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What Are Symptoms Of Systemic AL Amyloidosis?
I was fiagnosed with AL amyloidosis confined to my bladder in 2018. Recently my doctor advised it be removed which I plan to have done in a few months.
How do I know it is not in other places in my body. GP and pee doc have no clue.
Symptoms of systemic AL amyloidosis can vary widely and affect multiple parts of the body. Here are some key symptoms:
- Kidneys: Swelling in the feet and ankles, decreased urine output, frothy or… read more
What’s Your Top Survival Tip For Managing Amyloidosis In The Summer Heat?
I have no summer tips. However, in England we do not have hot summers on a regular basis.
How Robust Or Durable Are The Amyloid Proteins That Invade The Heart In The Wild Type Of Amyloidosis
Hi Richard .......you asked a very interesting and very pertinent question. I saw this yesterday but it was published on June 7 I think this year. It brings great news for some of us if we can… read more
Is Treadmill Walking Exercise A Good Thing For Amyloidosis Patients Taking Vyndamax ?
Regular exercise, including treadmill walking, can be beneficial for people with amyloidosis as it helps maintain overall health, reduces the risk of other health conditions, and improves sleep… read more
With ATTRwt If There Is Leg Weakness Does Amyloidsis Affect Muscles Or Nerves In The Leg Or In The Back Due To Spinal Stenosis.
I have had leg weakness for 7 years and had 4 level lumbar laminectamy and 2 level lumbar disc replacement/fusion. The tingling in toes stopped but did nothing for strength
I seem to be having a shorten of breath now ,stay tired all the time and have some balance issues, I have wild type ,this is all new to me,I will go through testing again in 6 months to see how it is… read more
What Do You Take For Stiffness And Pain?
For managing stiffness and pain associated with amyloidosis, consider the following options:
- Nonsteroidal Anti-Inflammatory Drugs (NSAIDs): These can help reduce inflammation and pain in the… read more
How Long Have People Lived When Taking Vyndamax?
People with hATTR amyloidosis who were treated with tafamidis (Vyndamax) have shown improved survival rates. One large study found that nearly 93 percent of people treated with tafamidis were alive… read more
Other Than My Cardiologist, What Other Specialist Should Be Seen For AL Amyloidosis?
I think I am doing well with the disease as I have just been diagnosed June of 2023. I have started Vyndamax, but read the potential for all these other issues. I think I would like confirmation if I have any other issues than my heart and the nephropathy in both feet and hands. I would like other tests to confirm issues and track changes over time.
For AL amyloidosis, in addition to your cardiologist, you should consider seeing the following specialists:
- Gastroenterologist: For issues related to the digestive system
- Hematologist: For… read more
Diagnosis Expectations
My symptoms are neuropathy, tendonitis right shoulder and left hand, constipation, nausea, enlarged tongue, heart palpitations, shortness of breath, recurrent urinary tract infections, chronic sinusitis, ankle swelling, and fatigue.
Test results
Kappa elevated, lambda normal, ratio is 17.4.
M-spike noted in serum, not seen in urine.
Bone marrow biopsy normal.
Tongue biopsy negative.
GFR has dropped from 96 to 51 in 12 months.
Cholesterol has increased from 98 to 295 in 12 months.
… read more
I know this is not an answer but a question what type of Amyloidosis do you have?Looks like some Drs don't seem to care.
Have A Diagnosis But No Visible Symptoms, What Should I Expect?
Hi. I was diagnosed with Cardiac hATTR Amyloidosis in Aug ‘22, age 52, following a DPD (PYP) scan based on family history. I am on Vindaquel ( Tafamadis) since Dec ‘22. Have had nerve conduction studies, and all looks ok. Currently being examined every 6 months for neuropathy symptoms. Anyone ever been in a similar situation and if so how did things progress for you?
Hi Roy, thanks for your reply and I'm glad to hear that you are just marginally worse over the 3 year period. The nerve conduction studies were to assist in determining if I was showing any signs of… read more
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