lower back i will take your advice soggymoggy about seeing a musculoskeletal physiotherapist aswell and i wont i believe there is reason and cause of this and its not these things can just happen too , i woke up with this pain one day almost a year ago and has gotten so much werse and in other places so i wil check that out thank you , i have alot of weakness and like contraction pulling feeling but thats always with urination , kmo71276 thanks also for your comment i have researched this condition recently and i thought strait away that this is what i may have , my life style has changed dramatically already i used to obviously be pain free but very sporting person and i used to train in martial arts kung fu aswell and go to work everyday , now im in too much pain to do either i just wish that i could be able to go back to that , can i ask if symptoms like urinary and sexual wil be reduced if i do have pudendal neuralgia because other than pain those are big problems for me too , i will be having nerve testing soon and probably muscle aswel so i hopefully will know for sure , i live in the uk and hospitals are probably alot smaller and less staffed just ive had this for a year and with waiting lists and refferals not being sent over and being lost on occasion its taking alot of time and i am getting so much werse but could be near the end of finally being diagnosed with something for sure .
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1310468_tn?1274867525
Hi Ben.

Where are you in the UK?

Soggymoggy
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Avatar_m_tn
hi , i live in canvey island essex , my hospital is southend on sea
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1300526_tn?1275775221
Hi Soggymoggy, just a comment on the diabetes thing you mentioned in your first comment just because I wouldnt want anyone to be misslead, diabetes affecting your hands and eyes first might not be all that true, I had sore feet years before I knew I had diabetes, thought it was just me feeling tired cos I worked mid shift and wore steel toed work boots.
My hands have only in the past year or so felt cramps and tingles and my eyes are so far not even affected and have been tested and I have no other symptoms of being diabetec other then high BG counts, Turns out it hits everyone diffenently and I am still not sure the neuropathy was caused by the diabetes thing but it is probably not helping any either.
Diabetes is a funny thing, people are told to watch for eye problems and thirst or frequent urinationa and there is so much more that can tell a person there is something going on, I wont go into it here but I hate for someone to think "my eyes will tell me". If not for all my neuropathy issues, I would still not know I had diabetes, it took a blood test during a complaint of pain in my feet to spot it. Other then neuropathy stuff I feel pretty good for being a diabetic I think, none of the normal things they tell ya to look for at all and I hear so many say the same, something else or a random test spotted it. Those standard brochures that tell us what to look for need seriously to be updated. Sorry for the correction, but if only I had known, coulda cought my dx much sooner if it is what caused the pain  back when it started.
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Avatar_m_tn
soggymoggy i just received my mri spine results n turns out i do have a disc degeneration of the l5 s1 but my orthopedic said no sign of nerve root impingement but he also told me few weeks ago that the scan came back normal , i have been told several times i dont have cauda equina syndrome but there is degeneration and i now think that could be cause of my nerve pain and symptoms but i also think that i may have PNE aswell . im stil waiting on nerve conduction tests but im being told i dont have this and i dont have that from specialists at the hospital and i have something its just so hard to figure out , if you have any thoughts please tell just i thought i should say bout the disc as that was what you first comment was about .
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1310468_tn?1274867525
Hi Ben.

Impingement at L5 and S1 is TEXTBOOK for the pain in the pudenda, buttocks and the shooting pain in your legs you're describing, but I'm getting confused now; this is the same MRI that was clear a couple of weeks ago?

I did say in my original reply that CE was a long shot as you haven't described the bowel and bladder weakness that are typical of that condition.  L5 S1 is too high up the spine for CE too, so I think that this can probably be discounted now - particularly since it's been proposed and ruled out by a number of doctors already.

Disc degeneration is a tricky thing to work with because there are so many definitions - but at 22 you're certainly very young for any significant form of it.  If we take one example of "degeneration" which I think might explain things, what can happen is that the tough casing surrounding the vertebral disc is weakened or broken, allowing the "pulpy" inner part of the disc to protrude into the spinal canal, interfering with nerve conduction.  This protrusion can be intermittent, and depends upon the load being put on the disc; if the load is even, the disc will stay in place, but if the load is uneven the disc will bulge.  Basically, if more of your weight is being put through the front of your vertebra (this is difficult to explain without a diagram!), the uneven distribution of force will push the disc out into the spinal canal in the middle of your vertebra.

If you have the type of degeneration described above, more than likely you will experience pain when bending forwards (or, depending where the protrusion is, it could be bending to one side that does it - since your condition affects both legs, my money would be on forward though).  I'm NOT suggesting that you do this as a diagnostic exercise though as it could do more damage; all I'm saying is that if your pain is typically worse when bending forward or sitting, or if you get sudden shoots of pain, this is probably worth considering.  If this is what's meant by "degeneration" in your case, it is difficult to rule out nerve impingement by MRI, specifically because the disc protrusion is intermittent; it could be that it was not significantly out of place when the scan was performed.

Unfortunately "degeneration" can also mean a thinning of the disc, uneven or damaged surface of the vertebrae supporting the disc and a number of other things too, each with different implications.  You need to pin your doctor down and ask what kind of "degeneration" showed up on your MRI, and also why it wasn't mentioned before.  I hate to say it, but this sounds to me an awful lot like they've told you something generic and unhelpful just to sound like they're doing something, particularly since it wasn't brought up originally.

It is also still possible that the nerve compression is post-spinal; certainly if the disc degeneration turns out to be a blind alley I would consider this.

Keep us posted - best of luck.
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Avatar_m_tn
hi soggymoggy , i no its been a while , i saw 2 neurologists over the problems i been having n have mentioned before and the first neurologist sent me for mri brain n a visual evoked potential to test me for auto-immune and inflammatory diseases which took months and suggested if those tests were clear then it was neuropathic pain coming from the pudendal nerve , like i think , he was a locum neurologist who left and was replaced by the 2nd neurologist i saw who gave me the results of the tests which were normal but this neurologist is saying i have sensory neuralgic symptoms but is reluctant to give a confirmatory test and diagnosis on the pudendal nerve and is saying there is no found cause and gave me amitiptyline and said for me to see a psychiatrist for anxiety , i have read that some NCS dont detect small fibre neuropathy but i also have read that EMG is one of many ways to diagnose a pudendalitie , i think im definately being palmed off because my new neurologist wont even listen to the idea of physiotherapy or testing the pudendal so im seeing a pelvic floor physiotherapist this week , i no we spoke before and you seem to no alot more than me and i was wondering if you think my neuro is being truthful or not , that nerve studies on the pudendal are almost impossible lol , hope to hear from you . ben
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