RESEARCH SURVEY 1999: Undiagnosed Cases

Results: (BRACKETS DENOTE RESULTS IN DIAGNOSED CASES)

TOTAL NUMBER OF PARTICIPANTS	29 (18 Female, 11 Male)
Age range	37-78
Pain	100% (see accompanying notes)
Stiffness	79% (79%)
Muscle cramps / twitches / spasms	79% (81%)
Weakness	69% (82%)
Balance difficulties	52% (70%)
Numbness / tingling	83% (86%)
Bladder / bowel / sexual dysfunction	59% (68%)
Difficulty in thinking clearly / decision making / memory	52% (63%)
Depression / anxiety	66% (63%)
Sleep disturbance	69% (84%)
Increased / decreased sweating increased	52% (63%)
Heat intolerance	55% (58%)
Intermittent low grade fevers	21% (28%)
Flu-like feeling and malaise	62% (42%)
Raised ESR / white cell count	3% (14%)
Enlarged lymph nodes	14% (10%)
Joint pains	62% (72%)
Skin rashes	31% (32%)
Frequent infections	24% (20%)
Sinusitis	24% (32%)
Slow healing / tendency to scar easily	31% (29%)
Limb / generalised swelling	28% (38%)
RSD	1
Trouble swallowing	31% (27%)
Angina type chest pain (but no heart disease found)	24% (31%)
Weight gain	55% (50%)
Reduced mobility (i.e. house / chair / bed bound?)	62% (68%)
Allergies (new, e.g. multiple drug allergies)	45% (25%)
Dizziness / vertigo	38% (44%)
Dry eyes / mouth	55% (58%)
Bruising	41% (39%)
Fatigue	69% (76%)
Dental problems (tooth / gum)	31% (28%)
Low potassium	1
Abnormal blood tests	14% (13%)
Abnormal kidney function	7% (7%)
Abnormal liver enzymes	1
Osteoporosis	10% (14%)
Shortness of breath	41% (32%)
Lung problems	2 cases (10%) Multiple pulmonary emboli
Gastrointestinal problems
General	14% (41%)
IBS	24% (8%)
Visual problems	45% (45%)
(Women) Menstrual irregularities (if pre-menopausal) / early menopause / painful periods	14% (14%)

Diagnosis of:

Lupus ?	1
Raynaud’s disease	4

Other autoimmune disease

Rheumatoid Arthritis	1
Thyroiditis 2 + hypothyroid	1
Mixed connective tissue disease (MCTD)	1
non-specific inflammatory arthritis	1
Iritis	1
Diagnosis of MS	1

Other neurological diagnoses:

Epilepsy	1
Muscular dystrophy	1
Chronic Fatigue Syndrome	1

Miscellaneous conditions:

Carpal Tunnel Syndrome	1
Sarcoidosis	1
Paget’s disease (skull)	1
Erythema nodosum	1
Granuloma annulare	1
renal calculi	1
sleep apnoea	1
keratoconus + cataracts	1
cystic ovary	1

TOTAL NUMBER OF RESPONDENTS: 29

AGE GROUPS:

30-40	4
40-50	12
50-60	7
60-70	4
70-80	2

GENDER

MALE	11
FEMALE	8

LEVEL OF LESION(S)

LUMBAR	20
THORACIC	4
CERVICAL	7
CRANIAL	3

RISK FACTORS:

TRAUMA	2
STENOSIS	6
SPINAL SURGERY	16
OIL-BASED MYELOGRAM	6
WATER-BASED MYELOGRAM	11
UNSPECIFIED MYELOGRAM	2
SPINAL / EPIDURAL ANAESTHETIC	3
EPIDURAL STEROID INJECTION	14
MENINGITIS (including chemical)	4
LUMBAR PUNCTURE	1
SUBARACHNOID HAEMORRHAGE	1
TUMOUR (brain)	1
DURAL TEAR / PUNCTURE/CSF LEAK	4
LUMBAR SYMPATHETIC BLOCK	1

MISCELLANEOUS ASSOCIATED CONDITIONS

CONGENITAL ABNORMALITY (SPINAL)	1
SCHEUERMANN’S DISEASE	1
SPINA BIFIDA OCCULTA	1
PAGET’S DISEASE IN SKULL	1
EPILEPSY	1
MUSCULAR DYSTROPHY	1
PREVIOUS SERIOUS VIRAL INFECTION (EBV, HEPATITIS, ETC.)	2
POLIOMYELITIS	1
SPINAL FUNGAL INFECTION	1
OTHER INFECTION:
CHLAMYDIA	1
E.COLI 0157	1

DIAGNOSES:

FAILED BACK SURGERY SYNDROME	3
EPIDURAL/POST-OPERATIVE FIBROSIS	3
MS	1
CFS	1
FMS	3
NEUROGENIC PAIN	1
RSD	1

MEDICATION:

OPIATES	16 (55%)
ANTI-INFLAMMATORY	8 (28%)
ANTIDEPRESSANT	12 (41%)
ANTICONVULSANT (e.g. Tegretol)	6 (21%)
MUSCLE RELAXANT	2
BENZODIAZEPINE	3

COMMENTS:

The majority of respondents felt that they in fact have arachnoiditis but have been unable to get a diagnosis. In some cases, they have been trying for years and have been left without any diagnosis whatsoever.

The results demonstrate the similarity of the symptoms to those of diagnosed arachnoiditis cases; however, it must be acknowledged that many of the symptoms are non-specific. Obviously, further investigation (examination and tests) is not possible in this postal survey, but it might be of considerable use in future research.

Note that the risk factors were the criteria for inclusion in the survey, not just the symptomatology.

Table of Contents

Introduction
Results: Epidemiology
Results: Symptoms / Signs
Summary
Thyroid Problems
RESEARCH SURVEY 1999: Undiagnosed Cases