Hello AC, A couple of questions: First, what are the genetics of your myeloma? And, second, what doses of Revlimid, Velcade, and dexamethasone are you currently taking ? I generally agree with what TerryH has said. If the goal is a complete response (which it obviously is since you had a stem cell t...

For the greater Myeloma Beacon readership, some background ... Morvan's syndrome patients have acquired NeuroMyoTonia (aNMT), a disorder of peripheral nerve hyperexcitability that results in continuous muscle activity and symptoms of brain inflammation. They also may have an unusual sleep disorder w...

Hello mousey0, I used to practice in Albuquerque and know the hematologist/oncologists there fairly well. There are several hematology-oncology groups in the city and at the University of New Mexico. All of them have good doctors who can give excellent care for your mother. There is a good hematolog...

Hello Will, It would be valuable for you to see a hematologist / oncologist to sort this out. Patients with light chain (AL) amyloidosis can develop atrial fibrillation and kidney disease from complications of AL amyloidosis. Dupuytren's contractures are not caused by amyloidosis. The thyroid nodes ...

Hi again Dragon 62, I cannot find anyone who specializes in amyloidosis in San Antonio (although there may well be someone). However there are physicians who specialize in amyloidosis at the M.D. Anderson Cancer Center in Houston and at the Simmons Cancer Center at UT Southwestern in Dallas. I think...

Hi Dragon, In regard to what seems to be your biggest question – Why not decrease the Revlimid dose? – most of the time, hematology / oncology doctors will treat a newly diagnosed patient or a newly relapsed patient with myeloma or AL amyloidosis for 6-12 months at a minimum. It takes that long to r...

Dear Dragon, The diagnosis of primary light chain (AL) amyloidosis is dependent on a number of tests and the history and physical examination. It can be a challenging diagnosis to make with con­fi­dence. At a minimum, patients must have a monoclonal gammopathy and a biopsy that confirms AL amyloidos...

Hello Giorgi, I am VERY sorry that your wife is having to struggle with this difficult disease. Based on the in­formation available to me in this and your earlier post, I am concerned that something – perhaps myeloma – is pushing on the brachial plexus, or that there is myelomatous involvement of th...

Erik, I am very sorry to hear that your grandmother is not doing well. You are right that many patients enjoy long remissions with treatment for multiple myeloma. Unfortunately, it is also true that some patients do not do as well. If this is your grandmother's first relapse of myeloma, I would be h...

Hello Tom, I agree with all of the replies here. There is nothing in the test results shown here that suggests to me that you have myeloma or light chain amyloidosis. Serum free light chain testing and poten­tially a 24-hour urine for Bence Jones proteinuria should be performed to completely rule ou...