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Beata Krupa

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Hello everyone! I am looking for a recommendation of a good neurological/ALS diagnostic center(s) anywhere in Europe. A close friend who lives in Poland has been struggling with getting his similar to ALS symptoms diagnosed. Some doctors in Poland say it is ALS. But,other doctors say it is something else, but they don’t know what. He had many tests, including all the ALS diagnostic tests, done more than once. He was also tested for many other neurological problems, etc. Still, the doctors, who think that it is not ALS, don’t have an alternative diagnosis. We would like to find a really good center in Europe to ask for a second (or rather third) opinion.

We tried to ask John Hopkins, Mayo Clinic and several other centers in the US to look at his many (really extensive and professionally done) tests from Poland, and tell us if they think they can see or do anything else here in US. Unfortunately, they will not give a second, or any, opinion in a case of an international patient without seeing this patient in person. Traveling to US will of course be very expensive. Going to Europe is much more feasible. I know it it a strange question, but maybe someone knows what are really good ALS/neurology centers in Europe? I will very much appreciate any information anyone can give me. Thank you very much.
 
See Center overview | ENCALS.eu for a listing of some ALS centers in Europe. Click on the Department of Neurology, Medical University of Warsaw to see their contact info at the bottom of the page.
 
>Traveling to US will of course be very expensive.

any expense is small compared to ALS ... Houston Methodist


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Max - Monday, August 11, 2014 8:31:47 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Max, I know you love Methodist but it's a little over the top to dismiss the physical drain, expense of a trip to and stay in the States. Unless the person has resources/a visa to stay, they'll have to go home and get treatment there anyway. There are many academic hospitals in Europe that can diagnose neurological conditions, including MND differentials. When I worked in biopharma, I interacted with many fine clinicians from across the pond.

Beata, you've got some resources to go on. Often you can send films/lab results via e-mail in advance to help in the consultation and finding the right center. With some Googling, you can find the best neuro diagnosticians within your friend's geographic and financial reach. Please check back and let us know how things go.
 
Thank you very much for all the recommendations. (For some reason I cannot login to the Forums from my regular computer and I couldn't answer earlier.) I will definitely use the resources you provided and do more searching. I really appreciate help from everyone!
 
>Max, I know you love Methodist but it's a little over the top to dismiss the physical drain, expense of a trip to and stay in the States.

true, I'll send Jenny a note and see what her neuro teaching team in Oldenburg say ...
 
Max, thank you very much. I will appreciate any recommendations for smart doctors in Europe. My friend had a lot of testing done by some very capable doctors in Poland. They still don't agree on the diagnosis. I think not knowing is difficult. Probably not as difficult as the actual diagnosis, but difficult nevertheless. Thanks a lot. We do need help to find someone who knows how to approach the diagnostic process. All the "regular" tests have been done and are not conclusive . You all are a great support group. I am translating a lot of postings for Andrzej. Thanks a lot!
 
[9:08:12 AM] Jen Eidswick: where is he/she?
[9:08:26 AM] Max L. Eidswick: poland
[9:09:31 AM] Jen Eidswick: since poland is EU, they should be able to visit the ALS clinic in Berlin Charite
[9:09:47 AM] Jen Eidswick: i'll ask around though
[9:09:51 AM] Jen Eidswick: where in poland?
 
Another option could be the Charité Berlin , Professor Meyer.
Good Luck!
Arda
 
There's an echo in cyberspace.
ecapsrebyc ni ohce na s'ererhT.
 
Thank you very much again. He is in Poland, in Warsaw, and yes, since Poland is in EU, he should have access to medial care at most EU countries. Doctors in Poland are also very good, and we think that they are doing all what needs to be done, but right now they do not agree about his diagnosis. Some say it is ALS, but some keep testing and don't agree with the ALS diagnosis. I guess, It may be normal in such a difficult illness.

You have already given me great resources. I will try contacting some of the clinics in EU countries to find out what needs to be done to facilitate consultations, etc. Thank you very much! Beata
 
>ecapsrebyc ni ohce na s'ererhT.

took 2 secs
 
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