J Neurol Res

Journal of Neurology Research, ISSN 1923-2845 print, 1923-2853 online, Open Access

Article copyright, the authors; Journal compilation copyright, J Neurol Res and Elmer Press Inc

Journal website https://jnr.elmerpub.com

Original Article

Volume 16, Number 3, September 2026, pages 165-175

The Financial Burden of Amyotrophic Lateral Sclerosis Diagnosis: Estimating Costs of Unnecessary Procedural Interventions and Exclusionary Testing

↓ Figure 1. Cost estimates from study sample: diagnostic testing and unnecessary procedures. Schematic illustrating cost inputs and corresponding estimates included in the analysis, including diagnostic testing and unnecessary procedures from symptom onset to ALS diagnosis. ALS: amyotrophic lateral sclerosis.

↓ Figure 2. Distribution of procedural intervention costs per patient. Histogram showing estimated costs of unnecessary procedures prior to ALS diagnosis among patients in the cohort. Costs are reported in US dollars based on Medicare-derived estimates. ALS: amyotrophic lateral sclerosis.

↓ **Table 1.** Frequency of Diagnostic Testing: Laboratory, Imaging, Other
Laboratory testing	Frequency (proportion)
^aIncluded in cost estimate. ^bIncludes vitamins D, E, and B6, phosphorous, zinc. ^cIncludes syphilis, HIV, HTLV, West Nile virus. CT CAP: computed tomography of the chest, abdomen, and pelvis; DAT: dopamine transporter; SPEP: serum protein electrophoresis; MRI: magnetic resonance imaging.
Complete blood count (CBC)^a	127 (89%)
Comprehensive metabolic panel (CMP)^a	117 (81%)
Vitamin B12^a	115 (80%)
Thyroid-stimulating hormone (TSH)^a	111 (78%)
SPEP^a	86 (60%)
Copper^a	64 (45%)
Paraneoplastic panel^a	79 (55%)
Lyme antibodies	71 (50%)
Anti-MUSK, acetylcholine receptor antibodies^a	47 (33%)
Autoimmune panel^a	86 (57%)
Creatinine kinase^a	90 (63%)
Ganglioside^a	57 (40%)
Ceruloplasmin^a	12 (8.4%)
Hexosaminidase^a	25 (17%)
Heavy metals (urine, serum)^a	38 (27%)
Pernicious anemia cascade	6 (4.2%)
Monoclonal gammopathy	15 (10%)
Neurofilament light chain	10 (7%)
Calcium/parathyroid hormone	31 (22%)
Angiotensin converting enzyme (ACE)	16 (11%)
Vitamin/mineral deficiencies^b	64 (45%)
Infectious diseases^c	54 (52%)
Imaging
MRI brain^a	116 (81%)
MRI spinal cord^a	123 (86%)
MRI other (e.g., plexus, elbow, pelvis)	10 (6.9%)
3T brain MRI	3 (2.1%)
X-ray	12 (8.4%)
DAT scan	3 (2.1%)
CT brain, head, spinal cord	12 (8.3%)
CT myelogram	2 (1.4%)
CT full body	2 (1.4%)
CT CAP	7 (4.9%)
Angiography	2 (1.4%)
Other diagnostic testing
Genetic testing	70 (49%)
Cerebrospinal fluid analysis^a	54 (38%)

↓ Table 1. Frequency of Diagnostic Testing: Laboratory, Imaging, Other

Laboratory testing

Frequency (proportion)

^aIncluded in cost estimate. ^bIncludes vitamins D, E, and B6, phosphorous, zinc. ^cIncludes syphilis, HIV, HTLV, West Nile virus. CT CAP: computed tomography of the chest, abdomen, and pelvis; DAT: dopamine transporter; SPEP: serum protein electrophoresis; MRI: magnetic resonance imaging.

Complete blood count (CBC)^a

127 (89%)

Comprehensive metabolic panel (CMP)^a

117 (81%)

Vitamin B12^a

115 (80%)

Thyroid-stimulating hormone (TSH)^a

111 (78%)

SPEP^a

86 (60%)

Copper^a

64 (45%)

Paraneoplastic panel^a

79 (55%)

Lyme antibodies

71 (50%)

Anti-MUSK, acetylcholine receptor antibodies^a

47 (33%)

Autoimmune panel^a

86 (57%)

Creatinine kinase^a

90 (63%)

Ganglioside^a

57 (40%)

Ceruloplasmin^a

12 (8.4%)

Hexosaminidase^a

25 (17%)

Heavy metals (urine, serum)^a

38 (27%)

Pernicious anemia cascade

6 (4.2%)

Monoclonal gammopathy

15 (10%)

Neurofilament light chain

10 (7%)

Calcium/parathyroid hormone

31 (22%)

Angiotensin converting enzyme (ACE)

16 (11%)

Vitamin/mineral deficiencies^b

64 (45%)

Infectious diseases^c

54 (52%)

Imaging

MRI brain^a

116 (81%)

MRI spinal cord^a

123 (86%)

MRI other (e.g., plexus, elbow, pelvis)

10 (6.9%)

3T brain MRI

3 (2.1%)

X-ray

12 (8.4%)

DAT scan

3 (2.1%)

CT brain, head, spinal cord

12 (8.3%)

CT myelogram

2 (1.4%)

CT full body

2 (1.4%)

CT CAP

7 (4.9%)

Angiography

2 (1.4%)

Other diagnostic testing

Genetic testing

70 (49%)

Cerebrospinal fluid analysis^a

54 (38%)

↓ **Table 2.** Demographics and Sample Characteristics (n = 143)
	No-procedure group	Procedure group	Significance
Total participants (n)	100	43
Age at disease onset (mean)	57.5	59.7	P > 0.05
Male sex (n, %)	59 (59.0%)	27 (62.8%)	P > 0.05
Racial identity (n, %)
White	89 (90.8%)	39 (92.9%)	P > 0.05
Black	5 (5.1%)	2 (4.8%)	P > 0.05
Asian	4 (4.1%)	1 (2.4%)	P > 0.05
Non-Hispanic/Latino	90 (91.8%)	43 (100.0%)	P > 0.05
Onset form (n, %)
Axial	0 (0.0%)	1 (2.4%)	P > 0.05
Bulbar	20 (21.3%)	7 (17.1%)	P > 0.05
General	5 (5.3%)	2 (4.9%)	P > 0.05
Limb	69 (73.4%)	31 (75.6%)	P > 0.05
Comorbidities (n, %)
Hypertension	38 (38.0%)	21 (48.8%)	P > 0.05
Hyperlipidemia	30 (30.0%)	16 (37.2%)	P > 0.05
Asthma	10 (10.0%)	2 (4.7%)	P > 0.05
Sleep apnea	6 (6.0%)	4 (9.3%)	P > 0.05
Anxiety	15 (15.0%)	6 (14.0%)	P > 0.05
Depression	14 (14.0%)	3 (7.0%)	P > 0.05
Mortality rate (n, %)	57 (57.0%)	23 (53.5%)	P > 0.05

↓ Table 2. Demographics and Sample Characteristics (n = 143)

No-procedure group

Procedure group

Significance

Total participants (n)

100

Age at disease onset (mean)

57.5

59.7

P > 0.05

Male sex (n, %)

59 (59.0%)

27 (62.8%)

P > 0.05

Racial identity (n, %)

White

89 (90.8%)

39 (92.9%)

P > 0.05

Black

5 (5.1%)

2 (4.8%)

P > 0.05

Asian

4 (4.1%)

1 (2.4%)

P > 0.05

Non-Hispanic/Latino

90 (91.8%)

43 (100.0%)

P > 0.05

Onset form (n, %)

Axial

0 (0.0%)

1 (2.4%)

P > 0.05

Bulbar

20 (21.3%)

7 (17.1%)

P > 0.05

General

5 (5.3%)

2 (4.9%)

P > 0.05

Limb

69 (73.4%)

31 (75.6%)

P > 0.05

Comorbidities (n, %)

Hypertension

38 (38.0%)

21 (48.8%)

P > 0.05

Hyperlipidemia

30 (30.0%)

16 (37.2%)

P > 0.05

Asthma

10 (10.0%)

2 (4.7%)

P > 0.05

Sleep apnea

6 (6.0%)

4 (9.3%)

P > 0.05

Anxiety

15 (15.0%)

6 (14.0%)

P > 0.05

Depression

14 (14.0%)

3 (7.0%)

P > 0.05

Mortality rate (n, %)

57 (57.0%)

23 (53.5%)

P > 0.05

↓ **Table 3.** Frequency and Cost of Unnecessary Procedural Intervention
Procedure type: surgical	Frequency (proportion)^b	Cost (US$)
^aIntravenous or intramuscular route to the back/knee/shoulder. ^bProcedure type proportions of reported based on 143 total procedures. UNK: unknown.
Total	43 (30%)
Spinal surgery	16/43 (37%)
Spinal fusion	6/43 (14%)	Cervical: $17,956 Non-cervical: $36,318
Spinal decompression	10/43 (23%)	$14,594
Tunnel release	13/43 (30%)	Ulnar, wrist: $2,246 Ulnar, elbow: $2,441 Median, wrist: $2,276
Knee arthroplasty	9 (21%)	$13,801
Brain meningioma resection	1 (2%)	UNK
Total hip arthroplasty	1 (2%)	$15,130
Shoulder arthroplasty	1 (2%)	$3,550
Meniscus repair	1 (2%)	$3,768
Hammer toe correction	1 (2%)	$3,468
Trigger finger release	1 (2%)	$1,825
Ganglion cyst removal	1 (2%)	$1,859
Procedure type: non-surgical
Steroid injections^a	10 (23%)	UNK
Endoscopy +/- biopsy	5 (12%)	$997
Muscle biopsy, superficial	2 (5%)	$1,637
Intravenous immune globulin	2 (5%)	UNK
Cardiac catheterization	1 (2%)	$3,331
Vagal stimulation of bladder	1 (2%)	$6,812
Surgical referral
Total	37 (37/100 = 37%)	N/A
Neurosurgery	15 (15%)	N/A
Orthopedics	21 (21%)	N/A
Ear-nose-throat	6 (6%)	N/A

↓ Table 3. Frequency and Cost of Unnecessary Procedural Intervention

Procedure type: surgical

Frequency (proportion)^b

Cost (US$)

^aIntravenous or intramuscular route to the back/knee/shoulder. ^bProcedure type proportions of reported based on 143 total procedures. UNK: unknown.

Total

43 (30%)

Spinal surgery

16/43 (37%)

Spinal fusion

6/43 (14%)

Cervical: $17,956
Non-cervical: $36,318

Spinal decompression

10/43 (23%)

$14,594

Tunnel release

13/43 (30%)

Ulnar, wrist: $2,246
Ulnar, elbow: $2,441
Median, wrist: $2,276

Knee arthroplasty

9 (21%)

$13,801

Brain meningioma resection

1 (2%)

UNK

Total hip arthroplasty

1 (2%)

$15,130

Shoulder arthroplasty

1 (2%)

$3,550

Meniscus repair

1 (2%)

$3,768

Hammer toe correction

1 (2%)

$3,468

Trigger finger release

1 (2%)

$1,825

Ganglion cyst removal

1 (2%)

$1,859

Procedure type: non-surgical

Steroid injections^a

10 (23%)

UNK

Endoscopy +/- biopsy

5 (12%)

$997

Muscle biopsy, superficial

2 (5%)

$1,637

Intravenous immune globulin

2 (5%)

UNK

Cardiac catheterization

1 (2%)

$3,331

Vagal stimulation of bladder

1 (2%)

$6,812

Surgical referral

Total

37 (37/100 = 37%)

N/A

Neurosurgery

15 (15%)

N/A

Orthopedics

21 (21%)

N/A

Ear-nose-throat

6 (6%)

N/A