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Looking for a doctor

Manickmutt
  • By Manickmutt
  • Posted March 6, 2009 at 7:28 pm · 4 replies
  • Shared with the public
0 Recommendations

I was diagnosed about 32 years ago after losing my speech, ability to walk, balance, swallow and being overcome with tremors. After about 15 years, and a number of hospitalizations, including some for psychiatric symptoms, I regained my health and have been stable for about 17 years now.

I was a patient of the late Dr. Irmin Sternlieb until he retired, then of Dr. Nacht, who died in a bicycle accident. Then I saw Dr. Schilsky once, who moved to Connecticut, which is too far for me to travel by car, especially since I have moved from NJ to Pa.

Does anyone know of a doctor in the Bethlehem, Pa area who is familiar with Wilsons' Disease? Though my illness is under control, I still sometimes have questions that only an expert can answer.

Explore topics in this journal entry and replies:

Wilson disease

4 replies

Dvora

Hi,

I live about 45 minutes from Bethlehem. Dr. Schilsky is my WD doc, but I haven't seen him since he moved to Yale (he hasn't requested it, since my numbers have been acceptable; I am "pre-symtomatic")

Schilsky had given me the name of a guy in Philly:
Raj Reddy@ U Penn. I know you said getting to Philly is hard, but maybe he can suggest someone closer.

An alternative is to e-mail Schilsky (his address is on the WDA web page) and explain your previous physician history.

And make sure to "bug" your regular physician to learn what s/he needs to to treat you. That's what I've done!

Cheers,
Dvora

esther2k5

I did a little research for you but don't know if any of them have expertise with Wilson's--you'll just have to ask.
Check out these neurologists in Allentown:
http://402care.lvh.com/FindADoc/SpecialDocSearchResults.aspx

and this page of Bethlehem neurologists:
http://tinyurl.com/cr358r (shortened url from very long url at findlocaldoctor.com)

Hope this is helpful.
Esther

Dvora

I've heard from others that Dr. Askari (in Michigan, I believe) is helpful via e-mail.

Remember, too, that the WDA site has info you can bring to your physician if she is not familiar with what the "care and feeding" of a patient with WD requires. :)

If you have been stable, your regular physician can act as the go between to order your labs and you can send them to Schilsky or some other WD physician of your choice (as long as they agree). The WD doc can determine if your labs are where they are supposed to be.

You haven't said, if you don't mind telling us, whether you are on a chelator or taking zinc.

Dvora

moontester

I thank you for sharing your symptoms of Wilson's disease. We are currently dealing with those same issues with our 19 year old daughter. Will you please share how you overcame all the difficult neurological symptoms?

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