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Neurology (Expert Forum)
Possible ALS?
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.
Possible ALS?
by HuskerBrad, Sep 19, 2006 12:00AM
My right leg is getting weaker and weaker and I am scared to death that I may have ALS. My Mother and her sister both died of ALS in their late 40’s. I have had muscle twitches for as long as I can remember. I thought everyone had them. However, I began to experience ankle/calf weakness in my right leg back in April when I decided to restart my exercise regime after an extra long holiday break. The next day after trying to run a mile, my entire right leg became so stiff and sore that I could hardly move it. After about five days, a majority of the stiffness resided. I went to see my GP the first week of May. At this time I could only raise up on my toes approximately half of what was normal. My GP sent me for an MRI on my back but also referred me to a Neurologist. Since seeing my Neurologist in June, I have had 3 clean MRI’s, numerous blood tests, a nerve conduction test, an EMG and a spinal tap. Elevated protein in my CSF, progressing weakness, severe atrophy in my quads, an abnormal EMG in the affected leg only and very frequent muscle twitches led my Neurologist to a “guarded” diagnosis of CIDP. I was started on a five day regimen of IGIV the last week of July. About three weeks after my infusions, I encountered an entire week of improvement. Nothing extraordinary, but stairs and walking became easier. I was able to walk with a bent knee instead of it being locked back. My fasciculations also toned down considerably. Unfortunately this was short lived, and I have since gotten steadily worse. I just completed a second set of five IVIG infusions. My Neurologist is very confused with my results and is referring me to the Mayo clinic. He is unsure of the CIDP diagnosis but does not want to misdiagnose me with ALS as I have no upper neuron involvement that he can tell. Babinski’s sign is negative, I have no muscle spasticity, and absolutely no reflexes from my right knee down. All other reflexes are normal. I had one other period of improvement. For a few hours immediately after my spinal tap, I was able to go up stairs like I was able to a couple months before. Does ALS present without upper motor neuron damage? If one has ALS, does the individual ever have days of sustained improvement? If I have CIDP, is there more than IVIG that I can do for treatment? Should I be exercising? Thank you so much for your response.
Doctor's Answer
by CCF-Neuro-M.D.-SH, Sep 23, 2006 12:00AM
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms of right leg weakness and atrophy without sensory involvement (you did not mention numbness/tingling/pain) is an unlikely story for CIDP. I would be concerned about ALS and you deserve a comprehensive workup at a major academic center. There is a form of Motor neuron disease (ALS) called progressive muscular atrophy (PMA) that only has lower motor neuron signs (flaccid weakness, atrophy, fasiculations). Your transient improvement after the spinal tap would suggest possible normal pressure hydrocephalus (NPH). I would recommend an MRI of your Brain (you mentioned 3 MRIs, but did not mention if you had a brain) with a CINE flow study to examine for hyhydrocephalus (associated with weakness/gait problems, confusion and bladder problems).
I hope this has been helpful.
The symptoms of right leg weakness and atrophy without sensory involvement (you did not mention numbness/tingling/pain) is an unlikely story for CIDP. I would be concerned about ALS and you deserve a comprehensive workup at a major academic center. There is a form of Motor neuron disease (ALS) called progressive muscular atrophy (PMA) that only has lower motor neuron signs (flaccid weakness, atrophy, fasiculations). Your transient improvement after the spinal tap would suggest possible normal pressure hydrocephalus (NPH). I would recommend an MRI of your Brain (you mentioned 3 MRIs, but did not mention if you had a brain) with a CINE flow study to examine for hyhydrocephalus (associated with weakness/gait problems, confusion and bladder problems).
I hope this has been helpful.
Member Comments (2)
by cros12, Oct 09, 2006 12:00AM
Alright, I am severly freaked out here. I have had twitches in my muscles for a few years but very infrequently. They are usually contained to the calf or eye lid. A few weeks ago they started everywhere. I have been seeing a chiropractor and a few weeks after the first visit I started getting a tingling sensation in the heel of one of my feet (not sure if connected to chiropractor). I have also been (past 2 days) experiencing muscle fatigue in my arms. Now, the twitches have subsided a bit and the tingling in my foot is gone, but the fatigue in the muscles remain. I also feel like I am not holding onto things as well as I used to but I am unsure. My fear is that these are the developing signs of ALS. I have been told by my chiro and regular doc that this is not the case, but I cannot shake it. Any help here would be appreciated. Also, I am under an intense amount of stress right now since I work full time, attend school full time, found out my home owners insurance is dropping me, and I am now selling my house.
