Looking for a doctor in North Hutchinson Island, Fla area

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calypso45

Active member
Joined
Jan 9, 2011
Messages
63
Reason
DX UMND/PLS
Diagnosis
10/2008
Country
US
State
FL
City
Fort Pierce
Hi Lisa,
I see you live in Ft. Pierce. So do I, live on North Hutchinson Island. Nice to meet you. I am looking for a new doctor any recommendations? My name is Barbi.
 
Hi Barbi-

I've moved your post from a non- ALS related area to its own thread so it will get more traffic. I've also tagged @lisa g to make sure she sees it, as your post was addressed to her initially. Hopefully someone in your area of Florida will be able to provide some possible names for you.

~F
 
Hi Barbi,
Nice to meet you. I can see by your diagnoisis date that you've had this for quite a while so I'm assuming that your PLS. I am ALS UMN dominant. My speech and walking are affected but I can still do both just slower.
I go to the ALS multidisciplinary clinic at UA Miami. Its guite a drive but I only go twice a year. I keep a local pulmonologist located in SLW and my local PCP to handle any issues.
 
Hi Lisa,
Yes 5 years ago I went to Miami and saw Dr. Verma. My sister has the same disease. So we are in a study to see if can a gene .

Thanks for a quick reply.
Barbi
 
Barbi,
Are you in one of Dr Benatars studies? I have been in one of his studies for 2 years now. Do you see any neurologists now? If you didn't want to travel that far there is a good neurologist in Stuart, Premier Neurology . Dr Noor Yono and Dr. Rabih Kashouty initially diagnosed me.
How is your mobility?
 
Hi Lisa,
I am not sure who the doctor in the study. My sister goes to Dr. Verma in Miami. He agreed to see both of together. We gave blood samples. I think they are looking for a common gene.

My doctor, Beristain, with Cleveland Clinic moved out of state. So I need new doctor. So may go to your doctor in Stuart. Did you like them?

My mobility sucks I am a mobility scooter and powerchair. I still transfer to car, toilet, shower and bed. My speech is also affected so I use an app on my phone for long sentences.

Yes I was diagnosed in 2008 PLS.

Barbi
 
Yes they are good. They are married. Dr Kashoutys father had ALS. They didn't offer an ALS clinic which is why I switched to Miami. I know someone in WPB that uses Nova clinic in Fort Lauderdale that they're very happy with. Again its a long drive.

I use a local pulmonologist in SLW that I highly recommend, Dr Pamer.
 
Lisa,
Thank you for the names of the doctors. It so hard to pick a new doctor. By word of mouth is better. I don't think I need a pulmonologist, yet my breathing seems fine but good to know for the future.

Are you still able to walk unassisted? Hope so, because once you need assistance everything changes. I love this forum so much great information.

Have a great day!

Barbi
 
Yes I can still walk unassisted but have used a rollator if I'll be walking along time.

My breathing is fine also I just go every 6 months to have a PFT.

I hope the doctor works out for you. You can always post on "next door" to find out what other doctors people in your area use.
Have a good day.
 
That is great you can still walk! What is PFT? Sorry I don't know if I should have it?
Thanks,
Barbi
 
A PFT is a pulmonary function test to measure respiratory. I have no issues with respiration as of yet so I have it checked every 6 months to see if there's any changes. Do you use a trilogy machine at night or during the day?
 
Lisa,
Yes I use a CPAP machine at night while sleeping.

I see it will catch any breathing issues early. Ok thanks for clarifying.

Thanks,
Barbi
 
Barbi are you sure you are using CPAP and not BiPAP? BiPAP is recommended for the MNDs.
 
Tillie is correct, I was diagnosed with sleep apnea before I was diagnosed with ALS. My pulmonologist said a CPAP didn't help with ALS so even though my respiration is fine now that somewhere down the line I would need a bipap so he transitioned me to a trilogy.
 
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