Als florida clinic referral.

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melab

Member
Joined
Oct 19, 2018
Messages
19
Reason
PALS
Diagnosis
12/2018
Country
US
State
FL
City
Clermont
Has anyone in Florida been to The UF als clinic in Gainesville? I live in the Orlando area
 
Your post was moved as your stated interest does not indicate a diagnosis. If you have been diagnosed please update it. It might also be helpful if you give us an update from your last post and who you saw

Thank you
 
You asked (somewhat), along the same lines of question in your last post. What happened with that?
 
Yes I am diagnosed.
 
I am sorry to hear it.

To edit your interest and add a diagnosis date select user cp and then the first choice edit details

While you are waiting to see if anyone has input on that clinic you might look at first clinic visit important post for some generic advice.

Good luck
 
University of South Florida might be an easier drive. I've been there and they were great. Very thorough.

I've not been to Gainesville but have been to Mayo.
 
Hello,

This is my first post and I do NOT have ALS, but have been to the UFHealth Dept of Neuromuscular Diseases and Movement Disorders twice, because I was exhibiting many of the symptoms of ALS last fall.

First, let me say that it is one of the best run departments within the UFHealth system. They are kind, compassionate, and very efficient. The first time I saw Dr Manganore, who did not believe these was a problem, but wanted to schedule a follow up EMG ( I’d had two previously in PA which stated ‘early stage MND was a possibility).

The second visit, for the EMG, I saw the Chief of the Dept, Dr. James Paul Wymer. I brought my wife (a physician, not a neuro) for moral support and in case it got technical. Dr. Wymer was extremely thorough, spent 1/2 hour going over my history, then doing a thorough exam before pronouncing I did not have ALS. He offered to to a full EMG to assuage my fears, however I declined. When an expert in the business tells you that you don’t have ALS, IMO you listen to him.

He spent a lot of time with my wife discussing Dr.related matters. He is very excited for future developments, and said that it appears nerve cells don’t die in ALS patients, they simply stop functioning. His passion really came through.

Though I didn’t see the full range of specialists, I can highly recommend UFHealth and the Neuro Dept. for all neuromuscular related matters.

Finally, I lost an Aunt to ALS at the age of 53, so I know first hand the devastating impact this disease has on everyone involved. It is my fervent wish and belief we will solve this terrible malady, and my hopes for everyone here are that it comes soon.

Wthensler
 
Wthensler thank you for the helpful post

Everyone please note the mods allowed the post as an exception to the dihals rule because it provides useful information requested by the op
 
Thanks for all the replies.
 
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