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Suffering from chronic hip/leg pain & looking for diagnosis

happycamper8979hhappycamper8979 Posts: 4
edited 06/11/2012 - 7:46 AM in Chronic Pain
I am a new member to this site so first of all I want to tell everyone hello. I have been in chronic hip/leg/back pain for 5 years and I am hoping to find someone who has my similar symptoms. I began having lower back and hip/leg pain so I went to an orthopedic surgeon who did an MRI which showed slight L5/S1 disc narrowing. I was sent to PT and given the usual meds and told to come back if it worsens. A couple of months later I was in severe pain from my lower back and I finally found a doctor who ordered a discogram since the MRI was inconclusive which showed my disc was totally collapsed. He did a Myleogram for my leg pain which came back negative for nerve root impengment so he told me a spine fusion would help my back pain but not my leg pain. He was right, my leg pain and mobility got progessively worse. I had to start using a cane and gradually the distance I could walk became shorter and shorter. I had 3 more MRI's , 2 Myleograms, and an EMG/NCV in the following years after the surgery which all came out negative. Meanwhile my ability to walk worsened to the point that I was shuffling instead of walking. My last orthopedic surgeon ordered me a power chair and wrote a letter for me to get permanent disability. I have been confined to a wheelchair for over a year . The worse part is my inability to sit on my left side, I have to lay over on my right side. I am mainly confined to my home because of not being able to sit, I cannot go to the movies, shop, visit friends, etc. . I found a doctor in Nebraska (850 miles away) who operates on "Trigger Points" which are highly sensitive bundles of muscle under the skin . There are many specialists who treat tp's with injections and massages but he is the only doctor who actually operates on a trigger point. After much research and being desperate for a cure I decided to try him. I have numerous sensitive areas on my back and hip so he began injecting each area with numbing medicine to try to evoke my pain and to see if it would help my mobility. He found one area near the spine in my lower back, which he injected.. He told me to walk down the hall ( since I came in a wheelchair I thought he was crazy). I took one step and then another, before I knew it I was jogging down the hall with no pain! I was amazed, how could a numbing shot make me not only walk but run? The effect of the shot lasted for about a hour, I could walk, run and even sit without pain. The doctor took me to surgery and looked under the skin in that area but he couldn't see anything that would be causing my pain . After the failed surgery he gave me many more diagnostic injections and found at leat 8 more trigger points ( all in a line from my lower abdomen to my spine) in which I was able to walk a short distance . The doctor said I had too many trigger points and he was hesitant to take me back to surgery because he was confused and had never seen this in a patient before. I went back home with the same pain and feeling very discouraged. That was abount 8 months ago and since then I have reseached everything I could on the Web and in medical books. I contacted The Mayo Clinic in Minnesota but after looking at my negative MRI they said they couldn't see anything they could help me with. The last Neurosurgeon I saw diagnosed me with RSD, which I am having trouble accepting. RSD has many symptoms including sweating, temperature changes in the involved area , burning and many more. The only symptom I have is severe, chronic pain.
I have pretty much tried every procedure, injection, medicine, etc. in the book to no avail. I am looking for someone out there that has the same symptoms as me (and if you have a diagnosis too that would be great!). It would be nice to know that I'm not the only person out there going through these very confusing and painful symptoms. Even if you don't have my symptoms, some words of encouragment would be very uplifting. Thank you for bearing with me till the end of this long post!
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Comments

  • I can't give you a diagnosis, but I can relate to pain, as I'm sure just about everyone here can.

    I just wanted to drop a line and tell you hello and wish you the very best of luck in finding the cause of your pain. All of our pain is individual and I wish that we could all walk into the doctor's office and come out knowing exactly what's causing it. Unfortunately that's not usually the case.

    It's frustrating, I know, to not know exactly what's causing your pain. Are you seeing another doctor currently? Sometimes a fresh pair of eyes may pick up on something that another doctor may not have. Just an idea.

    You've found a great place to come and talk, laugh, share, cry, and meet people who can relate to how you're feeling.

    Best wishes to you in your journey! :)
  • I have heard of trigger point injections, but never the operation. Sounds like you've been through a lot! RSD does sound like a diagnosis that would be hard to deal with!

  • Hi, I understand exactly how you feel, I was born with cong kyphosis, I am now 31, had surgery in 99, T11-L2 fusion, with harrington rods, and screws, which for abt 2 yrs worked, then herniatd disc in 03, since then it has gone progessivly downward, I have severe right sid mid thorasic pain, also low back pain with sacroliliac and right hip pain, I have had a bone scan, mri, and ct, ortho surg only said oseto arthritis, ddd, and lists post laminectomy syn on my sheet, I cant walk, sit, stand for more than 20min at a time, can't explain why pain is so unbearable, said won't operate due to think I wld come out worse than before, I've done hydro therapy, inj in sacro, and cervical area, tens, and chiro all with no relief, had to stop narco pain med due to stomach issues, now are talking about a nerve simulator. Is a discogram diff than mri, or ct?, I also don't knw what to do. good luck to all
  • I am so sorry it has taken me so long to respond to
    your question about a discogram, I have not had accesss to a computer for awhile. A Discogram is an enhanced x-ray examination of the intervertebral discs. The dye makes the disc clearly visible on an x-ray film. After my MRI showed only a slight loss of disc space my orthopedic doctor decided to do a discogram because I was in such severe pain. Thankfully he did because it showed my L5-S1 had totally collapsed. Thanks to all of you who responded to my introduction, I hope to hear from more of you soon, especially those of you whose tests are negative but you are still in severe pain.
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