SF Bay Area Neurologist Recommendations?
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CoachMeg
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Our neurologist is an ALS specialist with Kaiser Permanente. You do need to be a member of Kaiser to see him. His name is Dr. Will North.
There is an ALS Clinic at UCSF, I believe. It is the Forbes Norris MDA/ALS Research and Treatment Center. You can Google the details.
Good luck!
Love and light
Meg
There is an ALS Clinic at UCSF, I believe. It is the Forbes Norris MDA/ALS Research and Treatment Center. You can Google the details.
Good luck!
Love and light
Meg
sadiemae
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Call Forbes Norris ALS Center 415-600-3604 Dr Katz and Dr Miller are great. They are also one of the top research centers. Located at California Pacific Medical Center.
trfogey
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Sadiemae's husband is a patient at Forbes Norris.
And, given the fact that Forbes Norris is one of the leading neuromuscular disease research centers in this country, if not the world, it's pretty safe to assume that they have at least one, if not several EMG experts on staff.
meli
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Hi Sadiemae,
I hope you don't mind me asking what your experience was with this center, are both Katz and Miller equally qualified in this area of diseases and EMG testing. Please don't take my question in the wrong way, I just need to feel some assurance that if I go there, they will be able to alleviated my worries, that they can tell a person for certain that they don't have anything or do with certainty if they do an EMG on me. Thank you and thank you again, and I'm sorry...
I hope you don't mind me asking what your experience was with this center, are both Katz and Miller equally qualified in this area of diseases and EMG testing. Please don't take my question in the wrong way, I just need to feel some assurance that if I go there, they will be able to alleviated my worries, that they can tell a person for certain that they don't have anything or do with certainty if they do an EMG on me. Thank you and thank you again, and I'm sorry...
Katie C
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Both Forbes-Norris and UCSF are certified ALS centers. They are on the cutting edge of research and treatment for MND's. My husband was treated by Dr North at Hayward Kaiser, and a kinder, more understanding neuro you won't find. He had his "second opinion" appointment with Dr Catherine Loemen-Hoerth at UCSF. I fear the kind of assurances you are looking for simply don't exist with this disease. ALS is diagnosed by ruling out everything else. There's no magic formula. I'm sorry if that sounds harsh, but it's the reality.
trfogey
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No, they aren't worthless. They simply show what they show. Your first two doctors called them normal. That finding takes some things out of the very large pile of possible conditions that could be causing your symptoms. It doesn't mean that nothing's wrong with you. It just means that you don't have certain conditions that can be detected by an EMG.
The EMG is just one of many tests that neuros use. It's not the only test and it's not the primary test in all cases. We talk about it a lot about it around here because lower motor neuron disease happens to be one of the conditions that is detected easily and early by the EMG, and you have to have both upper and lower motor neuron disease to be diagnosed with ALS.
There are literally thousands of conditions that can't be detected by EMG. Whatever you have that is causing your symptoms falls in the "EMG can't detect" group.
meli
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Hi Sadiemae-
I guess I'm afraid that the EMGS were wrong, that they didn't test enough spots/muscles, their skill doing/interpreting, such stuff, also that I have this weakness and tightness in my limbs, and twitching of 6 months, and am so afraid with no answers. I've also have fluctuating swallowing problems for the past 10 months, my tongue feels weird, jaw tightness, and facial tightness. Both neuros say I don't have ALS, I want to believe them but I want to know what's wrong. Would the EMGS also show other lower motor neuron diseases? Please, I need support from someone who has been there and knows about EMG testing and their reliability, I don't mean to be a pain, I just scared...
Do the neuros need to be neurophysiology certified, even if they are at an ALS center? I saw that neither Miller nor Katz are neurophysiology certified, I just want to know from your experience that they are skilled with EMG/diagnosis despite not having that badge? I'm just so scared....
anyone-
I have not been tested for MG, and although the doctors flat out refused to test me for this( the 2 blood tests), I think that I have good reason to ask for them. I've read that MG presents itself from mild to extreme, and they wouldn't do it cause I wasn't showing something extreme for the. My eyes don't droop to the point of viability, but I have the uncoordinated eye sensation that comes on, kind of heavy eyes, like they are not moving right. Then it goes away after a while...any person familiar with MG, I would appreciate your comments.
I guess I'm afraid that the EMGS were wrong, that they didn't test enough spots/muscles, their skill doing/interpreting, such stuff, also that I have this weakness and tightness in my limbs, and twitching of 6 months, and am so afraid with no answers. I've also have fluctuating swallowing problems for the past 10 months, my tongue feels weird, jaw tightness, and facial tightness. Both neuros say I don't have ALS, I want to believe them but I want to know what's wrong. Would the EMGS also show other lower motor neuron diseases? Please, I need support from someone who has been there and knows about EMG testing and their reliability, I don't mean to be a pain, I just scared...
Do the neuros need to be neurophysiology certified, even if they are at an ALS center? I saw that neither Miller nor Katz are neurophysiology certified, I just want to know from your experience that they are skilled with EMG/diagnosis despite not having that badge? I'm just so scared....anyone-
I have not been tested for MG, and although the doctors flat out refused to test me for this( the 2 blood tests), I think that I have good reason to ask for them. I've read that MG presents itself from mild to extreme, and they wouldn't do it cause I wasn't showing something extreme for the. My eyes don't droop to the point of viability, but I have the uncoordinated eye sensation that comes on, kind of heavy eyes, like they are not moving right. Then it goes away after a while...any person familiar with MG, I would appreciate your comments.
CoachMeg
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Meli - we all understand the fear that comes with some of these symptoms. I can honestly tell you I would have jumped for joy if the neuro had said the EMG's were normal. At that point, you start looking for any and all possibilities, but I would stay away from the worry of ALS.
If you are that concerned, then by all means schedule an appointment with an ALS center and/or specialist. I can tell you that a neuro associated with an ALS clinic or center is there because that is their specialty.
Perhaps start trouble shooting things on your own. Start PT or OT and see how things progress or not. Go back to your GP and ask for those blood tests that you mentioned previously.
I wish you all the best and I know that you will get wonderful tips and information here.
Love and light
Meg
If you are that concerned, then by all means schedule an appointment with an ALS center and/or specialist. I can tell you that a neuro associated with an ALS clinic or center is there because that is their specialty.
Perhaps start trouble shooting things on your own. Start PT or OT and see how things progress or not. Go back to your GP and ask for those blood tests that you mentioned previously.
I wish you all the best and I know that you will get wonderful tips and information here.
Love and light
Meg
sadiemae
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We already had our DX when went to Forbes Norris, so I do not know about there EMG expertise. I imagine you could lie to them and not tell them about your 2 clean EMG's. I seriously doubt they would even see you with 2 clean EMG's without a referral.
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