42 year old female. 1 year and 1/2 ago I started with left side facial droop that was originally thought to be bells palsy. Well it never went away and I constantly have lip tingling and tremors which an EMG confirmed was facial nerve degeneration. I now have twitching throughout my whole body which started 6 months ago. I now have a lump feeling in my throat with excess saliva. I am still active at the gym, no weakness, currently a clean neuro exam, clean mri and CT scan. I have no muscle atrophy either. Spinal tap scheduled for next month. I feel as though my symptoms are progressing, but no weakness and atrophy still. Neuro isn't saying much, just worried its going to be ALS
worried it could be...
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Nikki J
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- Mar 22, 2012
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- 04/2014
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You need to push your neuro to explain what they are thinking. It does not sound like ALS to me but you need to know where you are in the diagnostic process and what the plan is. You may need another opinion although it sounds like this person is being very thorough just not communicating well. But you are lucky to be in an area with outstanding neurologists. Are you going to one of the medical centers? Or are you seeing a community neuro? I have said it here before MGH is the best! If you are not there when / if you need another opinion go there.
First thing though you need to know what has been ruled out and what is still on the table and how do you figure this out
First thing though you need to know what has been ruled out and what is still on the table and how do you figure this out
MaxEidswick
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- 08/2013
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- Pinehurst
doesn't sound alsish to me, but if you are that worried go to an ALS specialist neuro, uni, or clinic.
Nikki J
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- Mar 22, 2012
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- PALS
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- 04/2014
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- US
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- Boston
We ask you to stick to one thread. If you are at the point of seeing a neuromuscular specialist ( I am not sure if that is the case) the entire MGH ALS department is superb. I see Dr Cudkowicz. I have also seen Dr Berry as part of a research study he was doing. They are both brilliant and kind. I do not have personal experience of the others in the department but have heard only good from their patients. It is hard to get an appointment with Dr Cudkowicz. I don't know if Dr Berry is easier. You can call and find out. I am not sure if you have to submit your records before getting an appointment. I did send my abnormal EMG but not sure if it was required
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