Aa
Asymetrical progressive weakness
Doctor,
I have been seeing a neuroloist at the University of Michigan Ann Arbor, who is stumped
My symptoms began a year and a half ago when the 4th and 5th digits of my right hand got "stuck" gripping a knife. Since then, my symptoms have progressed to include severe weakness and atrophy of all the intrinsic muscles of the right hand, with some weakness and atrophy in the forearm. (I have one lb of pinch strength in my right hand, compared to 25+ lbs in the left.) The extensors are not as severely affected (my pinky is the only finger not strong enough to type with)
Attempts at diagnosis originally focused on the right arm/shoulder, with EMG's, MRI's and X-rays ruling out slipped discs, carpal tunnel (there was no significant nerve velocity change across my elbow) tumors, etc.
On July 3rd, my 1st appointment at U of M, the physical exam and EMG confirmed early symptoms in my left anterior tibialis. Which led us to consider more systemic problems. I have since had numerous tests, including B-12, folate, GM-1 antibody, Survival Motor Neuron Gene, CK, C-reactive protein, Parathyroid, and numerous others. These tests were from blood samples, and a lumbar puncture. So far, everything has come back normal.
With the exception of the weakness (and a little healthy fear) I feel great. I've lost a little weight, but I've been working at it and it's been slow. I'm in no pain, but I do have occasional numbness, very rarely a little twitching, and occasionally if I extend or contract certain muscles in my feet and legs (primarily the left leg) I will experience a "stuck" feeling comparable to that which was my first symptom in my right hand.
I get the impression that I am not fitting into any category, because my symptoms and clinical results don't track. My symptoms look to me just like multi-focal motor neuropathy, but my EMG's, according to my doctor, look more like Motor Neuron disease. The lack of pain also seems significant.
My neurologist at U of M said the only things we can do at this point are either wait for something new to develop (my next appointment is in December) or get a second opinion. I would prefer not to wait--who knows when the muscles of my hand will become to far gone to recover even if we find a treatment.
I would appreciate any input,
Pam
I have been seeing a neuroloist at the University of Michigan Ann Arbor, who is stumped
My symptoms began a year and a half ago when the 4th and 5th digits of my right hand got "stuck" gripping a knife. Since then, my symptoms have progressed to include severe weakness and atrophy of all the intrinsic muscles of the right hand, with some weakness and atrophy in the forearm. (I have one lb of pinch strength in my right hand, compared to 25+ lbs in the left.) The extensors are not as severely affected (my pinky is the only finger not strong enough to type with)
Attempts at diagnosis originally focused on the right arm/shoulder, with EMG's, MRI's and X-rays ruling out slipped discs, carpal tunnel (there was no significant nerve velocity change across my elbow) tumors, etc.
On July 3rd, my 1st appointment at U of M, the physical exam and EMG confirmed early symptoms in my left anterior tibialis. Which led us to consider more systemic problems. I have since had numerous tests, including B-12, folate, GM-1 antibody, Survival Motor Neuron Gene, CK, C-reactive protein, Parathyroid, and numerous others. These tests were from blood samples, and a lumbar puncture. So far, everything has come back normal.
With the exception of the weakness (and a little healthy fear) I feel great. I've lost a little weight, but I've been working at it and it's been slow. I'm in no pain, but I do have occasional numbness, very rarely a little twitching, and occasionally if I extend or contract certain muscles in my feet and legs (primarily the left leg) I will experience a "stuck" feeling comparable to that which was my first symptom in my right hand.
I get the impression that I am not fitting into any category, because my symptoms and clinical results don't track. My symptoms look to me just like multi-focal motor neuropathy, but my EMG's, according to my doctor, look more like Motor Neuron disease. The lack of pain also seems significant.
My neurologist at U of M said the only things we can do at this point are either wait for something new to develop (my next appointment is in December) or get a second opinion. I would prefer not to wait--who knows when the muscles of my hand will become to far gone to recover even if we find a treatment.
I would appreciate any input,
Pam
Dear Doc, we love you to pieces, but please don't be so defensive. Right there in the first sentence, PAM says her Dr. is stumped. No one is trying to attack you.
You are doing a great job.
You are doing a great job.
I don't think Pam was implying that you said that - she had said her dr was stumped in her original message and I think was just trying to clarify that to you so you didn't think she was putting her dr down in any way. At least that is what I got out of it. You provide such a great forum here....and allow us to ask questions we can't normally ask because you always think of them AFTER you leave the dr's office. I would hope no one ever offends you on this forum. I also want to mention that I always think it is funny when you say you are sorry you aren't much help or that you can't offer any more help - the help you provide on this forum is invaluable....we all know you can't diagnose without seeing a patient, but you always give suggestions of what we should ask our doctors, or what tests we can request, or just comfort in that it isn't quite as serious as we might fear. Thank you!
Dear Pam:
I did not say your neurologist was "stumped". I said I was sorry that I wasn't much help. I said nothing about your neurologist.
CCF Neuro MD
I did not say your neurologist was "stumped". I said I was sorry that I wasn't much help. I said nothing about your neurologist.
CCF Neuro MD
Just a quick addition: I have no conduction block and no sensory loss. I do have some deterioration in reflexes.
Additional tests whech have been run: liver and kidney function, blood sugar, hexasimitidase-A, (I know I spelled that wrong!) CBC, Chem panel (more than a chem 7, but I don't remember if it was a chem 13, or 17, or something like that)
And when I went back and looked at the message, I realized that I didn't like the statement about my neurologist being stumped. He has been great, and from everything I have read, he is doing all the right things. We just haven't figured it out yet, and believe that getting more minds involved can't hurt.
Pam
Additional tests whech have been run: liver and kidney function, blood sugar, hexasimitidase-A, (I know I spelled that wrong!) CBC, Chem panel (more than a chem 7, but I don't remember if it was a chem 13, or 17, or something like that)
And when I went back and looked at the message, I realized that I didn't like the statement about my neurologist being stumped. He has been great, and from everything I have read, he is doing all the right things. We just haven't figured it out yet, and believe that getting more minds involved can't hurt.
Pam
Dear Pam:
Sorry to hear about your hand. I would agree that your describing a motor neuron disease-motor changes without sensory symptoms. The normal EMG is alittle puzzling but it does rule out things like Issac's, ALS, typical motor neuron disease. But, has the possibility of a muscle biopsy been brouched with you, This might help in the diagnosis. If there is a family history of motor neuron disease, this would also point a good direction to take (I bet this has already been gone over). Myotonic dystrophy has also been looked into (I would imagine) and the family history would be positive in many. There are a few families with muscle wasting with mitochondrial diseases and this is a possibility (unlikely but a thought). I think a muscle biospy would be an important next step. Sorry, that I'm not much help.
Sincerely,
CCF Neuro MD
Sorry to hear about your hand. I would agree that your describing a motor neuron disease-motor changes without sensory symptoms. The normal EMG is alittle puzzling but it does rule out things like Issac's, ALS, typical motor neuron disease. But, has the possibility of a muscle biopsy been brouched with you, This might help in the diagnosis. If there is a family history of motor neuron disease, this would also point a good direction to take (I bet this has already been gone over). Myotonic dystrophy has also been looked into (I would imagine) and the family history would be positive in many. There are a few families with muscle wasting with mitochondrial diseases and this is a possibility (unlikely but a thought). I think a muscle biospy would be an important next step. Sorry, that I'm not much help.
Sincerely,
CCF Neuro MD
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