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Neurology (Expert Forum)
ALS or possibly something else?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
ALS or possibly something else?
by cbw, Feb 22, 2005 12:00AM
I’m a 58 yo right-handed female physician with a 6 month history of mild left foot drop, mild left leg weakness, and increased reflexes on the left. (no pain, no sensory deficit). MRI brain/spine negative for cause; EMG positive for mild ongoing and chronic denervation in L5 myotome and mild ongoing denervation left mid-thoracic paraspinal muscles; LP normal, and negative for MS; multiple labs negative (routine and Lyme titer, phosphorus, inflammatory and autoimmune indicators, heavy metals); only lab abnormalities are Coxsackie B3 titer 1:160 and Coxsackie B4 titer 1:320.
Questions are: 1) What other studies should be done? 2) Where/how can I find a neuromuscular diagnotician who will not automatically see ALS? I’ve seen an ALS specialist, who obviously sees this as ALS. I’m still looking for an “unbiased” look. I’m willing to travel to the right expert. 3) Or does it seem worthless to look elsewhere? 4) I was just told locally that “ALS is the only thing that can cause upper and lower motor neuron findings in the same arear” but this doesn’t seem correct or ALS would be easier to diagnose – please clarify this issue. Thanks
Questions are: 1) What other studies should be done? 2) Where/how can I find a neuromuscular diagnotician who will not automatically see ALS? I’ve seen an ALS specialist, who obviously sees this as ALS. I’m still looking for an “unbiased” look. I’m willing to travel to the right expert. 3) Or does it seem worthless to look elsewhere? 4) I was just told locally that “ALS is the only thing that can cause upper and lower motor neuron findings in the same arear” but this doesn’t seem correct or ALS would be easier to diagnose – please clarify this issue. Thanks
Doctor's Answer
by CCF-Neuro-M.D.-CS, Feb 24, 2005 12:00AM
ALS is not the only thing that can cause upper and lower motor neuron findings in the same area - other textbook causes are Friedrich's ataxia, B12 deficiency, combination of a stroke and peripheral neuropathy, or combination of a spinal compression eg by a disc and a peripheral neuropathy, and diabetes related comlications.
A nationally respected ALS center should be able to give you an unbiased assessment. For example, at the Cleveland Clinic ALS Center (run by Dr. Erik Pioro, an internationally respected ALS specialist), we see a lot of "is it ALS?", and have a lot of experience in differentiating ALS from other 'mimics of ALS'
Good luck
A nationally respected ALS center should be able to give you an unbiased assessment. For example, at the Cleveland Clinic ALS Center (run by Dr. Erik Pioro, an internationally respected ALS specialist), we see a lot of "is it ALS?", and have a lot of experience in differentiating ALS from other 'mimics of ALS'
Good luck
Your symptoms and mine sound almost identical. I am also 58, female and right handed. My problems started in the summer of 2001, with painful cramping in my left foot and leg. By the end of the fall my foot had "mild foot drop" and I couldn't put my weight on it anymore. After three MRI's EMG's and an EEG, nothing has shown up in the clinical testing, although my neuro suspects a lesion on my upper motor neuron. All they can tell me is that I am being investigated for a possible neurological disorder. I am no longer able to work as the symptoms became progressive involving my three extremities, hands, fingers, and left foot and leg. To date, my right foot and leg are only periodically affected. However, my left sided symptoms started with shooting pains in the sole of my foot and that is what is also happening with my right foot and leg, so I suspect it will eventually progress to that side.
I have numbness in my hands and fingers, shooting pains that come out of nowhere and leave you gasping for breath. I told my husband that it feels akin to labour pains and you try to ride them out. I also have been left with left sided weakness and I don't have the same strength or flexibility on the left side. Most of the time I can't feel the toes on my left foot. I also have tingling in my tongue and lips and my foot or leg twitches or jumps. The pain is worse at night as the foot and leg becomes tighter and the pain turns from burning, whereas in the day it is mostly cold and numb. My reflexes are hyper and my central nervous system is very sensitive to any bright lights, fast moving objects, high pitched screams and busy little children. That means my whole quality of life is affected and I have to lead a controlled environment.
I try to do as much physical activity as possible and go to the pool for my exercises three times a week. I have recently started working in the gym and I can do stationary exercises and ride the bike, but can't even look at the treadmill as it makes me dizzy.
Do you happen to have a history of allergies? When I look back at my life I see where I must have been having slight attacks that left me limping and usually involved my feet. My ANA was slightly elevatate in my blood test, but other then that I am perfectly healthy. Whatever happened to me has left me with an awkward gait and I have problems with my balance and coordination and SOMETIMES my speeh is affected. I either stutter and repeat the first word about five times, or else I can't get the words out at all and that happens at home when I am talking to the cat.
I don't suffer from anxiety, depression or have relationship or financial problems. I, like many hundreds more, am trying to work this out and cope the best way I can. Not having a label to explain why you are like this, is probably the most difficult to deal with. With no diagnosis, you can't get any treatment and as time goes by, you get stiffer and sorer but you can't give up hope. I find these forums are very helpful in putting people in contact and just knowing there are many more people in similar situations helps. You don't feel so alone and misunderstood.
So, keep up your search and I would recommend starting a diary of your symptoms and recording any new change. At first I was so dizzy I thought I was going out of my mind. The sound from the fridge and the furnace going on would set off these internal vibrations and I would feel so unbalanced. Any sudden noise can actually make me fall down, so I have to be very careful of my walking. At least that sympton has stabilized and I seldom get feelings like that anymore. I had to cover my eyes going around corners and down hills when all this first started. I think at first my husband thought I was loony when all these weird things were happening to me.
Also, did you happen to have chicken pox, cold sores, neuralgia like pains, Bell's Palsey, any rashes or unexplained pains in your past. When I look back now, I see there times when I had bouts of unexplained pain, but nothing severe enough to disable me or to seek a doctor. When you have leg cramping and you are going through menopause, you just suspect it is all part of "the change." However, my allergies and weak immune system and a viral infection back in the summer of 2001, may have triggured this unknown neurological symptoms. Every thing else has been ruled out, Lyme, low B12, although Pernicios Anemia runs in my family as well as MS, but not my immediate family. I take B 12 orally and also by injection, just to be on the safe side.
Ask lots of questions and exhaust all possibilites and inquire into your own family medical background. I don't think I have ALS as I think my symptoms would progress much quicker and I would most likely be dead by now.
Pain is a symptom that something is not right, so even though it can't be identified doesn't mean it doesn't exist. Pain also changes who you are and what you can or can't do anymore. There are also forums out there that help you deal with chronic pain and it doesn't hurt to take a look.
Best wishes with your health problems and please post if you find the cause. My brother also had foot drop but his was from a work related injury that caused a bulging disk in his spine, which affected his peroneal nerve. So, your case may hopefully be something simple and you will be able to receive treatment and get back to normal again.
Good luck and God Bless,
The Canuck