Already a member? Sign in
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
I have had a severely swollen tongue with ridges for over 8 months now. Fat pad aspiration test-negative, tongue biopsy-negative. The docs keep telling me that my tongue is normal and not swollen. One even told me I probably had a swollen tongue my whole life and never noticed it. Extreme fatigue, C Diff infection, lack of concentration, memory issues. Does anyone know where to begin?
Surgery Bone marrow transplant Multiple myeloma Oxycontin Memory Rare diseases Macroglossia Revlimid Amyloidosis
Hi,
I'm sorry that you are having problems. My first question would be to ask where your biopsies were reviewed? If they were not performed by a lab that tests regularly for Amyloidosis they may have over stained or under stained the slides. I would highly suggest that you have the biopsy slides sent to Boston University Amyloid Treatment and Research Program. You can view their website at: http://www.bu.edu/amyloid//doctors/testing.html
This particular page gives you the information about sending the slides for review. I did this with my slides and was never charged for them to stain my slides or to review pre stained slides. Once they read the slides, you will know for a fact if you have amyloidosis or not. Be sure to check out all of the links , including the doctors tab....there is a lot of useful information on this website. You could also send your biopsies to any of the Mayo Clinic locations but I don't know if they charge for the service or not.
I have Localized Amyloidosis on my lower lip and on the inside of my mouth along my lower gumline where my gums and cheek meet. I was incorrectly diagnosed for 13 years so I know how frustrating it can be. You may also like to join our yahoo support group at www.amyloidosisonline.com. We currently have over 600 folks on that list. Many are patients and others are caregivers or family members. Someone on the list may be more familiar than I about the procedures for sending your biopsies to Mayo. This disease is normally treated by a Hematologist/Oncologist. Have you been seen by one yet? If not, please don't give up. You know your body better than anyone and if you feel that something is not right you do need to pursue it. But please, please have those biopsies sent to one of the hospitals that I told you about. They are considered to be the Centers of Excellence in treating this disease.
If you have any other questions feel free to ask...I will do my best to get you an answer.
Paula
Atlanta Support Group Facilitator
Amyloidosis Support Groups
www.amyloidosissupport.com
Hey,
Has your physician did a urine protein check? My mother had Amyloid for a long time before they found it and then it was too late. Early detection is so important. Her tongue as enlarged for a long time and like you the Dr said that it was ok and that it might have been due to some medication. When she was admitted to Emory in Atl , I watched her cardiac doctor explain to one of her students that my mom's tongue was enlarged and that it had ridges because it was too big for her mouth, she told her this was a symptom of the amyloidosis. We had never heard of this before, and obviously neither did the doctors that were treating her symptoms for years.
Paula(GA Peach) is right I would send the fat pad biopsy to mayo or somewhere that understands and knows about amy. You can learn more at the web sites Paula gave you. Just don't let the doctors keep pushing you aside, you need a definite answer and if they can't give you one go somewhere else.
Terri
Thank you for your reply. My fat pad aspiration test was read by dr. at Vanderbilt and then sent to the Boston Hospital. Both results were reported as negative. But then again, I don't know if the test was done correctly. My tongue biopsy was negative--but who is to say that was done correctly. The doctors keep saying that since both tests came back negative--I don't have Amy..
I have done lots of research and have learned that lots of drs. aren't trained to perform the tests or read the results. My tongue has been like this for almost 10 months now. I am scheduled to go to Mayo-Rochester Aug. 17th. Does anyone have any experience with this clinic? I guess I'm afraid that no one will be able to figure it out. I just hope and pray that they will run any and all tests to rule out the reason for my swollen tongue.
tks for your help
If your biopsy was sent to the Boston University Amyloid program they would have let you know if the slides were stained incorrectly. If they tested your slides you can call them to find out the results. Many of our patients are treated at Mayo and they are considered to be one of our Centers of Excellence. Do you know what doctor you are scheduled to see and have they said anything about doing a 3 day evaluation on you? If so, you could expect to have a fat pad and bone marrow biopsy, 24 hour urine study, Echocardiogram, and a ton of bloodwork that will include a Free Light Chain test (FLC). I would guess that they may also look down your esophagus to see how things look there. Take a look at this website...it includes some pictures of Macroglossia (swollen tongue) that you can compare yours to. You can feel secure in the diagnosis that you will receive at Mayo so try to relax until you get there. You may want to join our yahoo group at www.amyloidosisonline.com .....there are over 650 patients and caregivers on that group.
Paula
What site do I need to go to for the pictures? I just enrolled in the Yahoo support group. I'm awaiting approval.
Thanks,
Mary
maybe she was talking about this inspire website or NORD National Organization for Rare Diseases. I bet if you google the correct terminology and clicked on images you may see it there. My sister wrote you earlier and spoke of our mother. The biopsy w/the red congo stain is what they would need to do to see amyloid, is that the test they did on your tongue. I saw you mention tests but didn't know if they actually did that exact test which is the only accurate test that i know of for amy results...but i'm not a doctor. I do know that my mother had open heart surgery less than 4 months before she passed and nothing was visable to the naked eye. They thought the surgery to replace a valve was great and her heart was fine and strong...she had cardiac amyloidosis. She was only 67 years old. Glad to hear your going to Rochester. On a more positive note SCgirl's father had amyloidosis and had the bone marrow transplant and he is doing great and i think life is normal for him now...I hope this is not being too negative or bringing fear to you. Just wanted to share a little of our experience because so many doctors are uninformed about Amyloidosis. Please come back and post your results after Rochester..
OOPs!!!So sorry about that ....I looked up the link and then forgot to paste it. This is the link I was referring to. http://dermnetnz.org/systemic/amyloidosis.html
Paula
Read your info. Although this is not what my husband has but you are right about some pathologists do not check correctly for Amyloidosis. If it is amyloidosis as was the case with my husband we had the bioposy rechecked again at Cleveland Clinic and they said have them slice and dice it more. so you see it was not showing what it needed to show. Instead clevleand doctor sent blood sample out to check it for dna. That is what showed he had amyloidosis. A simple blood test if checked properly.
I am sure Mayo will find answers for you although we went already knowing what he had however we wanted answers to what can we do for it. Never got that from the doctor. sorry
Joan
Hi Joan,
I am assuming that your husband was diagnosed with familial amyloidosis. If so, what treatments do they have him on currently. The folks in Boston have a trial that is ongoing for familial amy and there is always Dr. Merrill Benson in Indiana who is fantastic.
Paula
Hi, my husband has had the enlarged tongue on and off since he waas DX'd last year and has it now. My question is, what is the normal treatment to take out swelling, we haven't found that yet.
Hi Luu,
What treatment regimine is your husband on? Is he considered to be in any type of remission? Once a remission is achieved, it can take up to a year for most organs to recover from the amyloid accumulation. Perhaps it is the same way with the tongue...while I have amyloid deposits in my mouth, I am fortunate that it has not yet made it's way to my tongue and Dr. Berk does not think that it ever will. Have you asked your husband's doctor about the swelling?
Paula
Hello, yes, we've asked about the swelling and we've been told it is the amyloids. We have what they call a "Magic Mouthwash" that he uses and it helps, but sometimes nothing at all helps. He has Multiple Myeloma and amy, so he's got double trouble. I don't know about remission, but his kappa/lambda ratio is .77, so that's good. He was at 695 last year. Revlimid and Dex for treatment...he's anemic all the time, so he takes Aranesp, plenty of oxycontin, zanax, darvocett, other meds such as phenerghan gell which helps a lot for sickness and he has that frequently. I have asked several times how do you tell where amy is and I'm always told it's all over. One doctor said if it's in the kidneys, it's in the heart. The only tests for amy done was performed on the kidneys and that's when his kidneys were shutting down completely. It's a battle, daily, but we're not giving up on it. Tongue swelling is so miserable because his teeth cut it and that makes it so sore. Better health to you in the future...Luu
Add to the discussion