Question about Mayo in Jacksonville

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Ninasfriend

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Hello,
I am a friend of a wonderful woman named Nina. She is 51 and is in the process of possibly being diagnosed w/ALS. She contacted Mayo in Jax as they are one of two clinics in Fla. that specialize in ALS here in Fla. Unfortunately her appt is not until Dec. 29th. I am not sure if this is common place or not to wait this long for an appt. I also have been diagnosed with a rare disease (actually very rare cancer) and had to also to go a speciality clinic for treatment but did not have to wait over 1 month for my first appt. I know how hard it can be to wait when your not sure what it is that is wrong with you.
My question(s) are:
Has anyone had any personal experience positive or negative with Mayo in Jax?
If so, does anyone know whether waiting this long to get into this facility is common place or not and it there any info to help expedite this so you can get an earlier appt?

I offered to help my friend since I also know how it is have something rare and very scary. I also know that because of the rareness it is very, very helpful to go to these speciality clinics since these people are knowledgable and will either correctly rule in or rule out whatever it is your dealing with.

I appreciate all your help and understanding in this matter.
Best to you all
Ninasfriend
 

Zaphoon

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Ninasfriend,

Please tell Nina not to expect any quick answers. That way, if she gets them quickly, Great! The process of diagnosing anything neurological has proven often to be a very lengthy process. Before ALS is given as a diagnosis, eveything else under the sun that could possibly mimmick it has to be ruled out first.

Many on this forum have been in limbo for several months and a few into the years awaiting a diagnosis of something or other.

On a more positive note, it regularly happens that after an initial EMG, ALS is ruled out. It is a rare disease to begin with and that should also be of comfort to Nina.

They will test her blood, take pictures of her brain and spine, test her nerve conduction and muscles more than once.

Zaphoon
 
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Ninasfriend

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Question about Mayo

Zaphoon,
Thank you very much for your very quick reply. My friend Nina and myself are finding out alot about the potential other diagnosis' you can get. I guess though that going to a clinic who has the extensive expereince and informtaion about this very rare disease at least will help to either identify it as ALS or another neurological disease.
Just trying to identufy those health care professionals who can do this is so very important. We are both nurses and know how easily education and expereince with rare disease can make it virtually impossible to find the RIGHT diagnosis.
Best to you and again Thank you for your help
Ninasfriend
 
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