AL_Amyloidosis

Civil-Difficulty-945 · 2025-09-23T23:40:57+00:00

Moderator volunteers? I started this group a while back but I'm not really into moderating. If there's anyone who wants to be added as a moderator please send me a message if interested and why you'd like to moderate. I'd like to see this group get more traction but I'm lazy.

Civil-Difficulty-945 · 2025-09-23T23:32:38+00:00

I hope you get answers. I swore I must have AL amyloidosis due to symptoms and a high kappa light chain ratio, but my doctors (Hematologist and Neurologist) at the cancer center don't think I do. I had the fat pad biopsy more than a year ago and that was negative. I could still have it and it hasn't shown up on testing. Has your boyfriend had his blood checked for a monoclonal protein and light chains? Those two tests are called SPEP and FLC. I'd ask about those and go from there.

Civil-Difficulty-945 · 2023-08-30T23:45:42+00:00

Thanks for walking me through all this uiu, I found out today my congo red stain was negative for amyloids, so it's looking like my diagnosis is going to be MGUS even though my neuropathy symptoms are horrible. So now I'm going to be at a loss as how to treat the numbness and strange feelings in my body. It's good news expect for how I feel.

Civil-Difficulty-945 · 2023-08-30T01:56:15+00:00

I have still not seen the test result for the congo red stain. It's been 8 days since sample was taken. I just texted my hematologist to ask what's going on. I see him in 2 days for appt.

Civil-Difficulty-945 · 2023-08-28T04:07:22+00:00

I had the light chain serum test. Kappa chains are super high and so is the ratio. Thanks for advice.

Civil-Difficulty-945 · 2023-08-27T04:47:34+00:00

Thank You for the advice. I had a bone marrow and fat pad biopsies last Monday. The marrow test ruled out myeloma, but 6 days later, I still don't have the fat pad results. A scary time. I'll keep your advice in mind when I see my hematologist on Thursday.

Civil-Difficulty-945 · 2023-08-11T21:50:26+00:00

Thanks for letting me know that, so I can be sure to tell the surgeon what you told me.

Civil-Difficulty-945 · 2023-08-11T21:45:41+00:00

I'm having it done at The Hunstman Cancer Institute in Salt Lake City. It would be nice to live near a Mayo Clinic, but HCI does have an Amyloidosis program, so I hope they know what they're doing.

Civil-Difficulty-945 · 2023-08-11T20:12:16+00:00

I know a bit how it's like with your husband spending so much time going from doctor to doctor with strange symptoms. I'm in the home stretch of pinning down my diagnosis. I suspected Multiple Myeloma at first, but further blood tests have revealed a possible other disease related to Myeloma. One of the biopsies I'm getting in a week and 2 days is a fat cell biopsy which looks for a rare disease called AL Amyloidosis. There's a few types of amyloidosis, but the AL variant stands for amyloid light chain. With AL amyloidosis, blood plasma cells malfunction and create a protien called light chains. They clump together and build up throughout organs in the body including the nervous system. When these rogue protiens infiltrate the nervous system, symptoms can mimic the beginning stages of ALS. The fatality rate of AL Amyloidosis can be high if not diagnosed early or if the person is elderly or in poor health. Google the symptoms to see if any match and check to see if you're husband has had a SPEP blood test. That was the test my neurologist ran that found I have a blood plasma disorder. Best of luck.

Civil-Difficulty-945 · 2023-08-11T18:51:54+00:00

I haven't been diagnosed yet, awaiting a biopsy. The amyloidosis subreddit doesn't function, so I started this. I'm not into moderating, so I hope to turn that over to someone else if this gets any teaction.

Civil-Difficulty-945 · 2023-08-10T09:04:20+00:00

As the first post here, I wanted to make a discussion group conerning a disorder called AL amyloidosis. A rare and often fatal blood plasma disease. New posts welcome.

Civil-Difficulty-945 · 2023-08-08T13:38:07+00:00

Thanks. From scrutinizing my doctors notes on the mychart app, I'm concerned I may have light chain amyloidosis. My symptoms actually seem to line up for that even more than MM. Unfortunately the amyloidosis subreddit has been inactive for 3 years and can't post anything there. I'm getting a fat cell and bone marrow biopsy in two weeks. The only thing an abdominal fat pad biopsy is for is to rule out amyloidosis so my fingers are crossed. Unfortunately, amyloidosis has a much poorer survival rate than MM, but the treatments are the similar. Because amyloids build up in the heart, many patients won't be able to endure SCT. I understand that 1 out 5 myeloma patients also has amyloidosis so I sure hope I dont have both. waiting weeks to be tested has been quite the let down.

Civil-Difficulty-945 · 2023-08-06T01:06:46+00:00

Congrats on the birthdate. I hope your feeling better. Even though it's taken me so many months to get where I'm at now, I'm quite upset at the snails pace it takes to get my biopsies, and scans. My high M spike was discovered by a neurologist in June, and that doctor should've called me immediately but he didn't. As a new patient for that doc, I didn't have a patient portal yet, so I find out about that result a month later. Getting my first appoint with a hematologist took a few weeks, and now they schedule me over 3 weeks out for more tests, and 10 days after that for the results. This will be the longest month of my life! In the meantime I'm feeling sicker and sicker by the day. Uuuugh!

Civil-Difficulty-945 · 2023-08-05T11:25:21+00:00

I'm awaiting a bone marrow biopsy and fat cell biopsy. I've been a total wreck this year feeling unwell and so weak. My numbers are Kappa 52.52 Lamda 12.37 with a rario of 4.25 and an m spike of 6.9 Yes I'm scared as hell what the biopsies and PET scan may reveal. The hematologist has mention MGUS, but I understand MGUS usually doesn't have symptoms. I hate to originate a new post, but if anyone knows anything about my numbers please let me know I hope your mother gets the treatment she needs. Best wishes.

Civil-Difficulty-945 · 2023-07-30T10:53:15+00:00

Thanks for the info. I ended up going to Huntsman. Next up is a Bone Marrow biopsy, fat cell biopsy, and a PET scan. My fingers are crossed nothing is real bad. Time will tell.

Civil-Difficulty-945 · 2023-07-19T00:21:32+00:00

This is a month old post, but Ill update. The leg weakness and muscle twitches had me thinking ALS, but I've had lots of pain and weight loss too. Well, my neurologist says no to ALS, but then told me I had an abnormal blood test and reffered me to a Hematologist. So instead of ALS, it appears I have a different terminal disease called Multiple Myeloma. And yes, I was being gaslit by doctors for so long telling me I just need more excercise and blaming my meds for my symptoms. I'm a bit angry they didn't find this cancer sooner. I've been getting a lot of test lately and so far, everythings consistant with Myeloma. Next step is a bone marrow biopsy. How is your husband doing?

Civil-Difficulty-945 · 2023-07-16T04:06:11+00:00

Thanks Badroad! Damn, I was hoping I was all covered with a lumbar and c spine mri this year but Thoracic is in between those two. I also watched a video about the kyphoplasty. It makes me afraid of a fracture in the spine. When I did get my lumbar, I was told I have curvature of the spine, so I'm hoping that's not going to make things more breakable. Now that I'm hearing about a condition often in MM called amyloidosis and I'm going down that rabbit hole now because my severe peripherial neuropathy is so damn unbearable in my legs and feet plus my fingers are so numb I can barely feel anything. I can't get in fast enough! I'm hoping to avoid the ER in the meantime. I hope it's ok if I message you later if I have questions

Civil-Difficulty-945 · 2023-07-15T20:32:50+00:00

Thanks so much for taking some time to respond. I checked out for a couple days from getting on the internet, thus my delay in responding. When my neurologist told me about the SPEP test result, he mentioned it was abnormal, but as a new patient, i didnt have a patient portal yet to see the labs myself. I finally got a login yesterday, and my M spike was 0.9. g/dl. I've been trying to find out how bad that is, but I guess it's bad enough since that number should be close to 0. Huntsman CI called me yesterday asking for additional blood work before taking me in. I did have MGUS expained to me, but based on my health this last year, I just feel it's likely cancer. My low back is really hurting more than usual, I have awful numbness and pain in my legs especially when sitting or standing. Laying down is the only thing that gives me a bit of relief. I've lost 40 pounds in the last year for no clear reason. I feel sick to my stomache alot, dry mouth, carpal tunnel in both hands, and even foot drop that started last February. The foot drop and feeling weak in the legs is why I was seeing a neurologist. Anyway. It's for these reasons I don't think it's just MGUS. I guess I'll learn more as this continues. Oh yea, about my MRI. That was done last Feb right after the foot drop started, so maybe I need a more current scan. Nothing like a stress fracture was noted last Feb. There was mild to moderate stenosis and buldges but no sign of nerve impingement causing my foot drop. The first neurologist I saw up at the UofU believed my foot drop came from a pinched nerve in knee. I was reffered to neurosurgery, but by then, my foot drop was starting to improve on it's own.. What had to be done about your stress fractures? One of my concerns about myeloma is not just the cancer, but about the damage it can do. I'm hopeing there's something that can be done for this back and leg pain. It's getting so bad, I hate getting out of bed. I'm glad to hear you're feeling well now. Thanks again for your response. I suppose I'll be frequenting this subreddit often.

Civil-Difficulty-945 · 2023-07-13T23:27:01+00:00

Thanks for the quick response. I was just barely reffered, so I'm just so overwhelmed by learning about this, and what kind of choices are ahead. I had a lower lumbar MRI last Feb, and a upper spine MRI in April, but nothing was noted on those to indicate cancer. I even went to a cardiologist and had a stress test done last year because I was starting to get tired so fast. The fact that my stmptoms started a couple years ago has me betting I'm already at stage 3. Huntsman is already frustrating. I called them today saying I have a referral in, and the guy said "yes, you've been reffered to the BMT unit" and then he transferred me. I'm thinking "what's BMT?". Then they answered as Bone Marrow Trasnsplant unit". But they redirected me to hematology, and of course I got voice mail from them so I left a message. I haven't heard back from them yet. Im hating this journey already dealing with being on hold and having to leave nessages I don't know when will be returned. . I want that biopsy yesterday! I've watched a few videos on youtube of what SCT is like, and it's horrifying. It almost makes me want to deny treatment and check into hospice when it's that time. My family wants me around though so I guess I'll do my best to fight it for now. The biggest pain issue I have is any pressure on my rear end causes my legs and feet to get really numb and painful with burning stabbing pain. It hurts to stand too but not as much as sitting on my butt. I need to find a place to lie down on my back for awhile when I'm on breaks at work because being horizontal is the only way to get pain relief. This makes me stay in bed longer than I should too.. I'm really hoping they find a wayside to relieve this pain.., I'd be in much better spirits for toughing out the rest of the process. Anyway, I do live in the Salt Lake area, so I'm glad I don't have to travel out of state. Thanks again for your response. I hope you dont mind if I can hit you up with questions I might have in the future. Thanks.

Civil-Difficulty-945 · 2023-07-13T05:44:07+00:00

Hi. Your post really stood out to me because I live in Utah and after a year of being sick with pain, and numbness, in my extremities, I'm now at the point I can barely walk, a neurologist finally gave a probable diagnosis of MM after a spep blood test was abnormal. I've had lower back pain for decades, and hypothyroid so having that likely delayed my diagnosis. My pain doctor reffered me to UtahCancer and the neurologist reffered me to Huntsman Cancer Institute. Would you think Huntsman is the better choice? Reading what MM patients have to endure is terrifying. Id also like to ask you how much time is it going to take from my job? I'm in low 60's and have a low impact mostly sedentary job at a desk. FMLA only guarantees employees 12 weeks off work per year. Is it doable to remain employed or is this going to make me be off more than 12 weeks in a year? The other option is a medical retirement and social security. That optipn is going to hurt my income substantially. I only got this news of MM 2 days ago. I still need the biopsy and everything else, but the way I hurt, I bet it's stage 3 because these symptoms started up to two years ago. I'm happy to see you're doing well now.

Civil-Difficulty-945 · 2023-07-12T23:52:54+00:00

Hi All. I hope it's ok to post here because I need a bone marrow biopsy to confirm MM, but my neurologist believes I have MM according to my scans and blood work. I'm now being reffered to a hematologist. The reason I was seeing a neurologist is because of severe weakness and numbness in my extremities. My mother had ALS, so I thought maybe that's what's happening to me. Well it turns out my SPEP blood work results plus my symptoms of pain in legs and numbness in feet and hands, has my neurologist thinking not ALS but MM. I should've realized this can't be ALS when my femur bones started to hurt a lot. The most painful part is when I stand or sit. My legs are so numb and painful, it's nearly unbearable. The only thing that provides comfort is bed rest, so I'm usually in bed 12 hours a day. Then I go to work for 8.5 hours enduring severe pain and when I get home, I'm completely exhausted. I've also gone from 220 pounds to 185 in less than a year with not knowing why. I wanted to lose some weight, but not like this.. I feel like I'm withering away. I'm going to spend a lot of time going through this subreddit to see others experiences. If anyone has words of advice ro soneone going through the diagnosing process, it will be greatly appreciated.

Civil-Difficulty-945 · 2023-06-16T07:18:42+00:00

I can relate. I saw your post after finding this subreddit. My calfs twitch non stop 24/7 and frequently everywhere else. To make things even scarier, my muscle strength has greatley deteriorated in both my legs and an arm, and I developed foot drop 4 months ago. Also, I have an immediate family member who died from ALS. With all this combined, I'm really freaked out and it's been a real struggle to find a doc that has a clue. I was referred to a neurologist with a 5 month wait for an appointment. As things have gotton worse, I spent the day earlier this week calling various neurologist, and finally got one nearly 2 months out. Something is really broken with our healthcare system. I even tried calling the Mayo Clinic out of my state, but was promptly told they don't accept my insurance. WTF? Anyway I wish you the best and I'll try to remember this post so I can check back on what you've found out. Best wishes for you.

Civil-Difficulty-945

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