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Southerngirl

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Jan 19, 2012
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Learn about ALS
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Uni
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AL
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Chandler
Hello friends. I am new to the forums. I've been back and forth a couple times to read other peoples stories. I am in the middle of a bunch of tests but was hoping to get some feedback from people who've been through this before.

Female. 32. Tests for thyroid, lyme disease, b12, vitamin ranges, blood, metabolic, copper, all normal. No sugar problems or diabetic neuropathy. My b6 is a bit high; vit d was low. My total protein level was slightly low.

-I show obvious signs of LMN and UMN.
-Atrophy in right calve. Weakness and wasting in the legs.
-Wasting and sensory loss in glut (but muscles as well).
-General achiness in body, though no visible weakness/wasting in upper body.
-Positive Babinski sign.
-Fatigibility.
-Contain pain in both legs (upper portion).
-Drop foot.
-Cognitively I seem fine.
-Spastic reflex. Hyperreflex on one foot (physical therapist mention).
-Difficulty walking short distances, long distances are impossible. Stairs and ramps are nearly impossible.
-Sensory changes. Can't feel my feet at all. Have weird nerve sensations below the waist. Someone can rub my back and I'd feel sensations in my legs as well. It's just odd.
-Though atrophied when I "work" the muscle I can feel some pain, generally speaking. Legs are so weak it's hard to say for sure. Get weird feelings, pin pricks. Sensations are very odd. Muscles contract at random, though I'm not sure what to say concerning fasciliations. I had them at one time, when it started back in 2008, but I don't noticed any movement now. May just be my ignorance, not sure.

Symtoms are slowly progressive. Walking now is a complete chore, but I'm lucky to still be walking. I do have better and worse days, I call them flares. Though even on better days, not sure that much legs ever work much better.

-Started are a pinpoint pain in right leg in 2006 that radiated outward and moved to other legs.
-2008 brain scan/upper cervical mri came out clear.
-2008 lower mri showed a very small buldge at the L2. Quoting doc: "Mild neuroforaminal naroowing at multiple levels and more noticeable at the L2-L3."
-2008 EMG. Quoting doc: "EMG study showed finding consistent with a right lumbosacral polyradiculopathy with active denervation in the L2 muscles."
-2012 Brain scan/upper cervical MRI. Clean.

Doc has me scheduled for another lower cervical MRI next. Then he said Spinal Tap after that. I was just hoping to get some feedback from someone wiser than myself who's been through this before.

You are all an incredibly brave, inspiring group of people. Thank you.
 
Meant to add, weakness and visible atrophy of calf muscle started in 2008. Hence why I had the EMG and MRI. EMG was in right leg (my weaker leg) as I couldn't afford to do both legs as the time.
 
Southern girl, you have too many sensory issues for this to be ALS or any other MND. You will just have to keep going with the testing and hopefully your Drs can work out what's causing it. You clearly have a radiculopathy which can cause all of your symptoms. Forget about ALS. Hopefully you can get some treatment.
 
If your weakness and atrophy started in your leg in 2008 and an EMG done at that time didn't show signs of ALS, it's very unlikely that the progression of those symptoms is being caused by any MND. It's most likely being caused by whatever caused it in 2008.

What LMN and UMN symptoms do you think you have?
 
Hello Southerngirl

It sounds as if your symptoms are relegated to your legs and in particular your right leg. This seems to have been confirmed by your EMG and also by the MRI of your lumbosacral region and thus the tentative diagnosis of a right lumbosacral polyradiculopathy. Your LMN symptoms (weakness and atrophy) would therefore be explained from compressing the spinal nerves and your UMN symptoms (presence of a Babinski reflex and spasticity) from compressing the spinal cord.

Are you having any symptoms in your left leg . . . other than pain? Are you having any symptoms in your arms?

Given your story and what you have shared, it doesn't sound ALS and sure is pointing in the direction of disk and/or peripheral nerve issues. Is your physician not convinced?
 
Alyood, Trfogey, and Wright. Thank you for your replies and thoughts. :)

Weakness: I do have weakness in the left leg as well as right. The left leg has atrophied worse than the left, but there is obvious weakness of muscle tissue in both legs. They have "thinned" out, but have some slight muscle tone. The right calf looks atrophied, there is some slight muscle movement. It doesn't lift when I walk, more of a dragging with that limb. They have lost a lot of bulk and that has been gradual and slowly progressive. I have very little balance. There is no pain in the calves, only the muscles of the upper leg.

Sensation: The sensory issues are apparent in the legs, butt, and feet. Heat and cold. I can burn myself easily with my laptop charger if I'm not careful, since I don't feel pain well in upper legs or lower legs. Or on my feet. Outside of below the waist sensory is ok as far as I can tell.

Fatigue and Movement in Arms: I have all over weakness, more like living with the flu full time. I just am fatigued and have trouble doing simple tasks like getting chores done and doing things without getting tired. Stress knocks me out and will instantly physically make me weak all over. So although I wouldn't note any weakness in arms or anything, it's an all over weakness. Doing things just make me tired all over. However, as far as gripping and moving and function in the arms, I don't notice anything abnormal.
I've had fatigue since I had my daughter in 2000. Had an epidural go bad, preeclampsia, emergency c-section. Before that I was not fatigued in general. However, didn't notice specific pains until 2005-2006. Treated then for pain in the legs and Restless Leg type symtoms.

UMN/LMN: It was the physical therapist who mentioned me having signs for both lower and upper. She probably spent a good 30-45 min running reflex tests and looking me over. Said I was showing responses consistent for both upper and lower. So, I am more or less assuming she's right. But based on my own observations for UMN I have muscle weakness, decreased motor control with fine movements or spastic movement, positive babinski sign. For lower, decreased tone and strength, atrophy.

Fasciculations: I don't currently have any noticeable fasciculations. My 2008 doctor noted no muscle atrophy or fasciculation in his notes. I believe I've had them before, but not something I notice now. I get these odd sensations. In my left leg right now (just finished my PT exercises) I feel a pinprick, cold, crawling like sensation in the left thigh muscle. I'm not sure if its muscle movement, I don't feel anything, so maybe just odd sensory issue. It's possible I may have mistake the fasciculations for odd sensations. My legs did and do still "move" in odd jerky motions when I sleep.
 
Wright, I'm not sure what the neurologist thinks. I gave him a copy of the first and second neuro letters. The first neuro letter is the one with all the info regarding EMG and Lumbar MRI. The second nuero I only saw once from Kirklin in Birmingham, she noted: "cervicothoracic myelopathy with possible cns demyelination with right leg weakness, sensory changes, and right upgoing toe." Then ordered the first brain scan and upper cervical (normal). But she switched offices right after she saw me. So onto the third neuro.
I asked him what he thought. He said he could understand why second neuro made the assessment she made but said it in a way that he thought she was wrong. I probed him a bit, he mentioned possible vitamin deficiency or genetic condition, but didn't list anything specific. He has ordered the Lumbar MRI for next visit though, so maybe something more telling then. :3
 
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