Looking for a recommendation for a second opinion please I m so frustrated...
get to BU..John Berk..call now for appt 617) 638-4317
Dr zonder in Detroit or dr Hanna at Cleveland clinic if it's cardiac
The docs at osu are good though. Hang in there.
Dr. Zonder - he is amazing.
Hi Pamela, although your husband's family history did not report any fac case it could be indeed him who passed the gene to your son. The mutated gene can be transferred but many individuals do never develop symptoms. It is not possible for the genetic testing not to detect the mutation, what you say about the biopsy is for the cases of detecting the start of the symptoms. The important issue here is to look after your self because maybe you have developed the wild type of the disease. Meanwhile your husband's testing will come out and you will have a clearer picture. Top priority though should be you!my warmest wishes for good news and quick recovery and cure to you and your family!
I strongly recommend you seriously consider Muriel's advice...she's very knowledgeable!
Thank you! I'm in Ohio. I will ask about a remote second opinion if possible.
I'm an AL patient at OSU. I'd recommend going to BU for a second opinion. Not sure if they'd do it remotely but it would be worth the trip to stop wasting time.
Dr Berk has a team to check you for EVERY kind of involvement. 3 day appointment once a year for me. You can probably get travel assistance either thru your hospital or the Amyloidosis Foundation. And the American Cancer Society Hope Lodge offers free accomodation and a shuttle to and from the Medical Center .They are wonderful.
Isn't Dr. Merrill Benson in Indy -Iu health - one of the foremost guys in the country for familial Amy? I thought I read that about him. I think he's very well published on the topic.
Dr Comenzo at Tuffts in Boston was my dr I had cardiac al and had a heart transplant in 2012 at CMC Main in Charlotte NC and they referred me to Dr Comenzo and I had a stem cell transplant in Boston in 2013 then went home after 30 days of isolation and had 1 year of velcade off 1 year and now back on velcade. Blessings to you
Amen! Dr. Comenzo saved my son's life in 2011!
How old is your son? How is he doing?
Lana Hammill he turned 50 in June and is doing great! He was out of work for 32 months and went back full time! God is good! He had a bowel obstruction a couple of years and--miraculously--hasn't needed chemo since, because his numbers have remained normal. He sees Dr. Comenzo every October, and we pray constantly that his numbers remain normal! He says getting old is a good thing and that every day is a good day! We'll keep you in our prayers too!
Thank you! Blessings to you
Lana Hammill are you seeing Dr. Comenzo?
No I live in NC so it's too far and my insurance won't pay but the insurance I had in 2013 did pay so I was able to go to Dr Comenzo for my SCT. I'm sure he probably remembers me when you go in October tell him I said hello! Tell him I am the one who has had a heart transplant. I think my Amy Dr is consulting with him.
He is so sweet when he found out the Amy had come back he called me not his nurse but him and that was amazing.
He was going to be about an hour from us in VA in a meeting. My husband met him there and he took a suitcase back to my daughter-in/law in Boston! Just a down-to-earth nice person! Where do you live in NC?
Gold Hill it's about 45 minutes from Charlotte
Lana I hope you can attend the support group meeting in Charlotte at the end of October. If you want to be on my mailing list for the meeting send me an email at email@example.com and I will add you. I will send specifics out in a couple of weeks about the meeting. Dr. Sanchorawala from BU will be our guest speaker.
Excellent! It will be great to meet you in person!