Meralgia paresthetica or mimic?
(St. Paul, MN)
My original injury was 23 years ago while lifting a table at work, causing one herniated disc and one bulging disc. I also had numbness on my right lateral thigh, but because they couldn't find anything to explain that on the MRIs, the doctor said I had "bizarre" symptoms.
After spending about two years of resting my back, time in physical therapy and finally two steroid shots in my SI joint, I was able to start a walking program which helped my back, but a small area of numbness persisted on my lateral right knee area.
For about eight years afterwards I would have minor "flares" on and off. My doctor would have me take 12 Advil a day and use a back brace until I felt better.
About 13 years ago, I had a "flare" of pain in my lower back, in my hip and numbness on my right lateral thigh, but after some relief, it came back with a vengeance and hasn't gotten better since.
Once again the MRIs showed nothing and I was sent to a physical therapist using exercise machines (which made it much worse); then to a pain specialist. I was given steroid shots in some facet joints, an IDET for an apparent tear in a disc and two shots in my SI joint. I only had good pain relief from the SI joint shots. On the third day after the second SI joint shot I felt great, but the relief lasted only one day. The pain specialist said that the pain relief wasn't long enough to indicate an SI joint problem, so he gave me no other treatment.
I have also seen a specialist who gave me steroid shots in the LFCN area, but that didn't relieve my pain. A physiatrist gave me a steroid shot in my hip for possible bursitis, but that did not help and he then diagnosed my problem as meralgia paresthetica.
These days the pain is disabling, causing me to have jolts in my butt, hip and down my leg if I've walked too far (about two blocks), sat too long (about 45 mintues) or stood in one place too long (about 10 minutes). I have to lay with a bolster, legs at 45 degrees with the right ("bad") leg higher than the left to rest. I use a cane when walking to take some of the weight off of my right leg, which seems to help.
I do have numbness, tingling, burning pain and extreme sensitivity to light touch on my right lateral thigh, explaining the meralgia paresthetica diagnosis. However, I also have pain in my lower back, pain in my hip and sometimes in my groin area. When things really get irritated, I have lightning-like jolts in my butt, in my hip area, down my leg and the top of my toes go numb. This can't possibly be 'just' meralgia paresthetica, can it?
Abundant MRIs have shown nothing wrong. They do elevate my legs somewhat while I lay down for the test to ease the pain, so I'm wondering if that is giving a false reading. I've even had a standing MRI, but that, too, showed nothing. EMGs have shown no problems. The doctor says there is no weakness in my leg, but sometimes my leg seems weak to me.
For pain, I am on gabatril (an epilepsy medication), which is used off label to slow down the pain signals and trick your brain into thinking the pain isn't so bad.
I've been told to take my medications and learn to live with this. How does a person learn to "live with" lightning-like jolts of pain down their leg?
I do have "good" days and "bad" days, depending on how much I am up and around. This is getting hard to live with and I'm tired of having to lay down so much of the day to get some relief of pain, since the drugs only take the edge off but do not eliminate the pain.
What's a person to do?
There's nothing simple about your case, particularly as much of the early history is buried. Perhaps if you had access to the early examination and tests that were done, the waters would be a little less muddied.
But you are right. Meralgia Paresthetica would never affect the foot, and lateral thigh numbness is not necessarily a MP presentation. L4 and L5 also go to that area. Top of the toes points to the sciatic nerve.
However you do say, "one herniated disc and one bulging disc." That suggests that two levels were affected, his all these bizarre signs and symptoms.
Both Meralgia Paresthetica (giving lateral thigh pain) and Maigne's syndrome (butt and groin pain) point to an upper lumbar (Femoral nerve) condition, but stuff right down to the toes, a sciatic nerve condition.
Two things come to mind: you've never seen a chiropractor, or at least you don't mention it, and secondly that you are not doing a daily regimen of gentle lower back, presumably because someone gave you inappropriate exercises.
My advice would be to make a start on some exercises before you get out of bed EVERY day, in bed, find some at Chiropractic Help, but do them judiciously and carefully to begin with.
And start a hunt for a thorough and experienced chiro in your area. Gather all your tests, ask friends and family and perhaps your GP for the name of a conscientious DC in St Paul. I'm sure there are plenty. But, find the right one...
Good luck, let us know how you get on.
The big question for me is: were the sciatic stretch tests postitive ( Slump Test and Lasegues) or were the Femoral nerve stretch tests negative. And, after all this time, it's most unlikely you could find out.