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Q: Undiagnosed burning leg
asked by: Twistedben on April 30th, 2009
New User
I’m a 18 year old male, who has had 4 years of severe, chronic leg pain. Currently, I have seen over 19 doctors and not one can lay a single or even multiple diagnoses on. Right now, I sit at a neuropathy diagnoses, and a bunch of other random, none conclusive diagnoses.
My pain is in my left leg and only my left leg. It’s beyond severe now. A sharp pain can sometimes arise in my left buttocks. Constantly an aching, burning pain flows through the back of my thigh and as far as down to the back of my knee. The pain skips the top of my shin, but continues down the left side of my shin to my ankle. It then picks up to a burning/tingling sensation at the end of my heel/middle of my foot. It can go as far as my toes, but usually settles in the ball of my left foot, and this pain can be aching, burning or tingling depending on “God knows What.” I also, lately, have been having a new pain which arose in the entire bottom of my foot. it feels like a pool of blood is just resting in the arch of my foot. When I touch it or put pressure on it, my foot feels as if a cold wind suddenly is blowing on it. It’s a very strange pain but now has brought my to using my cane again, because once I put pressure on it, it hurts.
When I sit, my feet turn blue/purple, yes both of my feet, and though remember I only have pain in the left. Also, my knees turn blue/purple, and both my feet/knees are cold, freezing cold, always.
I have sensitivity in both sides of my buttocks, if someone was to poke my cheek, I would hit the roof.
This pain, at sometimes, especially when sitting, can spike to such a severity, that I would seriously rather prefer death.
At first they thought it was L5 herniated disc, or any disc above that. I’ve had over 4 MRIs, disproving any herniation, and also an EMG study, which came back extraordinarily good. Still though, I had a lumbar block, 3 of them for the L5 disc, which did nothing. So then I went onwards. I was then told that I was too skinny by a orthopedic and to do extensive physical therapy, well I was sorry that my metabolism was so extravagant, but I did enlist myself into physical therapy (for the third time.) Then again, it did nothing for me. I then went to a neurosurgeon, who thought that I may have a clear case of Piriformis Syndrome, which threw me, but after explanation, I believed that I may have had it. So I followed through with a series of Piriformis injections, which did very little. I also had a trigger point injection, which was terrible, but did nothing. So then I followed through with Piriformis surgery, in which they dissected my Piriformis muscle. They found a tethered nerve entrapment, (sciatic) and a small problem with the muscle, the surgeon then corrected it. The surgery was rough but I did it, and that was 6 months ago.
No positive reactions resulted from the surgery. I’m still miserable, if not worse.
I’ve also been in pain management all along this time, about 2 years. Since I didn’t get better, my pain management doctor thought maybe just maybe I had RSD, so we did a lumbar sympathetic block, which also, did nothing. I again recently had another one of these. Also I have done many steroid injections in all different areas. As well as acupuncture, all of this did not help.
My medications: I have done steroid schedules, I have done Lyrica/Neurontin which neither helped it almost seemed like the Lyrica made it worse, I am currently on: Valium (muscle), Oxycodone 5 mg, Percacet, Morphine (MS CONTIN),), and Tramadol. Pain killer’s help, but they don’t cure, we all know this…
RSD, Discs hierniations, Piriformis, and pretty much anything practical has been ruled out.
Please, if a doctor has any idea what I may have, I will worship the ground you walk on. I dumbfound doctors for some reason. My doctor thinks possibly a Spinal Cord Stimulator is my next step. I DON’T WANT THIS, I’M 18 YEARS OLD. Please help.
Thank you for reading, TwistedBen
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jrsmtavm1
replied on May 25th, 2009
New User
undiagnosed burning leg
Dear ben,

I have the same thing you have. It started in the right buttucks and went to the upper rear right leg, then moved down to my calf and finally settled in my right foot. The pain was unbearable. It would attack one area until it reached maximum pain then the pain would lessen and then attack another area going lower down the leg till that area reached maximum pain, then it would lessen then go to the calf reach maximum pain, lessen and then go to the foot, maximum pain. I would also feel like I was standing in partially wet socks even though they were not wet. Also, I would feel flowing, cold blood rushing down my calf. My right leg was almost unuseable from the horrible pain. Now it has moved to my left leg and arms. My primary doctor does not know what to do with me. I feel tingling in my hands and feet, feel pin pricks in my fingers and toes. Heat sensations up and down my legs, almost crippling from the pain on the right side and now it is attacking my right leg, calf, toes, foot. I feel similiar sensations starting in my arms and fingers. My hands are numb and my fingers feel pin pricks too. I thought I was alone and since reading your story and know I am not alone. I look forward to hearing from you, take care. Jay
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kdlee
replied on May 30th, 2009
Supporter
OMG honey--so young..Well you have kinda summed me up in all thi..I am much older but that doesn't change the pain..Unfortuantely teh Spinal COrd Stimulator might be the best course--I have read where it works..If you go this route be sure and follow the instructions to the T..Myself I am looking at another try at the pain pump that is placed in the spinal canal..I tried this months ago but had to stop the trial after getting a 24 hour epidural headache that was only relieved with a blood patch..ALl of the meds you have tried I have I have also tried Oxy Contin without help..To me this all means neurological..I have been searching answers for over 4 years and finally thing the Neuraliga is the answer as it makes more sense than naything else..

My feet will get so cold that they draw up and hurt -ah man do they hurt..I can't stand a feather touch because it hurts..My toenails turn bluish but no my knee..I always thought this might mean blood is not ciurculating right but so far no doctor has agreed with me so I just wait and see..

I have seen a Cardiologist, Neuroligst X2, PCP, Rheumatoligst, ENT, Ophthalogist, Pain Managment,PT, Speech therapist, Endocrinologist, Urologist, dentist,Podiatrist, chiropractor, andthe best was massage therapist who knows proper touch to not hurt me..I have tried-accupuncture, cortisone injections, trigger point injections, pain meds, steriod meds, antibiotics,neurotin,lyrica and all the other normal meds along this line, biofeedback, multiple pairs of shoes and clothing, vitamins, helathy foods, vegs and fruits..

I have been told I have disc disease,spinal curvature, arhtirits, andmultiple other things..

I know I haven't given you an answer but I hope it helps to know sometimes we don't get clear cut answers..

Please keep me posted on what you end up doing..DOn't give up hope, I know you hurt just dont't give up or give in to the pain..

You can PM me anytime..KD
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