I would be very appreciative for any feedback or direction to other resources, boards, or guesses at my condition. It appears very unique, at least no doctors, physical therapist, or web research is turning up anything.
It appears one specific muscle in my upper left leg is becoming EXTREMELY weak and getting worse. I would call this my 'Quad' on the front of my leg. It is definitely the muscle which when contracted 'pulls' or 'lifts' your lower leg (below the kneecap) forward.
I say this because when I walk my left leg will sometimes just 'buckle' and I will fall to the ground (very embarrassing). If I sit on a chair or bed I can lift and straighten my right leg so it is horizontal to the floor (so my foot is maybe 18" off the ground). But I can not lift my left foot more than 3-4 inches off the ground and I struggle to hold even that. This muscles is EXTREMELY weak like a baby (it sucks).
When I climb stairs, and this is getting very bad, I can lift my weight w/ my right leg/foot as I go up, but struggle when taking a step w/ my left foot and having to lift my weight. I need to use the railing to help.
This has been going on many years, maybe 5-10 I have noticed the left being more weak but it is getting worse quickly. There have been no specific injuries to start this, I have always noticed my left being weaker and think it may have started earlier.
The doctors did some MRI's but not a lot. They sent me to physical therapy where they said I have become a master at using my hamstrings to 'push' my leg forward rather than my Quad muscles to contract and 'pull' my leg forward when I walk. I can not run. People notice I walk w/ a weird kind of limp sometimes.
I think it is some type of muscle degenerative disease but don't know what. I think the muscle has atrophied to almost nothing but physical therapy is not working until some problem gets fixed (I think). I bought an ellipical machine for 9 months using it regularly but zero difference in my left leg (I have lost weight, eat healthier and trying just no change in the leg).
My lower limbs (ie., legs) have always been skinny for my body. I am 6'4" tall, weight about 190lb right now. My upper body strength is ok, I can lift things, carry doors, wood, roofing tiles, bags of concrete ok (not super strong but I'm ok). But when I walk w/ these items I feel my left leg may collapse out from under me any second.
I am 46 years old now.
I am willing to fly from Hawaii to the Mainland if there is a good place to get a full evaluation. I am trying to schedule a muscle biopsy soon. I went to a neurologist here who did some electrical tests and said the muscles responded to electrical pulses but I'm not sure that electrical signal is reaching my quad from my brain.
What makes it so unusual is it is so focused on that one muscle (the quad). Doctors have said if is MS it would affect more muscles.
Any help, thoughts, suggestions would be very appreciated.
I would highly suggest seeing a doctor to run more test for MS, my fiance has MS and he started with leg weakness in one leg. What gave it away for him he had MRI and spinal tap done and both showed lesions on his brain and spinal cord. That was 10 yrs ago, now he has many symptoms of MS. Has any doctor done any test on your for muscular dystrophy or fibromyalgia?
The Following User Says Thank You to tineewolf For This Useful Post: pflash999 (11-27-2012)
I would explore more neuro tests, and skip the muscle biopsy for now. A recent MRI of brain and spinal cord should be done. You are at age where even a herniated disc could be causing the problem, but that normally involves pain. If the problem is in the muscle you should have elevated CK enzymes on blood. Have those been tested? Did they do a nerve conduction test along with the EMG? The EMG sounds like it was normal so I think a muscle biopsy will be normal unless CK is elevated. There are uncommon things, like arterio-venous malformations in the spinal area that can wrap around the nerve and kind of strangle it. Is there pain in that leg or your back or buttock? Reflexes normal? From what you've said thus far, it sounds more neurological than muscular. You might consider going to the Scripps Clinic in La Joya Calif if you can't get answers where you are.
The Following User Says Thank You to ladybud For This Useful Post: pflash999 (11-27-2012)
I thank you both very much for taking the time to read my post and provide some comments and suggestions. It is very very much appreciated.
I plan to do the biopsy just because it is now scheduled and will at least provide an answer to one question one way or another. It is frustrating as the doctors just seem to shuttle you from one location to another trying random things based on 'their' work area. Nobody seems to try and pull the different tests/areas into one clear picture for an individual. I will seek further neurologist specialists with the biopsy results.
I will check on the MS tests that have been done but think they were normal. Thank you for that suggestions and comment on your fiance's experience. I remember being very young a doctor said I had MS (scared me a lot and I may have been 8 or 10), but then next doctor said no my spine was fine. I think my body and spine curve are not 100% normal but maybe only slightly off. I always had good coordination etc but slowly degenerating with this leg weakness thing. I will followup with this. I do have a 'sunken chest' and very very small calf muscles for somebody 6'4".
Regarding Fibromyalgia I have always had a high threshold for pain and not tender in any of the specific spots listed as common. The only 'symptom' I can see in common with Fibromyalfia (from various wiki sites) is limb weakness. I am not sure how they can specifically test for Fibromyalfia but will ask, I think they will say although I have a sever limb weakness I don't have other symptoms so I don't have that (my guess).
Thank you for your suggestions to explore more neuro tests. I was interested in what 'areas' people think I should look for this problem or specialists in (if I can't get a full team to do an overall evaluation). The EMG tests were normal and if the biopsy is normal then I can force more tests in other areas. I am very familiar w/ La Jolla Scripps Clinic and am willing to travel to specialist on the mainland to hopefully evaulate the 'overall' situation as a team. But I was told maybe USF is a potential place if this is a neurology thing? I wish I had followed this up more when I actually lived near Scripps. I can travel but don't have unlimited funds and worried about which part insurance will cover but I am willing to spend what I have of course.
I am not clear if CK enzymes are being measured in the blood in my quarterly tests, but now I can ask
I do not regularly have any back pain and when I do it is more muscle spasm related after I work (and maybe pull a muscle) than from the 'disc' area. Regardless I am VERY interested in this arterio-venous malformations potentially wrapping around a nerve. That may be along the lines of what I am thinking has been happening over the years.
Thank you both for your comments, again I can not tell you how appreciative I am of you taking the time to type your feedback to my issue.
The AV malformations are usually congenital, but they typically grow slowly in size over time, causing gradual worsening of symptoms as the nerves get compressed by the growth. It is like a cluster of blood vessels all tangled together, like a tight ball of spaghetti that grows and chokes off the nerve. You might find researching that interesting.