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I suffer daily with extreme fatigue, lower back pain and calf pain. My legs with all this pain get so weak so I use a walker however, my hematologist said no treatment at this time. I guess it's because my bone biopsy negative and blood test negative. Does this sound right?? He said come back 6nmos. But won't it get worse by then??
6 months. No way! Change doctors.
In my case a biopsy of my kidneys showed that I had AL amyloidosis.
Thank you so much 💓
The road on Amyloidosis is so flustering! Only because it is rare and not many doctors are up on what to do, I think. If you have other doctors in your area you may want a second opinion. Sending you a hug 🤗 and best wishes….
Hello Shirley. If you have been diagnosed with amyloidosis in your heart and lungs; you have Amyloidosis and should be treated immediately. Find a hematologist/ oncologist who is recognized for treating this disease. DON’T wait. Keep us updated. We are here for support.
Your frustration is completely understandable. The symptoms you're describing - extreme fatigue, pain, and weakness - are common with amyloidosis. It's important to note that amyloidosis can affect multiple organs differently, and diagnosis can be complex because symptoms may appear for two years or more before a definitive Show Full Answer
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