Amyloidosis Care in Grand Rapids, Michigan

Amyloidosis is a group of rare diseases caused by abnormal deposits of a protein called amyloid in the body’s tissues and organs. These deposits interfere with normal organ function and can become serious or even life-threatening.

In Grand Rapids and across West Michigan, amyloidosis is most often diagnosed and managed by specialists at major health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health. Because amyloidosis is rare and complex, early referral to a specialist center in Grand Rapids is important for accurate diagnosis and treatment.

What Is Amyloidosis?

Amyloidosis occurs when certain proteins in the body misfold and clump together, forming insoluble fibrils (amyloid) that deposit in tissues. Over time, these deposits can:

  • Stiffen or thicken organs and blood vessels
  • Disrupt normal organ function
  • Lead to heart, kidney, nerve, digestive, or other system problems

Amyloidosis is more common in people over age 40, and the risk increases with age. Men are affected slightly more often than women. The exact cause is not fully understood, and research has shown no link to dietary protein intake.

Because amyloid can build up in many different organs, symptoms vary widely. In some people, there are few or no symptoms until significant damage has already occurred.

Types of Amyloidosis

Specialists in Grand Rapids classify amyloidosis based on the specific protein involved. The main types include:

AL Amyloidosis (Light Chain Amyloidosis)

  • Caused by abnormal antibody-producing cells in the bone marrow making misfolded light chain proteins
  • Often occurs on its own, but can also be associated with multiple myeloma or other plasma cell disorders
  • Commonly affects:
    • Heart
    • Kidneys
    • Liver
    • Gastrointestinal tract
    • Peripheral nerves

AA Amyloidosis (Secondary Amyloidosis)

  • Develops as a complication of chronic inflammatory or infectious diseases, such as:
    • Rheumatoid arthritis
    • Chronic infections (e.g., tuberculosis, osteomyelitis)
    • Inflammatory conditions like ankylosing spondylitis
  • Commonly affects:
    • Kidneys
    • Liver
    • Spleen
    • Adrenal glands
    • Lymph nodes

Hereditary (Familial) Amyloidosis

  • Caused by a genetic mutation (most often in the transthyretin [TTR] gene) passed down in families
  • If a parent carries the flawed gene, each child has a 50% chance of inheriting it
  • Commonly affects:
    • Peripheral nerves (numbness, tingling, weakness)
    • Nerves in the wrist (carpal tunnel syndrome)
    • Heart
    • Eyes
    • Kidneys

Hereditary amyloidosis is rare, but genetic counseling and testing are available through major Grand Rapids health systems.

Organs Commonly Affected by Amyloidosis

Amyloid can deposit almost anywhere in the body. Frequently affected areas include:

  • Heart
  • Kidneys
  • Liver and spleen
  • Nervous system (brain, peripheral nerves, autonomic nerves)
  • Digestive tract (stomach, intestines)
  • Lungs
  • Skin and soft tissues (including the tongue)
  • Eyes

Because multiple organs can be involved at once, coordinated care from cardiologists, nephrologists, neurologists, and hematologists in Grand Rapids is often needed.

Symptoms of Amyloidosis

Symptoms depend on which organs are involved and how advanced the disease is. In early stages, amyloidosis can be silent or cause vague complaints that are easy to overlook.

General Symptoms

  • Unexplained weight loss
  • Fatigue or muscular weakness
  • Swelling of the ankles and legs (oedema)
  • Shortness of breath with activity or at rest
  • Dizziness or lightheadedness, especially when standing up quickly (orthostatic hypotension)
  • Reduced exercise tolerance (which can be more noticeable during cold Grand Rapids winters)

Heart Involvement

When amyloid deposits in the heart muscle, it can cause a type of restrictive cardiomyopathy (stiff heart) and heart failure:

  • Shortness of breath
  • Swelling in legs and ankles
  • Irregular or rapid heartbeat
  • Chest discomfort
  • Fatigue with routine activities

Cardiac amyloidosis is often evaluated at specialized cardiology centers within Corewell Health or Trinity Health Grand Rapids.

Kidney Involvement

The kidneys filter waste and regulate fluid and salt balance—functions especially important during Michigan’s cold seasons when fluid shifts and blood pressure can change.

Amyloidosis can damage the kidney’s filtering units, leading to:

  • Protein in the urine (sometimes causing foamy urine)
  • Swelling in the feet, ankles, and legs
  • Rising creatinine levels (impaired kidney function)
  • Fluid retention and high blood pressure
  • Increased cholesterol levels

In advanced cases, dialysis may be needed. Nephrology services in Grand Rapids (Corewell, Metro Health, Trinity Health) provide ongoing care and dialysis support.

Nervous System Involvement

The nervous system helps coordinate all body functions. Amyloid deposits can affect both peripheral and autonomic nerves.

Common symptoms include:

  • Carpal tunnel syndrome (about 1 in 4 people with amyloidosis):
    • Numbness, tingling, or pain in the hands
    • Weak grip or dropping objects
  • “Pins and needles” or numbness in feet or hands
  • Burning pain or loss of sensation
  • Dizziness or fainting when standing
  • Digestive changes:
    • Constipation
    • Diarrhea
    • Alternating constipation and diarrhea

In the brain, some forms of amyloid buildup are associated with conditions like Alzheimer’s disease, which may have a genetic basis.

Other Possible Symptoms

  • Swollen tongue (macroglossia), which can cause snoring or sleep apnea
  • Easy bruising or purplish spots around the eyes
  • Changes in skin texture or thickening
  • Difficulty swallowing
  • Memory or concentration problems

If you notice any combination of these symptoms, especially if they are unexplained or worsening, talk to your primary care provider in Grand Rapids or request a referral to a specialist.

Amyloidosis in the Grand Rapids / West Michigan Context

Residents of Grand Rapids and West Michigan may be diagnosed with amyloidosis during evaluation for:

  • Long-standing rheumatoid arthritis or other autoimmune disease
  • Multiple myeloma or other blood cancers
  • Unexplained heart failure with a stiff heart
  • Chronic kidney disease with heavy protein loss in urine
  • Persistent carpal tunnel syndrome or nerve problems

Cold winters and variable weather in Michigan can make symptoms like shortness of breath, leg swelling, and fatigue more noticeable. Regular follow-up with local cardiology, nephrology, and neurology teams is important to adjust treatment through seasonal changes.

How Amyloidosis Is Diagnosed in Grand Rapids

Because symptoms can mimic many other conditions, amyloidosis often requires a combination of tests. In Grand Rapids, these are typically coordinated through hospital systems such as Corewell Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health.

General Tests

  • Blood tests
    • Kidney and liver function
    • Cardiac biomarkers
    • Light chain (free light chain) levels
    • Markers of inflammation
  • Urine tests
    • Protein levels
    • 24-hour urine collection for protein quantification

Biopsy Tests

Diagnosis is confirmed by finding amyloid deposits in tissue:

  • Bone marrow biopsy
    • A small sample of bone marrow is removed and examined for abnormal plasma cells and amyloid
  • Tissue (fat pad or organ) biopsy
    • A small sample of abdominal fat, rectal tissue, or affected organ (such as kidney, heart, or nerve) is taken with a needle
    • The sample is stained and examined under a microscope to identify amyloid and determine its type

Advanced imaging tests (such as echocardiograms, cardiac MRI, or nuclear scans) may also be used to assess heart involvement.

If you live in the Grand Rapids area, your primary care doctor or local clinic can coordinate these tests and refer you to a hematologist or amyloidosis specialist.

Treatment Options for Amyloidosis

There is currently no cure for most forms of amyloidosis, but treatments can:

  • Slow or stop new amyloid deposits
  • Reduce symptoms
  • Protect organ function
  • Improve quality of life and survival

Treatment in Grand Rapids is individualized based on the type of amyloidosis, organs involved, and overall health.

General Treatment Goals

  • Control or eliminate the source of abnormal protein
  • Support and protect affected organs (heart, kidneys, nerves, etc.)
  • Manage symptoms and maintain daily function

Treatment Approaches

May include:

  • Medications to slow amyloid production
    • Chemotherapy-type drugs for AL amyloidosis (similar to multiple myeloma treatments)
    • Targeted therapies or stabilizing medications for hereditary (TTR) amyloidosis
  • Treating underlying conditions
    • Aggressive management of rheumatoid arthritis or chronic infections in AA amyloidosis
  • Supportive care
    • Adequate rest and energy conservation
    • Low-salt diet for fluid retention and high blood pressure, especially if the heart or kidneys are affected
    • Diuretics (water pills) to reduce swelling
    • Medications to stabilize heart rhythm or support heart function
    • Pain medications and nerve-stabilizing drugs for neuropathy
    • Bowel medications for constipation or diarrhea
  • Dialysis
    • For advanced kidney involvement when kidney function is severely reduced
  • Transplants
    • Bone marrow (stem cell) transplant in selected AL amyloidosis patients
    • Organ transplants (such as heart, kidney, or liver) may be considered in carefully selected cases

Grand Rapids hospitals often coordinate care through multidisciplinary teams, so hematology, cardiology, nephrology, neurology, and transplant specialists can work together on a personalized treatment plan.

Living With Amyloidosis in Grand Rapids

Managing amyloidosis is a long-term process. Many people in the Grand Rapids area live active, meaningful lives with amyloidosis by:

  • Keeping regular appointments with their specialist team
  • Monitoring symptoms and reporting changes early
  • Following diet and medication plans
  • Staying active within their limits (indoor exercise options are especially helpful during Michigan winters)
  • Getting recommended vaccines to reduce infection risk

Local support resources may include:

  • Kent County Health Department – information on chronic disease management and vaccinations
  • Grand Rapids Public Health programs – community health education and support
  • Patient education and support groups offered through Corewell Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health

When to See a Doctor in Grand Rapids

Contact your doctor or an urgent care/ER in Grand Rapids if you experience:

  • Unexplained leg and ankle swelling
  • New or worsening shortness of breath
  • Rapid or irregular heartbeat
  • Persistent numbness, tingling, or burning pain in hands or feet
  • Significant unintentional weight loss
  • Foamy urine or signs of kidney problems
  • A swollen tongue or trouble swallowing

Early evaluation can lead to earlier diagnosis and better treatment options.

Key Points About Amyloidosis

  • Amyloidosis is a group of rare diseases caused by abnormal deposits of the protein amyloid in tissues and organs.
  • These insoluble proteins accumulate in cells and disrupt normal function; they can circulate in the bloodstream and cause systemic damage.
  • Types include:
    • AL amyloidosis – due to abnormal antibody-producing cells
    • AA amyloidosis – triggered by chronic inflammation, infection, or cancer
    • Hereditary (familial) amyloidosis – caused by genetic mutations
  • Common symptoms include:
    • Ankle and leg swelling
    • Fatigue and muscular weakness
    • Unexplained weight loss
    • Numbness or “pins and needles” in hands and feet
    • Diarrhea or constipation
    • Irregular heartbeat and shortness of breath
    • Swollen tongue
  • There is no cure, but treatments available in Grand Rapids aim to:
    • Prevent further amyloid deposits
    • Treat underlying conditions
    • Protect the heart, kidneys, nerves, and other organs
    • Improve quality of life

If you live in the Grand Rapids, Michigan area and are concerned about amyloidosis, start by talking with your primary care provider, and ask about referral options to specialists at Corewell Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health for comprehensive evaluation and care.