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Appointment at Johns Hopkins

PostPosted: March 11th, 2015, 8:31 am
by Scboy
I have an appointment with a neuropathy specialist next month at Johns Hopkins. They want to do yet another emg as well. I've already had a full work up at Duke and the dr said there is nothing left to explore and I have idiopathic small fiber neuropathy. My question is am I wasting my time and money by going to Johns Hopkins? Idiopathic is a hard diagnosis, but I just don't know if I'll get anything different from a dr at Johns Hopkins that I didn't get at Duke. Any insite is welcome. Thanks.

Re: Appointment at Johns Hopkins

PostPosted: March 11th, 2015, 1:14 pm
by Buzznerd123
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Re: Appointment at Johns Hopkins

PostPosted: March 14th, 2015, 4:23 pm
by Scboy
I think I'm going to go. Duke is good but John Hopkins is arguably the best place in the world for this crap I have. Keeping my expectations low though. I just don't want another emg. It stirs up fears again.

Re: Appointment at Johns Hopkins

PostPosted: March 14th, 2015, 4:29 pm
by Buzznerd123
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Re: Appointment at Johns Hopkins

PostPosted: March 14th, 2015, 7:21 pm
by Scboy
Will do. I hope they take some sort of interest in my case.

Re: Appointment at Johns Hopkins

PostPosted: March 16th, 2015, 8:50 am
by Ghayes420
Buzz,

Not sure what this is worth to you but I asked Dr. Robert Miller at Forbes Norris ALS Research Center in San Fran (he is one of the top in his field, 40 years of ALS/MND research) and he said that he was unaware that there was a link between SFN and benign fasciculations. I mentioned the studies. He asked if I get any burning like feelings in my hands or feet and I said 'no'. Just my two cents. I am not 100% sold on the connection either but it sure would be nice to discover one.
G