Second opinion?

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kellysal

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Hi I was just Diagnosed with Probable Bulbar ALS. I have seen 3 neurologists and was sent to U Miami to be told yes it looks like early onset. See you in 3 months for another EMG . Go live your life! I live in Florida but will travel for the best center on the east coast Any suggestions ? I was thinking Mass General Healey Center, Mayo in Jacksonville, Johns Hopkins ? So far I have had EMG (bad for tongue) Limbs are fine . Slight slurred speech sometimes .
 

Nikki J

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A second opinion is always advised even when the diagnosis is made at an excellent ALS clinic as was yours. All of the places you listed are perfectly good ideas. I personally think MGH is the best but am biased. Of course it is also the furthest for travel.
 

kellysal

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Thank you Nikki. I am originally from RI so Massachusetts is like home and I have always gone to Mass for medical care. So I'm Biased as well. There are so many to pick from and I want a the best treatment facility with the best research . I was sent to U Miami by my Neurologist and told see you in 3 months now they don't have another appointment till March. And just sent me on my way ! I asked if there was anything I should be doing and he said "Go live your life" . Great advise but I would like to know if I could be taking something or doing something that could slow the progression at this early stage any input would have been nice from them . The grey zone is tough! Thank you for taking the time to answer I hope you are doing well
 

Nikki J

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I really believe mgh is what you want then. Very research oriented very patient friendly willing to talk about things to try like supplements if you want. You could also do some follow up telemedicine visits. My sister used to travel fromMD for clinic They are used to seeing out of state even out of country patients. My first visit a couple of people asked with great interest where are you from. I think they were a little disappointed that I was local not from somewhere more exotic!

did they offer you nuedexta? There are anecdotal reports and a little research showing it may help with bulbar at least transiently. I believe all the bulbar people get offered it at mgh.
 

kellysal

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Nikki ! Mass is exotic when your from RI! They offered me nothing.. Just said you have some Hyper reflex, tongue scalloping, slight slurring on and off and fasciculations in my left arm . EMG shows denervation in the tongue. Limbs where clear so he cant give me an official diagnosis yet. See you in March! I was so shocked I didn't know what to say. Thought I was going to pass out on the sidewalk .Prior to going to Miami my Neuro (third one) did 2 MRI's .EMG, swallow test and an ultrasound and tons of bloodwork all normal. I have read so much I'm confused . I just want to go somewhere that can answer my questions and make a care plan and have something to offer . I called and left a message with MGH it sounds like you are happy with your treatment Thank you again!
 

nona

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I am also partial to MGH.
 

KimT

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I went to Johns Hopkins and Mayo (Florida) for my second and third opinions. I found Mayo Jax to be very thorough. They have one doctor who does all the EMGs for bulbar. The thing I liked about Mayo was the close proximity and the availability of doctors for other issues.

Johns Hopkins was also good but reminded me more of University of Florida in that the doctors didn't give me as much time as I would have liked.
 
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