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Moonmark

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Hello, again,

I have another appointment tomorrow with the local neuro at a university teaching hospital. I am actually seeing the physician's assistant in the neuromuscular disease clinic as a five month follow-up visit.

For those who have not read my earlier posts, I have a 9-month or so history of off-and-on muscle twitching, some weakness, particularly in my right hand, arm, and shoulder and also some in right leg, foot, ankle, fatigue, off and on again excess saliva, and pain. the pain comes and goes in different places, most recently affecting the area around my ribcage, back and front, on one side, making it difficult to take a full breath in sometimes. I have also had a few instances of coughing fits while swallowing liquids, but not sure what to make of that, as they have been few and far between. I had a normal EMG of both legs and one arm in June.

anyway, I am not really sure how to approach these appointments. just let the neuro or the PA do their thing, their tests, etc. or be more assertive, asking for different tests, suggesting different possibilities of diseases/conditions that others have mentioned to me, or what. I have had people suggest I ask for additional more specific testing for Lyme disease, others have said to request a single fiber EMG, still others have suggested a sensory motor panel for CIDP. None of these people are medical professionals and neither am I, but I do think it helps to advocate for oneself and be assertive in the doctor's office. I guess the one area I would like to explore is whether a second EMG might be in order, given that six months have past since the first one. I think that might give me some greater peace of mind that whatever is happening to me is not ALS or some related disease. I am also thinking that it might make sense to do the facial region, since much of the twitching has occurred here and I have had the bouts of saliva, etc. The twitching is really not pronounced for me, though, and it is very likely that it will not happen in the presence of the doctor.

anyway, just looking for advice on how you might handle this doctor's visit. I don't want to waste the opportunity to obtain more info on what it is that might be going on, but I also do not want to "steer" anything in any particular direction, as I am not an expert on any of this stuff.

any thoughts?

thanks-

Sandra
 
If the doc thinks you've been Googling they sometimes shut down. I'd state your symptoms you've noticed and see what they say. If you get to the half way point of the exam and they haven't volunteered anything new, then I'd start to ask questions.

AL.
 
hi sandra.
i will keep you in my thoughts tomorrow and hope it all goes well.
als advice is good,let them give there thoughts first .

as for tests,i am not sure what you have had done other than the emg you stated.
but anyone offering you suggestions can be helpfull,as many tests as possible to figure it out can sometimes be needed.
when i first joined the forum i noticed muscle biopsys were mentioned which is one test i never had,i have ofton thought if maybe i should have had one of these.

you know most of us here are responsible and would never try to diagnosed anyone.
hopefully you maybe a step closer to some answers tomorrow.
 
Sandra,
I can only echo what Al and Caroline have already suggested. I would imagine that using layman's terminology rather than "medical speak" is to your advantage. That, and not trying to steer or color your symptoms to fit any category would be helpful at getting answers more expeditiously.

The very best of luck tomorrow, let us know what happens!
 
Sandra, Thanks for voicing your concerns about how to talk to your doctors. I have my long-awaited neuromuscular doc appt. at a teaching hospital on Thursday and have exactly the same concerns that you do. I have gathered my MRI films and test results and filled out his preliminary paperwork, but don't know if I should tell him that I fear that all signs point to ALS. I can't offer any advice but hope that knowing someone else is experiencing the same anxieties will help. I prat we both find out it's not what we fear.

Karen
 
I feel your frustration believe me, the best way to find out what the tests say is to request a copy of your medical record because sometimes what they say to you and what is in the record are two different things. Sam
 
Good luck at your appointment. Let us know how it goes. :)
 
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