AL Amyloidosis types and Neuropathy

Hi everyone. This is my first time posting. My father has recently been diagnosed with AL Amyloidosis, and I have a lot of barely-formed questions floating around my brain, so hopefully I'll be coherent.

His symptoms began as peripheral neuropathy about a year and a half ago. The neuropathy progressed rapidly, and baffled his doctors by its speed. A year ago, he had a spinal decompression surgery after a compressed disc was discovered, and was also found to have a copper deficiency. Both were thought to be likely causes, but both were remedied and yet the neuropathy continued to progress, "a little worse every day" according to my dad. At one point, an oncologist considered amyloidosis, and did a fat pad biopsy, but that came back negative. During an MRI, a spot was discovered on his lungs, and when he finally followed up and got it biopsied, it came back as AL type amyloidosis, which led us to suspect that Amyloidosis could be responsible for his neuropathy symptoms.

He is currently in the process of doing a lot of testing -- awaiting a bone marrow biopsy, lots of bloodwork and PET scans, trying to determine the affected systems and severity. His lung function and cardiac function tests were fine -- this truly seems to be affecting his peripheral nerves more than anything else. We live in an area that doesn't have any amyloidosis specialists nearby. His current oncologist has a handful of other patients with amyloidosis, but their symptoms are all "more typical" of amyloidosis, and the doctor is hesitant even to say that the amyloidosis is the cause of the neuropathy. He says we may know more once the BM biopsy comes back, so we are not-so-patiently waiting for that -- it's booked a couple of weeks out.

My dad is feeling very frail and overwhelmed by all of this. He went from being pretty healthy and very mobile less than two years ago to being completely wheelchair-bound at 69, with no sensation at all in his legs and hands, and varying levels of numbness affecting him even to his torso. He was devastated to hear the doctor tell him that six months of chemotherapy may "stop the progression" of his neuropathy, but that he shouldn't expect to see improvement or reversal of symptoms. He is still living more or less alone, but barely, and is worried that any intense treatment such as chemo will not be something his body can tolerate -- and he has up until now been fairly resistant to things like hiring in-home health or considering a nursing facility. He is also on a limited retirement budget and trying to stick with what medicare will cover. I share this mainly to illustrate that he feels his options are very limited, and is not an enthusiastic pursuer of treatment options and details. My sister and I have taken on managing his appointments and medical "stuff," and this latest diagnosis has us feeling in over our heads.

One thing we noticed in his bloodwork was a high (seemingly to us, anyway) IgM level, and some googling lead us to information about IgM AL Amyloidosis, particularly a study that notes that patients with this kind of Amyloidosis tend to show more lung and peripheral nerve involvement. I am curious if anyone has any experience with the IgM form of AL Amyloidosis? If so, I'd love to hear anything you can share. Our (admittedly very cursory) googling seems to suggest that the treatment for this form of amyloidosis would be different than the treatment for other AL amyloidosis patients, so if it were that, we'd definitely want to get the right treatment the first time around.

I'd love to hear from anyone who has experience with neuropathy symptoms and AL Amyloidosis. The diagnosis as a whole is overwhelming, but the neuropathy is the most burdensome part for him, and he would love anything by way of encouragement or good news that this could see any improvement.

Lastly, I'm curious about experiences with traveling to the Mayo Clinic for a second opinion. Our closest Mayo location is Jacksonville, which is a six hour drive, but seems to have some great Amyloidosis doctors. My father's tele-health neurologist, who has been a phenomenal help through all of this, recommended Mayo clinic wholeheartedly if we are able to make it work. I was told when I called that the consultations are all outpatient, and unless they felt there was an urgent need to admit him, it sounds like we'd need to find a hotel / some sort of housing arrangement out of pocket for the visit. I can't imagine what this would look like. He barely manages at home with his power chair, and has a hospital bed and bedside commode that he uses, and I have no idea if there are hotels that can accommodate this sort of thing, or how we would navigate that if he wanted to pursue a second opinion. If anyone has advice or experience with ease of traveling in similar circumstances, I'd love to hear them.

I'm sure I have other questions I've forgotten or am too tired to formulate. 🙂 Thanks for reading.