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Need help finding MG doc in Phila area

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Unread 05-03-2012, 08:01 AM   #1
tealbingy
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Default Need help finding MG doc in Phila area

I did a search in the forums, but did not find an answer. My DH was diagnosed with ocular MG about 18 months ago. It (happily) has been in remission since then, but he is now experiencing some eye droop and minor swallowing issues. As the mestinon script (never filled) is now out of date, and the neuro-opthomologist he saw originally said to go to a neurologist who was familiar with generalized MG, we need a doc.

We are in Bucks County, about an hour NE of Philadelphia. We would appreciate any recommendations from anyone on the board familiar a neurologist in the area. So far, we've found the one that the neuro-opth doc recommended who has an office about a half an hour away, but are a bit concerned because this doc is in his 60's - would be nice to find someone who may be able to have a long relationship with my DH.

Many thanks for any help!
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Unread 05-03-2012, 12:34 PM   #2
suev
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I would highly recommend you go with the neuro-opt recommendation. Not all neuros think MG is 'real'...ie. it is often not their first dx...esp if blood tests and SFEMGs don't support the dx. Your neuro-opt must have confidence in this guy ...maybe even has some working relationship with him.

And if you try this doc and don't like him, his approach, etc. - you can always get a second opinion.

Whatever you decide, get an appointment soon. Neuros may have many weeks to months on new patient appointments....and MG can sneak up on you sometimes with surprising speed. Any swallowing issues must be taken seriouosly - esp when you have no medication (Mestinon) on hand. Watch for choking and shortness of breath. If it were to become difficult to expand lungs for air (like you feel it's requires effort), go to emergency room.

In the meantime, be aware most MG'ers find summer the most difficult time of the year. Under no circumstances should he get overheated....really makes us weak! Whatever you decide, please get an appointment soon. MG never waits 'until its convenient'!!

Good luck ... hope all goes well.
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Unread 05-04-2012, 04:33 PM   #3
tealbingy
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Default Thanks for the response

I appreciate the response - I've gotten 3 good recommendations - 2 through a neuro nurse at the local hospital who told me about one doc each at the two big teaching hospitals in Phila., and 1 through an MG patient who works at one of those hospitals and sees a doc at the other.

As the neuro who was recommended by the neuro-opth has an office much closer, we'll probably check him out first. A big advantage is that he has admitting privileges to a hospital that is well-respected and half an hour closer than the "biggies" in the city or their satellites.

I also hear your caution about getting the appointment soon -I need to convince my DH that we need to schedule something ASAP, and your info will help me to do that - he likes to hear good reasons, and you gave me some!

Thanks for your willingness to answer!
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Unread 05-04-2012, 05:23 PM   #4
pingpongman
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I agree with Suev for all the same reasons. Some of the most respected MG doctors in my region are older (60+) and have treated some of the most complicated cases. That being said I have seen 4 different Neuros until I found one I was happy with.
Mike
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Unread 05-05-2012, 04:13 PM   #5
4-eyes
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It took me 4 tries as well. Just because a neuro is said to be good doesn't mean he/she will be good for YOU!

Good luck.
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Unread 05-06-2012, 06:33 AM   #6
tealbingy
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Default Thanks to all

I appreciate the kind advice. We now have four doc referrals in the greater Phila area, and will begin to assess who is accepting new patients and how much MG experience they have. If needed, we can work our way down the list, so to speak, to find the best fit for my DH. I'm so glad that we are in the age of the internet - I can just imagine what it would be like for someone to get good info even 15 years ago without this tool.
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