Jacksonville Florida; UF Shands or Mayo ALS Clinic

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Kellbellab

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I’m looking for pros and cons for the UF Shands and Mayo ALS Clinics in Jacksonville, FL.

Any input is greatly appreciated.

Thank you very much.
 

KimT

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Mayo. Much more organized, clean, plenty of food in the cafeterias, and referrals to other specialists when needed. Mayo Jax is all in one. People from all over the world come to Mayo for various things. Shands is a State of Florida University and operates on a very tight budget. It's hard to get in quickly, if necessary and their doctors are spread very thin.
 

Kellbellab

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Thank you Kim T.
I’m learning it may not be possible to get into Mayo utilizing Medicare part B benefit. I’m trying to find more information.
I really appreciate your insite.
As of now initial appointment is February 26, 2019 at UF/Shands.
Thanks again.
 

KimT

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I have Medicare B with a supplement and it covers everything at Mayo. I do have the richest supplement. If you don't have the supplement, Shands at UF takes everything. Even though Mayo says they don't accept Medicare, they will file for you. I've never had to pay a penny out-of-pocket there since being on Medicare w/supplement.

FWIW, you really need a supplement if you only have Part B. Part B will cover 80% of durable medical equipment but Supplement Plan F or G will cover the remaining 20%. The supplement has saved me tens of thousands of dollars in just two years.

I explored the advantage plans but, in Florida, they would have too many co-pays and didn't cover all of the co-pays for DME.
 

Kellbellab

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Kim,

Thanks again for your guidance and encouragement.
My mother (ALS dx 1.2.19 from Dr. Lucey in Fernandina, FL) has her “second opinion” evaluation at Mayo (Jacksonville) on January 30, 2019.
Do you have any other helpful information regarding this first appointment? We were advised it will take two hours and she will be invited back within two days. I would imagine they do an EMG. What else should she (we) expect?
Thanks, Kelly
 

KimT

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Mayo will do a clinical examination that is quite comprehensive. They will probably schedule her EMG first so the attending will have the results going into the clinical exam. That will definitely take two hours. They are very efficient with scheduling. They have two or three doctors dedicated to doing EMGs and they are all excellent. That's all they do all day long so they've seen everything. The nerve conduction study part will probably be done by skilled technicians but not always.
 

melab

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Very happy with Uf. Dr Pulley is caring and thorough. Went to mayo first. Not a good experience. The als specialist at mayo saw me in June. Said no als. He suggested maybe fibromyalgia. But gave no other avenues to explore. About a 2 months later after several calls to the neuro's team regarding substantial increase in symptoms I gained another appt with him. He scheduled labs and an emg. I showed up for the emg and they told me the Dr cancelled it. I was so upset. I waited another 4 hours to see the Dr. He spent about 15 min with me and he said i decided to cancel your emg. He said he thinks i have pain sensitivity syndrome or fibromyalgia as he stated in the first visit and not to return as he only treats als and I don't have it. He gave me a website for a podcast. Was able to get into UF and get diagnosed.
 

KimT

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Did Dr. Pulley give you the ALS diagnosis? I know he does all his own EMGs and gives immediate feedback.

That's a horrible experience at Mayo. After Dr. Boylan retired, they have a different ALS specialist.

When there is a lot of pain involved, it makes the diagnosis much harder. I was told that I have ALS and pain sensitivity syndrome but I've talked to lots of PALS who are in constant pain. The thing that made it harder for me to get diagnosed was that the pain showed up before any clinical weakness. I knew I was weaker but my base strength was that of a man so the doctors said the clinical symptoms didn't match up to the EMG. Now they do, unfortunately.
 

melab

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Yep shands does their own emg and responds promptly. Yes I too am very strong in the strength tests and in significant pain. Shands is very busy but the Dr actually calls
me back personally.
 
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