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Doctors response to Amyloidosis information

Fulviaschild2
0 Recommendations

I would like to know how people's doctors have reacted when they were told that their patient (your loved one) had amyloidosis. I plan on taking the pamphlet about amyloidosis to each doctor. They missed her symptoms for atleast a couple years. We have all of her doctor records from three different doctors that all treated her for different issues from asthma to acid reflux, in the end it was congestive heart failure in the emergency room which brought a valve replacement surgery, in turn ended up bringing her to 5 different hospitals in all, due to her location when she suddenly couldn't breathe or had NO energy. The fifth and last which she died at was Emory in Atlanta. We have seen in records where doctors have commented about her enlarged tongue but said "the patient seems to be fine with it". OK my question again, how have general practitioners responded to the knowledge of Amyloidosis?

Explore topics in this discussion:

Asthma Heart failure Surgery Arthritis Crohn's disease Acid reflux Multiple myeloma Polyneuropathy Rare diseases Rheumatoid arthritis Congestive heart failure Amyloidosis

11 replies

Muriel

Unfortunately what you have written is all too common. When dealing with one of 8000 rare diseases in the USA affecting 25,000,000 people we have to work on awareness. We have to take the "bull by the horns" and take brochures and pamphlets and flyers and bring them to the doctors. We have to write letters and we have to contact Sue Smith turnips@cinci.rr.com who runs the grass roots awareness campaign for the Amyloidosis Support Groups Inc. www.amyloidosissupport.com She will help you get the word out to doctors and hospitals. An enlarged tongue should not get by anyone and should be an immediate suspect for amyloidosis, and shame on our medical schools and doctors for missing this. I am so sorry about your mother.
Muriel

Fulviaschild2

Thanks Muriel, I guess my question is do doctors buy it that this may be more common. My sister has been having a lot of symptoms, as did my mother for a couple years, and when she try's to talk to doctors about it, it seems they dont think a biopsy is necessary and chances are she doesn't have it. Why are doctors so reluctant to do tests for it. Even when its requested? Are they more expensive or frowned upon? Whether they "think" this or that, why not just test to rule it out if the patient is requesting it? Let me know your observations on this. I believe we met you in Atlanta in July shortly after my mother passed. We invited Abraham who has multiple myeloma to come with us. Thanks for your reply. Debbie

Muriel

I do remember you. I hope you attend the meeting coming up in October. Paula Schmitt pschmitt_98@yahoo.com can give you info.

The ONLY definitive test for amyloidosis is a biopsy of tissue of the organ or fat pad or bone marrow or all three with Congo Red STain....if the doctor is clueless, how would they know to ask for a biopsy. WE have a wonderful article relating to this....on the first page of our web site....towards the bottom right of the first page www.amyloidosissupport.com CAP TODAY.....I suggest you print it and give it to every doctor you meet.
Good Luck...
Muriel

Fulviaschild2

Thank you Muriel and we do plan on attending. The doctors did a biopsy from my sisters colon or stomach last week, Terri was in the hospital all week with issues stemming from her colon and stomach. she did let them know about mom and the Amyloidosis...unfortunately they only looked for bacteria on the biopsy. We had hoped that since they had the tissue they would do it to rule out Amy...I will print off the amyloidosis support website the article and continue to spread the word. Thanks again.

khankoc2

Wow, that is the same thing that happened to my bro in law. " No he doesn't have it," as he lost weight, bladder function and was unable to walk. I like the dvd that GregS is making. I want to take it to the drs who treated my brother in law. I also copied the CAP article and I intend to send it to the Dr that did my husband's carpel tunnel surgery. I remember he said he had never seen one release the way Bill's did. If I knew then that that was a symptom... Anyway, I like the video that GregS is working on and I want to take that to all the drs I know. Actually, all the local drs that Bill had have been great. He was diagnosed right away with a rectal biopsy. He was sent right up to Clev Clinic and the went to Indiana to see Dr Benson and also went to Mayo clinic.

I too would like to see more drs aware and as soon as everything is stable with my husband I am going to make it my mission to "educate" the drs I know.
Regards,
Karen

Fulviaschild2

I like the video too. I want to support it, I would like to talk to some of mom's friends and see if we can get more support that way. I guess we're all in this together. I will continue to visit this sight and learn, share and reach out, whatever God allows. You guys hang in there. I'll be praying for you. Debbie

joan45

Hi Fulviaschild

Muriel is correct. There are so many doctors who do not know about Amyloidosis, However no excuse if it is in the family. Same thing with my husband. After 3 neurologists we went to Cleveland Clinic and they diagnosed it correctly. The neurologist at home said he does not do dna's because medicare does not pay for them is not an excuse. He never gave us an option We would have paid for ourself if we had known it would show. He had a bioposy he said did not show amyloid but Cleveland said they did not bioposy enough. Do not stop finding someone who knows about this disease. Clev Clinic,Boston, Emory,Vanderbelt, there are alot of hospitals out there and doctors who do know what they are doing. I do not know where you are from to help you but we did have to go 9 hours to Clev Ohio, Dr. Kerry Levin

joan45

Something you might think about. How did they finally diagnosis your mom. AL is not heredity . Familial Amyloidosis Polyneuropathy is heredity. If anyone else in the family has the same syptoms I would question their diagnosis. That is probably why they did not test your sister for it. You should have this record. She had every right to take that bioposy to another hospital to test it to make sure it is AL. We took it to both Clev Clinic and Mayo. They still did a stomach fat test on it also. His bioposy was from his ankle and no congo red stain was applied from the neurologist or where he sent it for a pathologist to do.
it. He refused for us to have it for Mayo so I called the Pathology Dept and they gave it to us directly.A dna which is just a blood test confirmed a diagnosis. Hope I have not confused you. Good luck

GaPeach

Hi Debbie,
The October meeting Muriel spoke of is in Jacksonville, not Atlanta. Unfortunately, we don't have another meeting scheduled for Atlanta this year. We are currently working to get next years meetings and speakers scheduled so please check back to our website regularly for updates. I will also notify all froup members once oue meeting dates are set. Have Terri get any unstained slides from her biopsy and send them to Boston for testing. I did this with my initial slides and never received a bill for the service. In fact they just reviewed slides from a colonscopy that I had done in May. Here is the link that explains their procedures for sending the slides. http://www.bu.edu/amyloid//doctors/testing.html

Because Terri has Crohn's Disease, that makes her more susceptible to developing Secondary Amyloidosis (AA) as well. The best way to treat AA is to treat the primary disease, which is usually an inflammatory disease such as Crohn's, Sjrogen's or Rheumatoid Arthritis. I'm certainly not saying that Terri may have AA, but it is something that needs to be ruled out...and her doctors should know that! Since there are no slides available from your mothers case, I would think that all forms of amyloidosis should be ruled out for Terri. At least then she will know for certain. Keep fighting for this testing and if it makes her local doctors made, so be it. They should be interested in her welfare and willing to send the slides off for testing. If not, fire them and have her come to see my gastro here in Albany. She is great and very willing to send my slides to Boston. I would be very willing to go with her if that is something that she would consider doing. Just let me know.

Paula

Fulviaschild2

Thank you Joan45, my mother was diagnosed by a doctor at Emory Hospital that saw the laundry list of failing organs and symptoms and immediately did an Amyloid test. She was diagnosed with Cardiac Amyloidosis or Primary Amyloidosis but when they checked her for Multiple Myeloma they said the test was positive. No other doctors in Gainesville GA or Columbus GA had a clue. We are thankful for the one in Columbus who admitted the fact and said he wanted to send her to Emory in Atlanta. Atleast we got a diagnosis before she passed. It was only 2 to 3 weeks after the diagnosis that she left us. My sister was finally tested and ruled out Amyloidosis but she seems to be following my mothers footsteps. My sister is only 47. Her doctor knows her concern for Amyloid since she has Crohns so they will keep an eye on her. Thanks for responding-its been a while since I have been on this website until this week. I need to get re-aquainted.

joan45

Your welcome and I hope all goes well for her. I heard Emory was good. Where are you from? We are in Ten. and had a hard time until the top Hematologist saw my husband. The doctors do make the difference. We are fortunate as I found a clinical trial for my husband after we left Mayo who had nothing for us. We have had many ups and downs, mostly downs. I prayed alot as we came home with nothing then I found John Hopkins who had the trial for ATTR Familial Amyloidosis Polyneuropathy. The trial was completed just recently for a certain mutation and now we(I mean my husband) are in our 6 months of the same medicine and hopefully it keeps stopping the progression. This is the only thing we have other than a transplant he does not want to do. And I agree.
If we had not gone to Mayo it would have been Boston.
I hear they do alot more for both AL and multiple myeloma however the doc at Emory I am sure will start some kind of treatment. I see alot on this site for Primary but very little on our FAP.Good luck

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