Discussions By Condition: I cannot get a diagnosis.

Paresthesia? Undiagnosed Nerve "disease"?

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Andylion
  • July 18, 2009
  • 03:44 AM

For the past 3 months I have been experiencing undiagnosed nerve problems (i.e paresthesia).

It started with bladder & bowel function impairment, then a "pulling" sensation in the tailbone, then progressed to numbness and hypersensitive skin in the buttocks & hamstrings, and numbness/pins&needles in the feet (soles/sides only). I also developed numbness from the pubic bone all the way under to the tailbone (no genital sensation).

I was hospitalized for 7 days; xrays of low back & pelvis were taken, MRI of pelvis, and a lumbar puncture. I was treated with Aciclovir for the possibility of it being shingles, amnitriptyline, codeine & morphine. Aside from some mild pain relief, none of the drugs helped.

The MRI showed a mild disc herniation at L5/S1, causing minimal nerve impingement but it was not cited as the cause for all of the nerve pain I am experiencing.

Post-hospital, I have had a brain & spinal MRI, blood tests for MS, HIV, Herpes, Lyme Disease, and another lumbar puncture - all of which have come back negative. I was also put on heavy doses of cortisone steroids which did not change anything.

Although the hypersensitivity has disappeared, and bladder and bowel function normally (though the genital area is still numb), the numbness and pain remain. Acupuncture seems to be the only thing that offers me any relief.

I met with the neurologist today, and he said that he has run out of ideas; he believes that I will get better...

I am looking for answers as the medical system does not seem to have any for me. If anyone has ideas, or similar experience, please will you post a reply here?

Thank you.

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6 Replies:

  • I can imagine your frustration. Its discerning not having answers and constantly feeling not well. I understand, because I have alot of the same symptoms and alot of the same tests with no results. I am a very activer person, doing a lot of indoor cycling and yoga. I have been doing Yoga for 8 years, cycling for almost 3 yrs. My problems started with muscle pain. After teaching 5 classes of cycling a week, and yoga a couple of times, I found the pain in my legs was horrible, and I couldnt recover from my rides. I felt weak, where i couldnt even ascend my stairs in my home. So I cut my classes down to 3 a week, and more yoga. This helped for awhile (about 6months). Then it all came back with a vegence. I slowly started taming down my rides, but with no avail. I went and saw my physician who ran about a bunch of blood work ruling out diabetes, low vitamin b, and a variety of other tests, told me it was neropathy of some kind. We did an MRI of my low back, everything came out clean. Now I'm starting new symptoms of tingling that feels like numbness through the hands and feet. Bladder weakness, fatigue, anxiety issues (probably stemming from no answers.)Then off to see a Rhemotologist, where we ruled out Fybromalasia, and ran more blood work. Now my symptoms started getting worse. Tingling sensation is now increasing. Moving across whole body, starting to have issues sleeping (which has never been an issue for me.) I still havent been on the bike, and am feeling very anxious about not getting much exercise. Off to urgent care, with entire body feeling tingling, and cant breathe very well. More sleep issues. More blood work, and an MRI of the brain to rule out MS. Now off to see Neurologist, who says the tingling feeling is not from numbness but from hypersensitive Nerves. unable to give any answers. Says that I have the symptoms of a lot of different diseases, that have been ruled out already. No lyme disease, no MS, no diabetes, could possible be a muscle disorder, but not likely. Time to go see a specialist where more tests that sound awful scary to be performed. But before I do that, he suggest that I take some time off from dr visits, because they seem to be stressing me out and return to my normal level of activity. if things do not improve in 2months time, its off to the specialist. So thats where I am at now. Back to a normal workout. Sleep goes back to normal. yeah!! But tingling sensation is still all over the body. Muscle weakness is still there, fatigue, digestive issues all still there. I keep plowing through with no answers, and keep smiling. Btw, it is recommended that the specialist to do a spinal tap (which I hear are awful painful) and a muscle biopsy. I'm a young person, only 36 years of age, who is very active, and does a fairly good job eating healthy, and staying fit. I have a very busy lifestyle, and am very intune with my body, with lots of yoga. For the past 3 months I have been experiencing undiagnosed nerve problems (i.e paresthesia).It started with bladder & bowel function impairment, then a "pulling" sensation in the tailbone, then progressed to numbness and hypersensitive skin in the buttocks & hamstrings, and numbness/pins&needles in the feet (soles/sides only). I also developed numbness from the pubic bone all the way under to the tailbone (no genital sensation).I was hospitalized for 7 days; xrays of low back & pelvis were taken, MRI of pelvis, and a lumbar puncture. I was treated with Aciclovir for the possibility of it being shingles, amnitriptyline, codeine & morphine. Aside from some mild pain relief, none of the drugs helped.The MRI showed a mild disc herniation at L5/S1, causing minimal nerve impingement but it was not cited as the cause for all of the nerve pain I am experiencing.Post-hospital, I have had a brain & spinal MRI, blood tests for MS, HIV, Herpes, Lyme Disease, and another lumbar puncture - all of which have come back negative. I was also put on heavy doses of cortisone steroids which did not change anything.Although the hypersensitivity has disappeared, and bladder and bowel function normally (though the genital area is still numb), the numbness and pain remain. Acupuncture seems to be the only thing that offers me any relief.I met with the neurologist today, and he said that he has run out of ideas; he believes that I will get better...I am looking for answers as the medical system does not seem to have any for me. If anyone has ideas, or similar experience, please will you post a reply here? Thank you.
    Anonymous 42789 Replies
    • October 11, 2009
    • 04:56 AM
    • 0
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  • Hi Andylion i have similar symptoms to you as yet undiagnosed,mine started with pins and needles my right foot,weeks later numbness in my foot ,doc sent me to see neurologist,by the time the appointment came my left foot had been affected,plus my toes felt like i had glass between the little ones, my calf's and buttocks were hypersensitive and numb with swelling in the ****,i reported to the neuro guy that sitting made it worse,he said use a soft cushion for 6 months no better come back ,told him makes no diff if its hard or soft the effect is the same,so MRI on the lower lumbar region,this came back no nerve root compression on sciatic nerve,then have nerve conduction study,this was also clear,for nerve damage,had a few bloods taken clear,now got to see vascular specialist as i do have PADS,the hypersensitivity is spreading to my upper body, my symptoms are now 24/7 poor sleep have a couple of whiskys helps ,there is many conditions we may have,my favourite is Iliopsoas syndrome,because it is life style,sitting long hours lying around a lot lack of exercise poor posture etc i tick most of the boxes,i have one legs a half an inch shorter than the other, though i know have it built up ,after 20 years of not,this condition is lower back problems lack of exercise and sitting a lot causes some muscles in the lower back pelvis area to shrink ,and stop working this means other major muscles there have to work harder,this can cause compressions on nerves giving me these symptoms,long distant runners are funny enough are prone to this,let you no how i get on and hope you do also ,colin
    colin1948 9 Replies Flag this Response
  • Watch this video. http://www.youtube.com/watch?v=BvEizypoyO0 You may have B-12 deficiency which can cause nerve damage. You could probably just go to a lab and get your B-12 level tested keeping in mind that stated normal levels are felt to be way too low especially for older people. Or you could just start taking some high quality B-vitamins with B-12. My symptoms improved in a week after taking both the B-12 and the B-complex concentrate together from Biomaxx energy.
    Anonymous 42789 Replies Flag this Response
  • Hi Mobo,B12 was fine,had already seen vid from Harvard and Yale with St Thomas's in London,in research ,about the shocking true about B12 deficiency ,,there is another condition i am looking into,again i tick the boxes,it,called Alcocks syndrome or cyclist syndrome,its the compression of the pelvic Pudendal nerve,
    colin1948 9 Replies Flag this Response
  • Hello, I'm nobody from the internet and I've experienced all the same things as you have, for 5 months I was told I had nothing until. I ended up finding out I had a synovial cyst in my spinal cord which was compressing nerves and had to get an operation to remove it. Hopefully yours wasn't as serious as mine and you were able to resolve it.
    Anonymous 1 Replies
    • December 10, 2014
    • 08:37 PM
    • 0
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  • This sounds like a lot of the problems I am having. I broke the lower tip of my sacrum and I also have problems with my S1/L5. I often wonder if it "incomplete cauda equine syndrome". I went to physical therapy for 7 weeks until I had a cancerous kidney removed. Four weeks after that (complications of that surgery), I had 5 feet of necrotic bowel removed. I'm hoping to be well enough in January to readdress the issues with my feet, legs and tailbone. Please post if you find a diagnosis.
    Anonymous 1 Replies
    • December 15, 2014
    • 00:31 AM
    • 0
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