Our recent news on Amyloidosis

    • Anonymous
      March 5, 2009 at 2:42 am

      Too so many of you who have helped me in times of dispare, fear, sadness,etc.
      I will not mention all of you but you know who you are. I have not been on here in a while but felt you diserved to know that yes my husbands disease is not cidp,lupus,ms,gbs,or so many others here but it is still an autoimune disease and some of the same symptoms but not the same disease. I have been reading tonight in regards to your strong wills and helpfulness , your aches and pains and questions of why. It is so heartbreaking sometimes but I know for a fact that all of you need to know these are all a form of neuropothy and they do carry some of the same symptoms but not the same name.

      Yes my husband has extremely cold feet and they are swolen,(we are told due to circulation, yes he has pain in feet and knees, yes he has had carpal tunnel (around 45 years of age)(now 66) and yes he has sleep apnea,and yes he has depression (who wouldn’t) and yes oh yes he has fatigue, and yes he needs more sleep, and tremors, and he has had the sweats, terrible balance, dizziness,falling, had sepsis, ivig, pp, AND NOT ALL AT THE SAME TIME AND WE HAVE A FIRM DIAGNOSIS , BUT NO TREATMENT OR CURE BUT WE AT LEAST HAVE HOPE NOW.

      I have been lucky to have all of you here when I needed you and am now on another support system for FAP (Familial Amyloidosis Polyneuropathy) It has taken almost four years to get the right diagnosis and even though it is not a kind one we are now on a clinical trial thru John Hopkins Hospital in which he takes one pill everyday that we hope will either stabilize the disease or stop the progression. It is inherited . It is only inherited from a parent and is a gene that has misfolded into another number which comes from the liver . Do not think this is coming from me so that you can think you have it also. That is not the reason for this news. Many of thes diseases have some of the same symptoms and unless you get a good doctor and good testing will you feel better about what you have and how to cope with it. I only wish it was cidp at times but it is not and we have adjusted to that.

      I hope and pray that each and everyone of you will not give up and keep being proactive . If you are having trouble with your doctor not knowing or helping you ask him to refer you to someone else. You may have to go to a number of doctors until you get the right one unfortunately. We have been to Vanderbilt, Cleveland Clinic, Mayo and now John Hopkins. I cannot help you with insurance but maybe someone here can answer your questions on that.

      A truely inherited gene is different from a maybe I have a disease that runs in the family. My husband has a specific mutation with letters and numbers which came from a dna test that it was Amyloidosis. Not all diseases are inherited. My mother-in-law died of leukemia but had the disease my husband has but it had not shown its face yet, my father-in-law died of parkinsis
      (sp) a uncle of my husbands had the same gene and mutation but it did not come from him. It has to come from a parent. Our children and 5 grandchildren have a 50% chance of inheriting the same disease. Some of the cousins have it . There are laws out now(regarding dna’s) that will help you from not getting discriminated against but you must ask your doctor about that or go on google as some of them do not start until after Nov of this year.

      We have all gone thru alot: as patients and caregivers we all need support and I truely hope that you contact your state representative to keep trying to do more on these automuine diseases and neuropathy. Look on the web sites for your disease to find out more. Some I have done are going directly to a hospital also and look under neuropathy or lupus, or what ever you want to learn about. I am so thankful we went to Cleveland Clinic but at the time it was not our first choice but we were originally from Ohio and knew they were good and the distance was ok for us.

      Keep your chins up and deal with one thing at a time and if a doctor cannot help you try asking for help here on the web site. I thank many of you like LindaH, Dawn, DickS ,WithHope, sorry too many to list.

      I will touch base less often so I can concentrate on the other support systems but you guys are the BEST I thank you so so much.

    • Anonymous
      March 5, 2009 at 7:15 pm

      Thank you for the news and for the inspiration. With all that you have gone through, it IS inspiring to hear that you have hope. We all hope that this new medicine helps a lot. Please do keep in touch when you can. You both remain family.