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Symmetrical knee weakness and lower back pain?

I have posted several times in the past, fearing I had ALS and/or ALS like sx's.

As I stated before, My left knee and leg has been stiff since June, 2002.  In October, 2002, I noticed that after sitting in class for 3 hours, both of my knees were very stiff when getting up.

Two weeks ago, I woke up and both of my knees were very stiff and achy, not sharp pain.  This has not abided.  I tried to do some light aerobic activity, thinking it may help.  However, it proved to be too difficult.  I have had on and off muscle spasms above both knees since June, 2002, and bodywide since 1/02.  I have had 3 EMG's since March, 2002, though all were limited.  Right arm (3/02), Right leg (7/02), and Left arm and leg (10/02).  All were normal, with fasic in hand showing on EMG in 10/02.

I have had what I guess I would call an irritated nerve feeling in the insteps of both feet and calves since last year.  What ever is going on seems to be traveling up my legs.  I have also had lower back pain for about 1 year.

My legs and knees feel very weak and shaky after standing, even a short period of time.  I am 26 and was very active aerobically (maybe over exercised some years) from 13 to 22.

After all of this, could ALS be ruled out.  If so, could this be a back problem, or arthritis, or something else.  I am at wits end with my GP, and have only seen him once in the last 4 months, due to the fact that he seems to be a pill pusher rather than trying to find out the cause.
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Avatar universal
A related discussion, knee weakness was started.
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Avatar universal
I started having leg weakness about 5 weeks ago after a bout of lower back pain.  The weakness seemed to start in my left leg and then worked it's way up to the other leg and up to my arms.  Around that same time period (about 7 days after my symptoms started), I developed body wide fasciculations and a lot of sharp pains in my legs and arms.  This has gone on , for the most part, for 5 weeks.  I have also developed knee weakness and some burning when I stand up, even for short periods of time.  I had an MRI done of my lower lumbar, it was negative with the exception of a bulging disk and some disk degeneration.  It also mentioned something about decreased signal.  No disk herniation.  I also had a neurological exam and everything was normal.  EMG of both legs, normal.  The symptoms seem to be getting worse, what could this be?  I have never been this frightened in my life!
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Avatar universal
Dear Sunnygal,

I just want to add that an EMG will only detect motor nerve damage to the peripheral nerves, and will not see a problem with the descending nerve fibers within your spinal cord or in your brain.  I have mild-moderate nerve damage to the motor nerves within my spinal cord, as a result of complications from a spinal tumor.  I'm not saying you have a spinal tumor, but there are many other conditions that can affect the upper motor neurons in your cord and brain.  In the early stages, people can have a hard time sorting this out.  What I noticed when my nerve injuries happened was:

1.  Exhausted leg and thigh muscles when doing absolutely normal things, like standing in the shower, standing while doing the dishes.

2.  A floppiness/instability of the joints supported by the affected muscle groups: the knees became wobbly when my thighs became weak, my hip started "popping" when my buttocks muscles became weak, my ankles started "crunching" when my calf muscles became weak.

3.  Lots of fasciculations in the early stages of a new motor nerve injury.

4.  Significant muscle stiffness/muscle tightness, with the tendons being pulled extremely tight.

5.  Within a week of a new weakness starting, I would start to have joint pain in the muscle normally supported by those muscles, because of the increased wobbliness causing unnatural pressures and grinding within the joint.  I now use soft knee braces every day to prevent this pain.

6.  Muscle atrophy: this is less obvious than it otherwise might be, because it's the same on both sides (meaning, I no longer have a normal comparison).  I've lost two inches from my hips and gone down a pants size on the bottom, despite remaining at the same weight and doing the same amount of physical therapy, with all my upper body measurements remaining the same.  It's easiest for other people to see the wasting in my buttocks and feet.

My understanding is that MS can also cause the same pattern of motor nerve damage as what I have.  I wouldn't want to say whether there's a possibility you could have MS, but there are tests that can be done to get closer to figuring that out.  I do know that if I were in your shoes, I would want to be evaluated by a neurologist.  I'm not trying to scare you, but at the same time, my own experience is what it is.  It can be very hard for doctors to pick up on the early signs of problems with the motor neurons in the spinal cord, unless they're used to seeing these patients a lot.  I'm speaking only here about neurological causes of these symptoms, but don't mean to imply that it couldn't be something else.  

Good luck,
Annika
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Avatar universal
Dear Sunnygal,

I'm sorry, I missed the note at the end of your original post where you mentioned that you had had low back pain for a year.  Have you had an MRI of your lumbar and thoracic spine?  I know you mentioned the open cervical spine MRI, but if the nervous system is going to be evaluated for possible causes of your symptoms, one also needs to think about the lower spinal cord (seen on thoracic MRI) and the low back (lumbar MRI).  

Also, when you go to see your doctor or neurologist, make sure beforehand that you've thought about any other symptoms, even if they seem like they may not be related.  In particular, have you had any changes in your bowel, bladder, or sexual function?  Even if you have something that has already been diagnosed as something else, make sure you bring up these symptoms again.  Getting the whole picture is very important.

Good luck,
Annika
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Avatar universal
Still doesn't sound like the typical case of ALS, which is characterized by progressive weakness, rather than joint pain and stiffness. Your multiple EMGs which have been normal should be somewhat reassuring that it's not likely to be ALS that's causing your symptoms. That's not to say that you're imagining your symptoms. But it may be that you are experiencing arthritis or some kind of autoimmune or inflammatory disease as you suggest in your post. If you do not seem to be getting anywhere with your current physician, consider switching to another internist who can get a fresh look at you. GOod luck.
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Avatar universal
Sorry, I would also like to add that I have been having some severe tongue issues.  Began in Feb 2002, thought at the time from albuterol, but, have NOT taken the albuterol in 2 months, issues still here.

My tongue feels numb on the right side, and I often, but not always, have a difficult time speaking.  I have also seen my tongue twitch.  Any correlation?  I am not up for having a tongue EMG, any other suggestions?  Note:  my ENT has reported normal pharyngeal function.  Is MS a possibility?  I had an Open C-Spine MRI in May, 2002, limited due to motion artifact.
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