My response to the all to frequent remark, « Well at least you haven’t got cancer, » I smile and say something along the lines.....
You are right there. Amyloidosis is as bad if not worse than many types of cancer but worst of all is that there is a significant number of amyloidosis patients who do not survive beyond 6 months of a late diagnosis. The tragedy for amyloidosis is that as a rare disease it is not in many Drs’ diagnostic thinking. That means when amyloidosis patients present to their Drs with a rather vague non specific set of symptoms, which relate to a number of other more common disease, amyloidosis is not a disease that Drs often think about. There are Drs who have never met an amyloidosis patient in their entire career so it is not unheard of for patients to take 2 years or longer before being referred to the one and only National Referral Centre for Amyloidosis in London where there is just a small team of the ONLY specialist amyloidosis Drs in the country. There will not be any Dr in the U.K. who does not have cancer as one of the first three chronic incurable life threatening disease in mind. Amyloidosis is not usually even on the list. How about you giving an amyloidosis newsletter to your GP when you next see him/her and ask him/her to please read and pass to a colleague as your are trying to do just a bit to raise amyloidosis awareness among medical professionals? If you wouldn’t mind doing that please, it might save a life.
That usually does the trick.
As for loss of appetite and/or altered taste........ when you have had a relentless powerful overwhelming salty taste in the mouth which worsens with talking and almost any activity for more than a decade, then anything which is other than bland is impossible to eat and it tastes even more salty to the extent that it makes me feel sick. I always loved highly spiced food and different cuisine from many different countries but anything with a very savoury taste is off the menu for me. I never used to have a sweet tooth, but since oral amyloidosis I have amyloid in all my salivary ducts which means that I don’t have a normal saliva flow to protect my teeth from decay so on the strict instructions of my dentist if I want to avoid continual restorations or worse still lose my teeth altogether, I have to avoid added sugar in foood and drink like the plague.
How I yearn for a piece of home made cake, a glass of wine or a few chocolates but I know the next time I go to the dentist he will spot a cavity. I have bad enough symptoms from my mouth misery without having to have extra dentistry!
I count my blessings I do have a caring loving family and sympathetic and empathetic Drs who all understand. Without them I would have gone under many years ago.
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