Author Topic: Does anyone know?  (Read 6676 times)

Michael

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  • Posts: 5
  • Reason for joining: AL Amyloidosis patient
  • Diagnosed: May 2015
Does anyone know?
« on: August 21, 2015, 07:22:04 pm »
Hello all
Just completed three days at the ucl after being diagnosed with prostate Amyloidosis in May of this year.
Very grateful for the treatment and care I received there, their professionalism was second to none!
Does anyone know if following the consultation at the end of the three days, whether the results etc will be posted to my home address?

Kind regards
Michael

patpinchin

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  • Posts: 603
  • AL - extensive in skin. mouth + palatal nerves '04
Re: Does anyone know?
« Reply #1 on: August 22, 2015, 06:46:13 pm »
Yes Michael, a copy of your detailed results and the letter following your consultation with the NAC Dr will be sent to you at home. The results and letter are sent to your referring Doctor, your GP and any other Doctor who cares for you, provided that you have instructed the NAC to do so.  Normally patients are sent a form to complete (with their appointment letter) on which they list the names and contact details of all Doctors whom they wish to receive the information. If you have not completed this form and handed it in at reception during your visit you can contact Ramon Lamarca, the office and appointments' manager ( (0)20 7433 2813) and provide him with the necessary names of your Doctors and their contact details. He will ensure all Doctors of your choice receive it.
« Last Edit: August 22, 2015, 06:48:43 pm by patpinchin »
Pat

Mike Brown

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  • Posts: 14
  • Married, 4 kids, 7 grandkids, Evertonian, golfer.
  • Reason for joining: AL Amyloidosis patient
  • Diagnosed: April 2012
Re: Does anyone know?
« Reply #2 on: August 22, 2015, 09:15:51 pm »
Hi Michael,

As you're newly diagnosed, I just want to wish you all the best in the management of the disease going forward. It's the first time I've heard of (specifically) prostate Amyloidosis but nothing surprises me now about what's affected by this disease.

You're in (we're all in) good hands with the expertise and care afforded to us by the folk in the NAC - absolutely world class. You'll find that they're also very accommodating in answering any questions you have between visits to the Royal Free. There's a whole host of contact information on their website: http://www.ucl.ac.uk/amyloidosis/nac

Good luck, my friend.

Regards,
Mike

Gary

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  • Posts: 36
  • Married to Joanne. Have a daughter Jessica.
  • Reason for joining: AL amyloidosis patient
  • Diagnosed: March 2007
Re: Does anyone know?
« Reply #3 on: August 23, 2015, 12:01:58 pm »
Hi Michael. You can also get your results sent to you by e-mail. I find this way is quicker, can then copy and give to consultants to discuss. Cheers, Gary.

Michael

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  • Posts: 5
  • Reason for joining: AL Amyloidosis patient
  • Diagnosed: May 2015
Re: Does anyone know?
« Reply #4 on: August 24, 2015, 09:26:02 am »
Thank you.   

Pat/Mike/Gary

That's been most helpful, I did fill the relevant form in regards to doctors etc.
Apparently I'm the only case of prostate amyloid that all the doctors I've seen so far, have come across, but as you mentioned Mike, nothing is surprising with Amyloidosis.
I will pass on my email address to the NAC and hopefully that will make things a little easier.

Thanks again
Michael

TerryB

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  • Posts: 2
  • Reason for joining: I am a patient with amyloidosis
  • Diagnosed: Approx 30/07/16 after a biopsy to prostate
Re: Does anyone know?
« Reply #5 on: September 14, 2016, 07:23:21 am »
Hi I was recently diagnosed with an amyloid to the prostate and had persistent bleeding in my urine.
I doctors tried 4 attempts in surgery to stem the bleeding but were unsuccessful.
I then underwent an embolisation to close of the veins leaking blood,this failed. A second procedure was carried out a week or so later and fingers crossed may have done the trick.
 Doctors are optimistic and hopefully can start treatment soon.