Diagnoses Since Onset of EMS
Introduction
This poll of persons with Eosinophilia-Myalgia Syndrome began on September
4, 2003, and ended on September 19, 2003. Twenty-six (26) individuals responded:
21 females and 5 males. Two (2) respondents live in Canada, and the remainder live
in the United States. I conducted the survey or poll entirely via the Internet, inviting
persons known by me who have EMS to send e-mail messages listing all diagnoses and
medical conditions or problems that have occurred since they contracted EMS.
I
think it's important to state that people not only listed clear diagnoses of diseases
or disorders, such as Sjogren's Syndrome or Spinal Stenosis, but also included in
their lists what might be considered general symptoms or clusters of symptoms. Examples
of the latter would include: Fatigue, Chronic Pain, Loss of Appetite, Slow Wound
Healing, and Skin Sensitivity. In other words, conditions such as those (and others)
may not be diseases in and of themselves but a symptom or result of one or more diseases,
or of medications used to treat one or more diseases, etc. However, that does not
make the symptoms any less real or troublesome.
It was hard to take numerous
diverse replies and categorize them. I decided to work with a combination of actual
body systems (such as Endocrine System) and "common sense" systems in organizing
the final list of diagnoses and disorders. Although I also included operations and
surgical procedures, I feel certain, knowing what I know about people with EMS, that
many people forgot to include some surgeries in their responses. Eventually, I finalized
a list of categories somewhat similar to that of the Questionnaire devised by a board
member of the national organization before conducting a survey of members in the
late 1990s; however, I added or subtracted from it according to my own purposes and
added additional categories.
The following diagnoses or conditions rated
30% or higher prevalence among the 26 respondents, in descending order: Muscle
Spasms (54%); Depression (46%); Fibromyalgia (42%); Muscle Pain (38%); Bronchitis
(38%); Dry Eye Syndrome (38%); Memory Loss (35%); Dry Mouth (35%); Allergies (31%);
Gastro-Esophageal Reflux Disease (31%); Fatigue (31%); High Blood Pressure (31%).
In order to have at least 31% as a score, 8 persons of the 26 had to be affected
by a problem. Fourteen (14) persons specifically listed muscle spasms.
I'm
sure that one thing people with EMS think about is cancer - might there be a higher
incidence of cancer among those with EMS? A poll like this one will not be of much
help in answering that question. Though I do know of a number of persons who have
died of cancer or have cancer at present (other than skin cancer), I deliberately
didn't ask people with serious cancer problems to participate because: 1) They are
too ill to do so, 2) It seems insensitive to even ask them when they are undergoing
chemotherapy and other treatments, fighting for their lives, and 3) I don't believe
that most would be willing to participate, unfortunately, even if able. Therefore,
you will not find here anyone who has listed any cancer diagnoses other than skin
cancer. We know that people with EMS have died of cancer (one recently died of breast
cancer), and we know that people with EMS have been diagnosed with various types
of cancer over the years including (but not limited to): lymphoma, bone cancer, breast
cancer, brain tumors, lung cancer, uterine cancer, multiple myeloma, leukemia, prostate
cancer, and others. What we don't know is how the rates compare with the general
population or with people with similar diseases and whether one or more types of
cancer may be starting to stand out as being more prevalent among EMS survivors.
After all, it's been 14-15 years (and more for a few) so cancer ought to start showing
up if it's a later manifestation or result of having EMS.
[UPDATE June
2006 concerning Cancer in persons with EMS: We still do not have a lot of information
about the real numbers of people with EMS who have had cancer or died of it, unfortunately.
Skin cancer is appearing at pretty steady rates in those with EMS just as you would
expect in the normal population. It's still my belief that lymphoma is a cancer that
persons with EMS might be suceptible to getting and in women, breast cancer rates
might be a bit higher than in the "normal" population; however we lack
data to prove it. In animal studies, mice or rats fed tryptophan developed bladder
cancer, but are people with EMS likely to get bladder cancer later in life? I don't
know and don't have any data yet. I can say that some persons with EMS seem to be
more prone to anemia, known to be associated with autoimmune diseases, and to various
red blood cell and/or white blood cell disorders. But, I don't have a good understanding
of what is going on in the persons with these problems, except for obvious cases
of anemia caused by operations, too low vitamin B-12, iron deficiency in the diet,
and other "regular" causes like these which can be fixed by taking iron
supplements or making changes in the diet - and that are more common in all persons
over age 50.
At this point in time, the majority of persons diagnosed with
EMS are over age 50. Remember the typical age (average or mean) at onset was about
age 47-49 years of age. So, as of summer 2006, it's been 17 years since the epidemic
of 1989; therefore, you can see that those persons in their late 20s, 30s, and 40s
at onset have now passed age 50 or are rapidly getting close to it. We do know there
are a few persons with EMS from tryptophan in their 30s now, some still in their
40s, and a handful or so under age 24 or so. I speak only of diagnosed persons, not
people who may have gotten EMS but were never diagnosed and have mild disease misdiagnosed
or never diagnosed.]
The people who have participated in this Poll are
asked to contact me with corrections, clarifications, and most of all - other diagnoses
as time goes on, so that this article can become an ongoing look at these persons.
For instance, if you develop Diabetes Type 2 next year, write to me, and I will add
the diagnosis and indication of year. [Note: June 2006: People have not done a
good job of updating me. I guess I should go back and re-contact them to try to find
out more.]
Finally, a disclaimer: I, Faith Rumph, a person with
EMS, do not claim to be conducting a scientific poll or survey, but an informal poll
or survey of people known by me to have EMS. The polls and surveys I do arise out
of questions I am frequently asked by people wanting to learn more about EMS and
about what others with EMS are experiencing. People are free to interpret the results
as they like. Careful observers will notice that certain diagnoses or symptoms occur
so often (such as muscle spasms) that the likelihood of those things not having
something to do with EMS seems remote. Other conditions and diagnoses cannot be attributed
with certainty to having EMS. - Marylin Faith Rumph
Poll Results
DENTAL & ORAL:
1. Gum Recession not due to Dental
Disease
2. Dry Mouth Syndrome; Dry Mouth; Dry Mouth; Dry Mouth; Dry Mouth;
Dry Mouth Syndrome; Dry Mouth Syndrome; Dry Mouth; Extremely Dry Mouth
[
The above listed by 9 persons of 26 or 35% of respondents]
3. Geographic
Tongue
4. Mouth Ulcers; Occasional Mouth Ulcers; Mouth Ulcers; Mouth
Ulcers [listed by 4 of 26 persons or 15%]
5. TMD [Jaw, Facial,
& Gum Pain, but not TMJ]; TMD
6. TMJ; TMJ; TMJ (Although TMJ comes
under the umbrella of TMD, I have chosen to list it separately.)
7. Loss of
Teeth & Many Teeth Problems; Chronic Teeth Problems
8. Dental Changes
not due to Dental Disease; Dental Changes not due to Dental Disease
9.
Inspecific Dental Disorder including Shrunken Teeth Roots, Increased Decay &
Loss of More than 15 Teeth in a Period of three years
10. Broken Teeth
(Vertically)
11. Chronically Peeling Roof of Mouth
12. Inability
to Open Mouth Enough to Fit Finger Into (probably a condition that occurred earlier
in the illness, not lately)
13. Gum Problems & Surgeries
EYES
& VISION:
1. Dry Eye Syndrome; Dry Eye Syndrome; Dry Eyes;
Dry Eye Syndrome; Dry Eyes; Dry Eye Syndrome; Dry Eye Syndrome; Dry Eye Syndrome;
Extremely Dry Eyes; Dry Eye Syndrome
[The above listed by 10 persons
of 26 or 38% of respondents]
2. Chronic Infection of the Eye
(type not specified)
3. Vision Changes; Vision Changes; Vision Changes
4.
Drooped Eyelids
5. Cataracts; Cataracts
6. Blepharitis [chronic
eye infection]; Blepharitis; Blepharitis; Blepharitis [listed by 4 of 26 persons
or 15%]
7. Optic Neuritis
8. Frequent Irritation & Hemorrhaging
of Whites of Eyes - not called "Dry Eye"
9. Dry Macular Degeneration
SKIN
& DEEP TISSUE; HAIR:
1. Scleroderma-Like Skin Changes; Scleroderma-like
Skin in some Areas; Sclerodermiform Skin; Scleroderma-Like Syndrome [listed
by 4 of 26 persons or 15% of respondents]
2. Skin Cancer; Skin
Cancer; Skin Cancer on Face (basal & squamous cell); Basal Cell Problems &
Numerous Basal Cells Removed (I believe the patient means they have had skin cancer.
I have no reason to believe any of these skin cancer diagnoses
were melanoma except the one listed further down the list.) [listed by 4 of
26 persons or 15% of respondents]
3. Alopecia on Two Small Areas
where only Telegen Hair Grows; Alopecia; Hair Loss on Scalp & Legs; Drastically
Falling Hair & Receding Hairline (of Female) [listed by 4 of 26 persons
or 15% of respondents]
4. Very Thin Discoid-Looking Spots of Skin
on Forearms & Legs that Bleed if Scratched
5. Dermatitis; Dermatitis;
Dermatitis; Dermatitis - Inflamed Skin [listed by 4 of 26 persons or 15% of
respondents]
6. Areas of Peau d'Orange Skin; Orange Peel Skin on
Hands
7. Sensitivity to Sunlight
8. Easy Bruising
9. Skin
Pain like the Flu
10. Leathery Skin with Bumps
11. Urticaria
(Hives); Hives
12. Purpura
13. Skin Rashes (not specific)
14.
Chronic Fungal Skin Infection
15. Constant Bleeding Rashes that Itch
and Hurt
16. Eczema, Only on Hands & Feet; Eczema; Occasional Eczema
17.
EMS Brown Spots
18. Severe Itching, Intermittent and Various Locations
19.
Skin Sensitivity to Everything
20. Localized Scleroderma (I interpreted
this as being actual localized scleroderma as opposed to sclerodermiform skin; however,
it's hard to be entirely sure as one can't talk to the physicians of all the people
for a Poll like this, or examine the patients.)
21. Actinic Keratoses;
Actinic Keratoses
22. Sclerosis (The patient was not able to tell me when
asked if this meant of the skin or an organ, just that she'd seen it listed on her
charts; I imagine it means sclerodermiform skin in some areas, but I am not entirely
certain.)
23. Rosacea
24. Acne
25. Dandruff or Something
like it on Scalp and in Ears - Nothing Found to Treat it
26. Pre-Melanoma Moles
27.
Cellulitis; Cellulitis
28. Advanced Skin Aging Especially Hands
29.
Fasciitis
30. Eosinophilic Fasciitis* [Also included under
Immune System; Autoimmune Diseases]
31. Dry Skin; Dry Skin
32.
Melanoma on Back (One of the persons with another type of skin cancer also
had this.)
33. Seborrheic Keratosis [This is a different type of Keratosis
from Actinic.]
PSYCHOLOGICAL:
1. Worsening Depression;
Depression; Depression; Depression; Depression; Depression; Mild Depression; Clinical
Depression (Thoughts of Suicide); Depression; Depression; Depression; Depression
[The above listed by 12 of 26 persons or 46% of respondents]
2.
Anxiety with Panic Attacks; Anxiety
3. Stress Induced Anxiety Disorder
4.
Panic Attacks; Mild Transient Panic Reactions
5. Panic Disorder; Panic
Disorder
6. Withdrawal from Social Life & Other People
7. Psychological
Counseling; Counseling
[In all, 5 persons of 26 mentioned some kind
of panic symptom, such as panic attacks; panic disorder; or panic reactions - or
19% of respondents]
IMMUNE SYSTEM; AUTOIMMUNE DISEASES:
1.
Chronic Fatigue Syndrome (CFS); CFS
2. Allergies indoor/outdoor;
Allergies to Pollens; Allergies to Medications, Pollens, Milk & Other; Food &
Drug Allergies & Intolerance; Allergies to Medications & Pollens; Allergies
to Weeds, Trees, Grasses, etc., & to Codeine; Allergic to all Milk except Skim;
Allergies to Meds & Pollens
[The above listed by 8 of 26 persons
or 31% of respondents]
3. Immune System Dysfunction
4.
Sjogren's Syndrome; Sjogren's Syndrome; Sjogren's Syndrome; Sjogren's Syndrome;
Sjogren's [listed by 5 of 26 persons or 19% of respondents]
5. Multiple
Chemical Sensitivity
6. Infections and Slow Wound Healing
7. Consistently
High White Blood Cell Count & High Eosinophils
8. Eosinophilic Fasciitis*
[Also included under Skin & Deep Tissue; Hair]
9. Diabetes Type I (Considered
a Wild Card Variety of Diabetes)
RESPIRATORY & CIRCULATORY; LYMPHATIC:
1.
Heart Attack; 2 Heart Attacks
2. Varicose Veins
3. DVT
(Deep Vein Thrombosis)
4. Coronary Artery Disease (CAD)
5. High Blood
Pressure; High Blood Pressure; High Blood Pressure; High Blood Pressure; Mild
High Blood Pressure; High Blood Pressure: High Blood Pressure from taking Prednisone;
High Blood Pressure
[The above listed by 8 of 26 persons or 31% of
respondents]
6. Frequent Sinus Infections; Frequent Sinus
Infections; Frequent Sinus Infections; Always get Sinus Infections when I get a Cold
or Flu & Need Two Rounds of Antibiotics; Sinus Infections; Sinus Infections;
Sinusitis [listed by 7 of 26 persons or 27% of respondents]
7. Bronchitis;
Occasional Bronchitis; Chronic Bronchitis; Occasional Bronchitis; Bronchitis (not
chronic); Bronchitis/Asthma; Bronchitis; Bronchitis; Bronchitis; Bronchitis
[The above listed by 10 of 26 persons or 38% of respondents]
8.
Pneumonia; Pneumonia; Pneumonia; Pneumonia; Pneumonia [listed by 5 of
26 persons or 19% of respondents]
9. Mitral Valve Prolapse
10. High
Cholesterol Levels; High Cholesterol; High Cholesterol; High Cholesterol (previously
very low); High Cholesterol; High Cholesterol; High Cholesterol [listed by
7 of 26 persons or 27% of respondents]
11. Asthma; Asthma; Asthma;
Asthma; Asthma* (with Bronchitis -Also listed under Bronchitis) [listed by
5 of 26 persons or 19% of respondents]
12. High Pulse Rate [Tachycardia];
Sinus Tachycardia
13. Ventricular Ectopy & Supraventricular Ectopy Palpitations
14.
Breathing Problems (not specified)
15. Shortness of Breath; Shortness
of Breath
16. COPD (Chronic Obstructive Pulmonary Disorder)
17. Congestive
Heart Failure (CHF)
18. Edema; Edema of Hands & Feet When Lying
Down that is Still Present in Morning
19. Pulmonary Benign Infectious Lung
Lesion (Lower Lobe of Right Lung Removed)* [Also listed under Operations]
20.
Constant Nasal Drainage
21. Interstitial Lung Disease
22. Dry
Cough
23. Impaired Flow of Lymphatic Fluid
24. Chronic Pneumonitis
First Years - None in Recent Years
25. Loss (50%) of Lung Capacity
- may be Interstitial Lung Disease, not sure
26. Cold Feet & (Sometimes)
Hands & Numb Toes, Even in Hot Summer Months [It's hard to know whether this
is a Circulatory Disorder, or whether it's something else, but it seems different
to me from those who feel hot all over or cold all over and can't get warm or cooled
down.... I put those under Miscellaneous.]
NEUROLOGICAL & COGNITIVE:
1.
Neuropathy; Peripheral Neuropathies; Nerve Pain in Legs & Feet; Occasional
Polyneuropathy of Leg (Burning); Neuropathies; Axonal Neuropathies [listed
by 6 of 26 persons or 23% of respondents]
2. Brain Fog
3.
Speech Problems
4. Memory Loss; Some Short Term Memory Loss; Memory
Loss; Memory Loss; Memory Problems; Memory Loss (various types); Memory Problems;
Short-Term Memory Problems; Short-Term Memory
[The above listed by 9
of 26 persons or 35% of respondents]
5. Abnormal Brain Scans (dead
spot on CT); Abnormal Brain Scan [Also listed under #15]
6. Bad Balance &
Falling; Loss of Balance, Falling down Stairs; Falling; Trouble with Balance;
Falls & Drops [listed by 6 of 26 persons or 23% of respondents]
7.
Searching for Words Needed to Produce a Coherent Sentence; Word Recall Problems;
Word Finding Difficulties; Memory Loss of Words* [Also included in #21]; Searching
for Words [listed by 5 of 26 persons or 19% of respondents]
8. Headaches;
Migraines; Headaches; Severe Migraines; Frequent to Almost Constant Migraines [listed
by 5 of 26 persons or 19%]
9. Restless Legs Syndrome; Restless
Legs Syndrome; Periodic Restless Legs Syndrome; Restless Legs Syndrome [listed
by 4 of 26 persons or 15%]
10. Burning of Arms & Legs [probably
neuropathy, but not specified as such]
11. Tingling Fingers & Toes in Cold
Weather & Freezing Fingers & Toes in Cold Weather
12. Cognitive
Problems; Cognitive Problems; Cognitive Problems; Cognitive Problems (Brain Injury);
Cognitive Injury [listed by 5 of 26 persons or 19%]
13. Neuritis
(nerve damage)
14. Dead Spots on Lower Legs and Arms; Dead Spot on
Thigh that Hurts or Burns & has no Feeling
15. Brain MRI shows White Matter
in Frontal Lobe much like MS - One Neurologist feels I may Have a Form
of MS; MS-Like Syndrome; MRI of Brain Revealed Findings Similar to MS or early Alzheimer's
Disease According to Neurologist, but EMS Specialist Said it was Caused by EMS &
Originated with EMS Onset
16. Tic Doloureux (Trigeminal Neuralgia) [severe
facial pain]; Trigeminal Neuralgia - Severe Pain/Numbing to Face & Scalp
17.
Truncal Ataxia
18. Notable Forgetfulness & Distraction
19.
Brain Disorders including Inner Ear & Motion Problems* [Also listed under
Ears & Hearing]
20. Thoracic Outlet Syndrome
21. Memory Loss
of Words, Meanings of Words, Faces, Names, History, Math; Difficulty Finding
my Way Around; Not Remembering What I Want to Say, What I went to Get in Another
Room, Not Remembering Whether I Read a Book or Not, & Not Being Able to Spell
[Also included in #7]
22. Dizziness (extreme for 1.5 years before osteopathic
treatment)
23. Myopathy (*any disease of muscles, but listed under NIH's
Neurological Site - Neuromuscular)
24. Brain MRI report of "Hyperintensities"
& Mastoiditis* [Latter is also listed under Ears & Hearing]
25.
Right Leg Dragging & Advanced Wearing Out of Right Shoe - No Known Name for
this at this Time
26. Drastic Altering of Handwriting Diagnosed as Part
of Neuropsychiatric Injury
27. Mitochondrial Abnormalities
28. Sciatica
29.
Carpal Tunnel Syndrome; Bilateral Carpal Tunnel Syndrome Plus C5-C6 Nerve Root
Irritation; Carpal Tunnel Syndrme [diagnosed 2003 after poll]
MUSCLES,
CONNECTIVE TISSUES, JOINTS, & BONES:
1. Muscle Pain; Myalgias;
Chronic Muscle Pain & Aches; Muscle Pain; Muscle Pain; Myalgias; Myalgia Everywhere,
Fluctuating; Muscle Pain; Muscle Aches; Muscle Pain
[The above listed
by 10 of 26 persons or 38%]
2. Muscle Spasms; Muscle Spasms;
Muscle Spasms; Muscle Spasms; Muscle Cramps, esp. Legs, Arms, & Stomach; Muscle
Spasms in Legs & Feet; Muscle Spasms; Muscle Spasms Various Locations; Muscle
Spasms, Especially Legs & Hands; Muscle Spasms; Muscles Exquisitely Tight with
Muscle Spasm; Muscle Spasms; Muscle Spasms; Muscle Spasms
[The above
listed by 14 of 26 persons or 54%]
3. Joint Contracture with Loss
of Range of Motion
4. Muscle Rigidity and Loss of Flexibility; Loss
of Flexibility; Loss of Flexibility
5. Stiffness of Joints but no Arthritis
Shown on Tests
6. Fibromyalgia; Fibromyalgia; Fibromyalgia; Fibromyalgia;
Fibromyalgia; Fibromyalgia; Fibromyalgia; Fibromyalgia Syndrome; Fibromyalgia (diagnosed
before EMS); Fibromyalgia (FMS); Fibromyalgia
[The above listed by
11 of 26 persons or 42%]
7. Muscle Tenderness all over Body;
Muscle Tenderness
8. Tendonitis in Thumb Joints; Tendonitis in Right Foot
on Side; Tendonitis - Multiple Bouts in Various Locations; Tendonitis; Tendonitis;
Tendonitis [listed by 6 of 26 persons or 23%]
9. Arthritis in
Hands
10. Muscle Weakness; Muscle Weakness; Muscle Weakness; Muscle Weakness;
Muscle Weakness; Muscle Weakness; Muscle Weakness [listed by 7 of 26 persons
or 27%]
11. Global Muscle Pain; Total Body Pain; Pain all over
Body
12. Tennis Elbow; Tennis Elbow - Came and Went;
13. Joint
Pain; Constant Joint Pain; Pains in All my Joints
14. Multiple Herniated
& Degenerated Discs of Neck & Spine; One Herniated Disc & One Torn
Disc Plus "Mild Compression of the Thecal Sac" Plus Possible "Vascular
Congestion" Plus Possible "Cord Flattening"; Herniated & Degenerated
Discs of Neck & Spine; Herniated Disc L4-L5 [Also listed under Surgical Procedures]
15.
Bone Density Test of Hip shows Very Thin Hip Bones [Didn't state it was Osteopororis,
may be Osteopenia]
16. Osteoarthritis; Osteoarthritis/Osteoarthrosis [Osteoarthrosis
is the same as osteoarthritis according to articles I read.]
17. Osteoporosis
Secondary to Long-Term Steroid Use; Osteoporosis
18. Muscle Atrophy, Especially
Legs; Muscle Degeneration (Atrophy, Shrinking, etc.)
19. Hardening in Joints,
Including Wrists & Hands
20. Scoliosis
21. Stabbing Pains in
Arms, Hands & Legs; Stabbing Pains in Arms, Hands & Legs
22. Hard
and Fibrous Areas in Calf Muscles; Hard, Fibrous Areas in Calf Muscles
23.
Frozen Shoulder; Frozen Shoulder
24. Radiculitis/Radiculopathy;
Radiculopathy
25. Osteopenia
26. Tear in Rotator Cuff (Maybe
Both)
27. Rib that Goes Out of Place & Won't Stay in Place, Causing
Severe Neck & Shoulder Pain
28. Muscle Problems (not specified)
29.
Spinal Stenosis
30. Bursitis
GASTRO-INTESTINAL:
1.
Nausea; Nausea
2. Loss of Appetite
3. Gallbladder Flares;
Gallbladder Attacks with Fibromyalgia Attacking Colon (EMS specialist assessed this);
Gallbladder stones requiring surgery [added Jan. 2004]
4. Irritable
Bowel Syndrome (IBS); IBS; IBS; IBS; IBS; IBS [listed by 6 of 26 persons
or 23%]
5. Digestive Problems; Chronic Digestive Problems; Digestive
& Colon Problems
6. GERD (Gastro-Esophageal Reflux Disease); GERD;
GERD, Reflux; GERD; GERD; GERD; GERD; Reflux - GERD
[The above listed
by 8 of 26 persons or 31%]
7. Bleeding Spots in Stomach
8.
Duodenal Ulcer
9. Hiatal Hernia; Hiatal Hernia; Hiatal Hernia
10.
Hemorrhoids; Hemorrhoids; Hemorrhoids; Hemorrhoids
11. Diverticuli
in Lower Colon
12. Chronic Diarrhea; chronic diarrhea
13. Polyps
in Colon - Benign; Colon p
olps
14. Chronic & Severe Yeast Infections of Colon & Female Organs*
[Also listed under Reproductive & Bladder]
15. Malabsorption
16.
Esophageal Spasm
17. Difficulty Swallowing at tines; Difficulty Swallowing,
especially in the early morning.
18. Loss of Sense of Taste & Sense of Smell
GENERAL
PAIN, FATIGUE, SLEEP DISORDERS, GENERAL BACK PAIN:
1. Fatigue;
Profound Fatigue; Chronic Fatigue; Chronic Fatigue; Chronic Fatigue, Low or Limited
Energy; Excessive Tiredness - Need to Take Naps; Extreme Fatigue After a Few Hours
of Activity
[The above listed by 8 of 26 persons or 31%]
2.
Low Grade Pain
3. Sleeping too few hours a night; Difficulty Sleeping;
Insomnia; Periodic Insomnia; Unable to Sleep at Night Because of Pain; Insomnia;
Difficulty going to Sleep [listed by 7 of 26 persons or 27%]
4.
Chronic Back Pain; Upper Back Pain; Back Pain/Spasms
5. Chronic Pain
(mostly in Ankles & Low Back); Chronic Pain all over Body; Chronic Pain; Chronic
Pain all over Body; Chronic Pain in Many Body Areas Designated by Physician as, in
part, Neurogenic - including Eyes, Head, Arms, Torso, Legs, Urinary Tract; Chronic
Pain Anywhere over the Whole Body [listed by 6 of 26 persons or 23%]
6.
Sleep Disorder (not specified); Sleep Disorder (not specified); Sleep Disorder
(not specified)
7. Central Sleep Apnea
8. Elevated Pain Response
and Sensitivity
9. Non-Restorative Sleep; Non-Restorative Sleep
10.
Sleep Problems - Getting to Sleep [Also listed under #3] & Waking a
Few or Hundreds of Times a Night
OPERATIONS, SURGICAL PROCEDURES,
OTHER INVASIVE TESTS, & STUDIES:
1. Hysterectomy; Hysterectomy
(*Total or not, was not specified by persons)
2. Hysterectomy (Total) for
Severe Endometriosis
3. Muscle Biopsy in Right Leg & Tissue Removed
4. Torn Meniscus Left Knee, Arthroscopy
5. Torn Meniscus Right Knee,
Arthroscopy; Arthroscopy not EMS-related to Right Knee
6. Nasal Surgery
7.
Spinal Taps
8. Myelograms
9. Five EMG's - Separate Years,
Painful; Many EMG's
10. Angiograms including one with 3 Stents in one Artery
11.
1st Cervical Spine, C6-C7 Exploded - Took 4 Hours to Clean Out
12. 2nd
Cervical Spine, T1 through T7 (?) Displacement, Cut Open All with Bone Grafts,
All Collapsing on Spine13. Gland Removed from Under Left Arm
14. Herniated
Disc L4-L5 [Also listed under Muscles, Connective Tissues, Joints & Bones]
15.
Many MRI's and CT Scans; More than 12 MRI's; Many CT Scans
16. Two Serious
Falls, Leading to Hip Replacement, Stitches over Eye, & Mild Fracture near Left
Wrist
17. Pulmonary Benign Infectious Lung Lesion - Lower Lobe of Right
Lung Removed** [Also listed under Respiratory List]
18. Outpatient Surgery
for Removal of Uterine Polyps* [Also listed under Reproductive & Bladder]
19.
Colonoscopies - more than 6; Colonoscopies
20. Sural Nerve Biopsy
21.
Endoscopies; Endoscopy
22. Upper GI Series (many)
23.
Eye Studies for Scarring from Sjogren's/Dry Eye Syndrome
24. Cognitive
Studies
25. Sleep Disorder Studies
26. Liver & Lung Studies
27.
Nerve Conduction Studies
28. Magnesium Studies at Georgetown;
Magnesium Studies
29. Surgery for Meniscus Removal (not specific)
30.
Gallbladder & Stomach Studies (how fast it empties)
31. Right Shoulder
Surgery to Remove Calcium Deposits
32. Endometrial Ablation with Laparoscopic
Observation* [Also listed under Reproductive]
33. Severe Infection of
Navel Resulting in Removal of Belly Button in 1993
34. Left Leg Biopsies
with Tissue Removal 1990 and 1991
35. Abscess of Left Leg at Present (Oct.
2003) that may Require Surgery
EARS & HEARING:
1. Year-Round
Closing Up of Ears; "Clogged" Ears Frequently
2. Fluid in Ears
4-6 Times in Past Year
3. Sensitivity to Loud Sounds
4. Ear Pain
Deep Inside - Doctors Think Where Ligaments Attach to Back of Head
5.
Inner Ear & Motion Problems* [Also listed under Neurological & Cognitive]
6.
Mastoiditis (on MRI of Brain)* [Also listed under Neurological & Cognitive]
7.
Tinnitus
REPRODUCTIVE SYSTEM & BLADDER:
1. Urinary
Incontinence; Leaky Bladder or Urinary Incontinence
2. Cystocele ["Fallen
or Dropped Bladder"]; Cystocele; Cystocele; Cystocele [listed by 4 of
26 persons or 15%]
3. Rectocele [Herniated Rectum; may be present
with Cystocele]; Rectocele; Rectocele
4. Inability to Achieve Orgasm [female]
5.
Endometriosis leading to Hysterectomy
6. Loss of Libido
7. Bladder
Infections
8. Bladder Problems & Inability to Urinate
9. Fibroid
Tumors & Loss of Blood
10. Premature Menopause
11. Lichen
Sclerosus Possibly Caused by Overactive Immune System
12. Uterine Polyps
& Outpatient Surgery for Removal* [Also listed under Operations, Surgical
Procedures, Other Invasive Procedures]
13. Chronic & Severe Yeast Infections
of Female Organs & Colon* [Also listed under Gastro-Intestinal]
14.
Peyronie's Syndrome [Male Disorder]
15. Impotence (Nerve related and/or
Diabetes related)
16. Hyperplasia of Uterus (Treated with HRT for A While)
17.
Endometrial Ablation with Laparoscopic Observation* [Also listed under Surgical
Procedures]
ENDOCRINE SYSTEM DISORDERS & DISEASES:
1.
Adrenal Exhaustion
2. Diabetes; Diabetes Type 2
3. Classic
Reactive Hypoglycemia
4. Thyroid Swings from Hyper to Hypo
FEET
DISORDERS & PROBLEMS:
1. Hammer Toes
2. Neuromas
3.
Tumors (benign)
4. Painful Callouses; Callouses
5. Recurring
Mild Spasms in Right Foot since Early 2003
6. Tendonitis of Lateral Right
Foot
7. Plantar Fasciitis in Feet; Heel Pain; Heel Spur [Experts say
Plantar Fasciitis & Heel Spurs are the same. "Heel Pain" is vague but
can be grouped here.]
9. Hallux Rigidus of Great Right Toe
BENIGN
CYSTS & TUMORS OF BODY- NOT INCLUDING FEET:
1. Cysts of Breasts,
Legs, & Arms
2. Tumors of Legs (solid benign types, fatty tumors)
3.
Benign Breast Cyst; Benign Breast Cyst; Many Cysts in Breasts & Elsewhere
4.
Fatty Tumors
5. Two Benign Breast Tumors
MISCELLANEOUS
& OTHER:
1. Sub-Normal Temperature (such that 98.6 is no longer
"normal"; 97.6 is normal and above that tends to indicate a fever)
2.
Unknown Cause(s) of Swelling in Torso Area
3. Spasmodic Dystonia (voice
weakness & tremor) [This disorder is called either Spasmodic Dysphonia or
Laryngeal Dystonia by Doctors on Internet articles. The terms are interchangeable
& are considered to be a "communication disorder" according to NIH,
where the condition is listed under the NIH division for deafness and communication
disorders.]
4. Inability to Run
5. "Paying for" Walking,
House Cleaning, etc. with Fatigue for up to a Week
6. Mononucleosis
at age 46
7. Temperature Control Disorder; Body Temperature Irregularities
- Cold & Can't Warm Up or Warm & Can't Cool Down
8. Vitamin B 12 Deficiency
9.
Great Weight Loss
10. Notable Weight Gain; 50 pounds Weight Gain from
EMS Prior to Taking Prednisone; Overweight; Weight Gain [4 of 26 persons or
15%]
11. Elevated Rheumatoid Factor
12. Bloating in Midsection,
Meaning Abdomen-Breasts-Upper Arms (I put on or take off 4%-5% of body weight
in a few days) [------Note from F Rumph: It's hard to know whether a condition
like this is lymphatic largely or what, so I put it here..... It's worth noting that
many with EMS have complained of abdominal bloating and breast enlargement since
getting EMS.]
13. Vast Weight Changes Up and Down Without Known Cause
14.
Elevated Sedimentation Rate (consistently) - from 30% to 100%