Looking for a doctor in North Hutchinson Island, Fla area

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calypso45

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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.
 

ShiftKicker

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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
 

lisa g

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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.
 

calypso45

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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
 

calypso45

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lisa g

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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?
 

calypso45

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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
 

lisa g

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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.
 

calypso45

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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
 

lisa g

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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.
 

calypso45

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That is great you can still walk! What is PFT? Sorry I don't know if I should have it?
Thanks,
Barbi
 

lisa g

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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?
 

calypso45

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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
 

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Barbi are you sure you are using CPAP and not BiPAP? BiPAP is recommended for the MNDs.
 

lisa g

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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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