Discussions By Condition: I cannot get a diagnosis.

Serious Muscle Atrophy in left thigh and no diagnosis

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: jarambar
  • September 28, 2007
  • 11:44 PM

I am posting this message because my 18 year old son has a muscle atrophy in his left thigh and the doctors don't know what is causing it. He has had 4 MRIs, and a nerve conduction study and the only thing they have said is that his femoral nerve is not functioning fully. The problem is that they have no idea why. He started back with the physical therapist today and is going to see the PT 3 days a week until it is time for his appointment with the neuromuscular specialist that we have to drive 6 hours to see. I don't mind the drive of course but it has become very frustrating that I have not had one doctor (neurologist and neurosurgeons) tell me anything except "I don't know." Literally!!! The nerosurgeon he was seeing even said he didn't think PT would do any good. I thought it would be better than not doing anything.

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11 Replies:

  • Hello:I like to know if you found any answer to your inquiry. I am a female who suffers from the same problem for the past 20 years (my right thigh). I noticed the atrophy when I was 18 years old too! I have seen a few doctors in the past but nobody seemed to know what was wrong with me, the last time I met with a doctor was about six years ago, he guessed that it could be the result of old polio! Anyway I really wish that I could find out what has caused this atrophy and if there is any medical help for it.I truly appreciate if you share with me any new findings.
    screamloud 2 Replies Flag this Response
  • We still do not have a diagnosis. My son is now 20 years old and the atrophy has not changed much over the past 2 years. He lost his medical insurance when he was 19 because he was not in school anymore and my family plan would no longer cover him. He has a job now where he can get group health insurance in about 1 month so he can hopefully return to the doctor. No one would cover him under an individual plan because of his leg. You mentioned that one doctor said you might have had Polio. We had a physical therapist tell us the same thing! I thought Polio no longer existed!! We did go to the specialist and she did a lot of special blood tests and never found anything.Good luck! If anything changes when he returns to the doctor I will let you know.
    jarambar 1 Replies Flag this Response
  • I have been really sick past few days and didn’t have a chance to thank you for your quick reply: Thank you so very much for your respond :)In regard to your dilemma, I think that even with pre-existing conditions you can still get insurance for your son but have to wait sometime pass (usually about six month) to pursue any medical help related to that condition. Not to mention that insurance companies try not to pay for anything anyway. In the future I will let you know too if I find anything substantial about my condition, which at the surface looks the same with your son’s. Sincerely, m :)
    screamloud 2 Replies Flag this Response
  • My son (age 21) by marriage has had his left calf disappear over the past two years. He recently had a nerve test and it came back as normal. He tests normal for everything so far in fact (he has had an MRI). I am going to suggest he get his CK levels tested and see if it could be Miyoshi myopathy.Interestingly, he plays soccer and has no problems with strength or coordination. But it is dramatically noticeable. It even appears to be trying to regenerate itself (my determination) and build up in the areas where the "damage" or possible necropathy occurred. I guess this is due to his soccer playing. The body amazes me in how it will compensate.Anyone's thoughts on the topic are appreciated.
    Anonymous 42789 Replies
    • October 13, 2009
    • 02:37 PM
    • 0
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  • Ask your doctors - specifically a neurologist - about TCS: tethered cord syndrome. I started having numbness/loss of sensitivity in my left foot, and along the side of my lower and upper left leg which manifested itself over a few years. After seeing a neurologist, I was told I had TCS which means there is a small fatty tissue putting pressure on the nerve endings which control the lower extremities, which resulted in the muscle atrophy in my calf and thigh muscles. My neurologist says those are mild symptoms, it could be worse such as loss of bladder control and the sexual organs. I am currently waiting to see if it will need to be removed based on CAT and MRI results - but it's definitely something you should ask your doctor about. I had no idea it existed until I went through several doctors.
    Anonymous 42789 Replies
    • February 16, 2011
    • 02:27 PM
    • 0
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  • Hello jarambar,I was wondering if you got any result for your effort in finding the reason for your son's issue?I have had the same exact issue for the past 40 years. I have gone to a lot of doctors and eventually quit about 20 years ago.My left thigh is tremendously thinner than my right thigh and I have been suffering form weakness in the left leg sport activities, although it is not noticeable in walking.Recently I started to go to the Jim three times per week and work with the left leg which helped a little bit but did not cure the problem completely. Please let me know if you found any treatment.Thanks
    Anonymous 42789 Replies Flag this Response
  • Hi,Recently i saw the change in my right calf.I was surprised and went to a ortho Dr.He advised me to take MRI and CT scan and blood test(HLA-B27 and CPT).The blood test results are negative but the MRI and CT scans shows a inflamation in the hip and spine joint.He said it may be seronegative spondlyarthrosis and prescribed medicines for that.I have started taking medicines from yesterday.I will update if i see any changes.Also please tell ur experiences regarding the same
    Anonymous 42789 Replies Flag this Response
  • Hi,My left thigh is thinner than the right thigh and its from birth. but now its more noticeable, i am 26 now and cant wear short skirts n tights. i would love to know is there any treatment for this or any surgery. and even i don't know what disease is this? old people saying its b,coz of polio i really don't know anything. which doctor i should go for the treatment. It 'll be very helpful if anyone can reply.thanks!!
    Anonymous 42789 Replies Flag this Response
  • Hello,I noticed a couple of years ago that my left calf muscle had deteriorated on the inside of my leg. I spoke with the doctor about it and he said if you can function then continue on. Clearly, if I could get an answer or solution that would be great. I also noticed on my lower left leg dryness. It almost feels like there's a loss of circulation. Which made me think diabetes? I don't know. I'd say definitely loss in circulation. The weird thing is that the calf muscle is only partially gone. So, could be nerve damage as well or who knows what. Thanks
    Anonymous 42789 Replies Flag this Response
  • Hi, i am in the same postition as you i am 27 and cannot wear shorts or skirts as my right thigh is significantly thinner than my left. I was diagnosed with SMA Spinal Muscular Atrophy 8 years ago as i noticed the wastage first then.Although since my doctor is still investigating with MRI scans and nerve conduction studies as sometimes i see him and there seems a glimmer of hope that its not actually SMA, as all the cases i read on it seem to be the end of the scale and totally scary whereas over all i am healthy and it hasnt deteriated in the last 8 years.I am struggling to get life insurance though and i have a husband & 3 kids so am desperate to get that sorted!hope you are ok :)
    Anonymous 42789 Replies
    • August 22, 2011
    • 03:20 PM
    • 0
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  • Hello everyone,I am 76 yo and have experienced lower back nerve damage several times in the last 35 yrs. About 1 yr ago I had a recurrence of this pain which my GP manipulated, gave me relief for 2-3 weeks. I then developed a pain in the upper Right Hand Glutes which made it difficult to walk for 3-4 days. This pain got so bad I just had to see a GP and physio and got some treatment from both. Physio concluded pinched nerve ( again ), the GP arranged pain killers and confirmed that my blood circulation was OK. That night I had excruciating pain in my RH hams, thigh, shin bone ( ?? ) and pins and needles in the inner part of the ankle. This accute pain lasted for about 25 mins and then reduced to a point where I could sleep.Today I can report some improvement in the RH leg. GP says it will take 1-2 yrs to come good. The main thing I noticed is a strange sensation in the central part of the hamstrings. Any mild pressure in this area is a distracting annoyance, eg, driving the car, sitting at my PC or TV. I have to lift my knee to ease the irritation. I can feel it right now as I type this message and have just lifted my knee to ease it, very distracting!! This irritation I have in fact experienced for approx 2.5 yrs, which correllates with my last angiogram. My Cardio says it wont be due to his insertion of the angiogram "plug" he puts into the femoral artery which is very close to the femoral nerve.That is the history behind my loss of muscle tissue in my RH hams. It appears that only one of the muscles in the "ham" group is affected. I have only noticed the difference this week after drying myself from the shower.The difference in circumference is about 35mm measured at mid thigh. Perhaps a minor thing at this stage but it has got me concerned. I have been exercising for heart health for 11-12 years and I am very fit for my age. I found some good simple exercises to strengthen my lower back and that has made me feel a lot more confident. I do those exercises 5 times a week as part of my regular workout regime.I will search out and find exercises that may help my thinning RH hams.Sorry. There is nothing in my post that explain "why" to the above questions. Maybe my exercise approach will help some folks here?
    fairwind 1 Replies
    • December 16, 2013
    • 06:04 AM
    • 0
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