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Research / Myeloma UK Patient and Carer COVID-19 Survey 3
« Last Post by Miriam Vered on May 10, 2021, 09:11:00 pm »

Myeloma UK have asked to post the following:

Myeloma UK Patient and Carer COVID-19 Survey 3


The final Myeloma UK Patient and Carer COVID-19 Survey was launched last week. We would like to invite you to participate in the survey.


Why are you doing this survey?
The previous surveys told us so much about your experiences during COVID-19. For example, the results from the previous surveys in 2020 ensured patients had access to a range of treatment pathways as well as ensuring patients were prioritised throughout the pandemic. We still want to know how COVID-19 has impacted diagnosis, treatment, care and support for patients, their families and friends.


Who is carrying out this survey?
The Health Services Research Team at Myeloma UK are carrying out the survey.


How long will it take to complete the survey?
It will take approximately 20 minutes to complete, but some people may take less or more time to do so.


Can I let other people know about the survey?
Yes you can. You can find out more about our survey on our website here (https://www.myeloma.org.uk/news/third-covid-19-survey/).


If you have any questions, please email us at research@myeloma.org.uk


If you want to take part in the survey, please click the link below:


https://www.surveymonkey.co.uk/r/MUKCOVID19Survey3


Best wishes,


Dr Sandra Quinn


Research Team


Myeloma UK
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General Discussions / Re: Life insurance
« Last Post by Miriam Vered on May 10, 2021, 09:15:51 am »
Hi Val,
Professor Gillmore advises that you should contact the NAC and request a doctor's letter.
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General Discussions / Re: Advice
« Last Post by Miriam Vered on May 10, 2021, 09:12:39 am »
Patients referred to the NAC have usually already undergone some investigations, and the referring doctors send the results of these investigations to the NAC doctors. When patients are seen at the NAC, further investigations (blood tests and imaging tests) are performed at the NAC as appropriate.

When the results of your blood tests are available you can ask your doctors to consult the NAC doctors about your case.
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General Discussions / Advice
« Last Post by Cabre on May 07, 2021, 09:11:54 am »
Thanks for your reply.
Do the consultants see patients with symptoms or do they have to see some actual evidence.?
I am having some more blood tests so may no more soon
Thanks
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General Discussions / Life insurance
« Last Post by Val on May 07, 2021, 08:51:26 am »
Hi All,

I was diagnosed with AL pulmonary amyloidosis in 2016. The condition is asymptomatic. Was investigated due to back ache complaints which led to a scan which showed multiple lung nodules. Had VATS procedure and diagnosis was confirmed.
I am not on any treatment and I was told that pulmonary amyloidosis is almost always an incidental finding.
I was shocked this week as I was refused life insurance as it supposedly predisposes me to early mortality?
It seems like the underwriters see amyloidosis and alarm bells go up .

Any advise on how to address this? Any knowledge of insurers who know and cover for this ?

Val
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General Discussions / Re: Investigations
« Last Post by Miriam Vered on May 07, 2021, 05:20:34 am »
Some rheumatologists, neurologists and ophthalmologists may have knowledge and experience of amyloidosis, while others may not. You can ask any of your doctors to consult with the NAC doctors about your case and whether you should be referred to the NAC for evaluation. Contact information for the NAC consultants is available here: https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre
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General Discussions / Investigations
« Last Post by Cabre on May 05, 2021, 10:17:40 pm »
I am in the process of having some investigations by a rheumatologist.
Will a consultant who is doing a nerve conduction test be able to identify possible amyloid symptoms?
Also I am seeing and eye consultant for some eye issues . They are from a top London eye hospital. Will they know about amyloidosis? I have swelling on my eyelid, some mild purpura and one eyelid is drooping.
Thanks
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General Discussions / Re: Amyloid in muscle or soft tissue
« Last Post by Miriam Vered on May 05, 2021, 01:48:49 pm »
No, amyloid in the soft tissue or muscles cannot be seen on x-ray, though it can often be seen on DPD scans.
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General Discussions / Amyloid in muscle or soft tissue
« Last Post by NIGELJOH on May 04, 2021, 10:32:20 pm »
Hi,can amyloid in muscle or soft tissue be identified
in an ordinary x-Ray?please.thanks in advance.
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General Discussions / Re: Is it Amyloidosis?
« Last Post by Comete on May 03, 2021, 03:53:01 pm »
Thanks for your help.  Do you think it would be best to wait until the current Maxillofacial process is complete, or do so at the same time? I've now got an appointment on 11th for Maxillofacial.
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