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Is There Any Local, As Opposed To Systemic, Treatment For This Disease’s Affect On Fingernails?
Weightlifting And Amyloidosis:
My doctor cautioned me against lifting heavy weights. He feels this would further harden my already hardened and enlarged heart. He suggests very easy weights but with more repetitions which would make this more of an aerobic exercise. Does anyone in the community have any weight exercise experience they may wish to share?
One thing not mentioned that could greatly impact patients with wild type amyloidosis is the increased risk of bicep tendon tears. For that reason alone, I would avoid lifting weights. You most… read more
Hello Iam Having AA Amyloidisis (as Per Biopsy) How Can We Stop Amyloids Generation. So That Xx Creatine Level Come Down
Hello Iam Having AA Amyloidisis (as Per Biopsy) How Can We Stop Amyloids Generation. So That Xx Creatine Level Come Down
How Easy Is It To Travel On Long Flights With Amyloidosis?
I want to travel with my wife who has amyloidosis and I want to know about traveling on flights that are 9 hrs. Long
In Dec I did Thailand to Seattle and then coming home, Chicago to Thailand. One flight was 15 hours and with the connection, close to 24 hours air time alone. I didn’t have any issues with the… read more
How Important Is The Ejection Fraction In Your Evaluation?
Ejection fraction measures the percentage of blood that your heart’s left ventricle pushes out with each beat. It is one measurement of overall heart function. The number decreases as heart failure… read more
I Was Just Diagnosed With Amyloids Of The Small Bowel Does It Stay There Or Can It Go Other Organs
Hi I Am Ne To The Group. I Am Writing In For My Father.
My father is 76 years old and has extreme fatigue and horrific coughing that no one could seem to find a problem with
The coughing cause him to be short of breath. He then had afib and flutter and had 3 cardiac ablations this month and been shocked
Prior to that, he had 2 months of sudden carpel tunnel syndrome that he had surgery for
Long story short someone thought he may have ATTCRM. They ran bloodwork and found he has extremely high Kappa light chain Free serum
61.4 and the range is… read more
How far are you from Mayo? It would be a good idea, to call them and asked to speak to the amyloid team. He could be seen there, and treatment could be done locally.
Tafamidis Therapy Prophylactically?
Recent diagnosis from bilateral CTS. Mayo says ATTR, Cardiologist suspects wild type. Kidney, liver cardiac tests normal. Anyone receiving tafamidis therapy to prevent further progression of disease. In my option, seems tragic that a patient has to progress to some level of cardiac failure before starting treatment if Vindamax or other tafamidis can slow progression.
I have PN as well. Entire left side, and now moving to my face this morning. My son got his meds in 3 days. It will be a week this Tuesday for approval of grant. How do you pay for med?
What Does This Mean?
Please tell me your thoughts
Increased kappa free light chains and an increased kappa/lambda ratio may be seen with plasma cell disorders that produce excess monoclonal kappa light chains.
Microscopic exam/diagnosis:
Kappa Lt Chain, Ser. 32.7 High 3.3-19.4
Lambda Lt Chain, Ser (Phone number can only be seen by MyAmyloidosisTeam users).3
Kappa/Lambda, Ser. 1.89 High 0.26-1.65
LEFT ABDOMINAL WALL FAT PAD (EXCISION)
-… read more
To get even with me the VA diagnosed me by the psychologist Madison McKensie to have the following placed in file
Schizotypal Personality Disorder
and
Somatic Syptom Disorder
The Staff at the VA said… read more
What Documentation/test Results Do We Ask For To Know That Our Grandmothers Amyloydosis Was Typed?
Children and grandchildren are wanting to know if it was the hereditary type or not. Have asked Haematologist for months now but not had anything in writing. Have got a phone consult tomorrow but worried we will just be talked over and not get what we need for the family to know if they could be affected or not. Thank you so much!
Good advice from Mary3. Thanks. Frank2 here.
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