Eosinophilia- Myalgia, have you heard of this?
 

My Dr. diagnosed me with this and told me about it last night. He pronounced it 3 times so I could understand what it was.

My question is have you ever heard of this? Why is it different from Fibro and RSD. He said along with the RSD, Fibro, IC, and everything else I have I sure have my plate full.

This is the first I had heard of this and the first I knew that I had it. Just wondering if any of you know anything about it.

Thanks for the help.

Ada

I've never heard of EMS before...

I did a search and here are a couple of links that may help you out a bit...

National Eosinophilia-Myalgia Syndrome Network
http://www.nemsn.org/

Found this on WebMD:
http://www.webmd.com/a-to-z-guides/eosinophilia-myalgia

"Eosinophilia Myalgia Syndrome is associated with the ingestion of large amounts of contaminated L-tryptophan, a dietary supplement often sold in health food stores. The contaminant remains unknown. It is a disease of abrupt onset causing severe, disabling, chronic muscle pain, skin symptoms and other neurotoxic reactions . Diagnosis is not easy and depends on finding unusually high levels of eosinophils (circulating white blood cells) over a period of at least six months."


EOSINOPHILIA-MYALGIA SYNDROME
http://www.eosinophilia-myalgia.net/

Take care, I hope these help you out...even a little.
:hug:
Abbie

more...
 

with some historical perspective, it is thought that EMS occurs without
exposure to l-tryptophan. In fact the political mess, was promoted by Lilly
who did not want l-tryptophan to complete with their new highly successful
Prozac.

L-tryptophan is now available again in this country, since the summer.

http://www.nemsn.org/
and
http://www.nemsn.org/cause.htm

and this http://www.backlash.com/content/corp...len010504.html
there are interesting links within this site to click on as well.

Eosinophilia occurs in allergies, parasite infections, and other issues.
http://www.emedicine.com/med/topic685.htm

If it were I, I'd demand to know the criteria used for you.

Hi, and thanks for this.
 

I will read up on it here soon.

My daughter just called me awhile ago and told me that a friend of mine died Tuesday. I just got off the phone with her husband.

She was a Physchologist out by my other house and we had became friend about 8 years ago when she helped me through some rough times. I had her helping Dustin and just had just called me 2 weeks ago to get him back in. She was my age, 56, and had a massive heart attack. Her service is in the morning and I just don't know if I can go. It all brings back memories of Bill. She was such a good person. I am just heartbroken over this.

Ada

Ada,
I was just wondering why he made this diagnosis? What was it that decided him that it was this rather than the Fibromyalgia you already had?
Have you had a history of prolonged exposure to l-trytophen?
As there is no particular diagnostic test and the symptoms are practically those of Fibromyalgia, I am worried that he has just thrown another thing unnecessarily into the mix for you to cause more concerns than you already have.:(
take care
Tayla:hug:

Hi Everyone,
 

I just needed some time off. My plate is too full as my Dr. puts it.

I am dealing with these chest pains so I am scheduled for a heart Dr. on the 20th and a surgeon for exploratory surgery for my pelvic pain on the 22.

The kids have been trying to get moved so I have the boys a lot. They do fine but they hog the computer and my time.

I have been trying to help two people through their losses. My neighbors sister died of cancer about a month ago and we were friends and then I have talked to Carmen's husband on the phone several times but I couldn't go to the services. Too many memories.

I have been dealing with fatigue a lot lately so I have been trying to give my brain a rest.

My burn is better but I did burst another place on it today. I didn't use soap and water though.

I will try and get back into the swing of things but with this chest pain, I am trying not to get to stressed out. Yeah that's right, no stress. LOL

Thanks for the help and support.

Ada

Hi Marla,
 

Thanks for your support and help. After reading what you have gone through and are I know you can relate.

How did your test turn out. It may be on here and I have missed it. I was wondering if you were doing better.

Ada

Hi Marla,
 

Symptoms of Eosinophilia-Myalgia Syndrome (EMS)


Symptoms of EMS in its Various Stages from Acute to Chronic
Please see Bibliography at end of List



Symptoms Often Found in the Acute Phase of EMS (early months; onset)

Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently in the acute stage, though not in all persons. Also, it's possible other symptoms appeared in some persons at this point in the disease not listed here. I am not an expert. Please see references at end.

Blueball Eosinophilia (elevated levels of eosinophils, a type of white blood cell; sometimes was not tested, so was missed; may be possible that some persons got EMS but did not have eosinophilia)

Blueball Myalgia (muscle pain)

Blueball Swelling (edema) of the face or extremities or other areas of the body, such as the arms

Blueball Weight changes (gain followed by loss; or just loss; or perhaps just gain)

Blueball Hair loss (scalp and body hair; tended to grow back later though not always a complete return to normal)

Blueball Nodules under the skin (in some persons at this stage)

Blueball Low-grade fever (although some had higher fevers) and Malaise

Blueball Joint pain (mainly the large joints)

Blueball Skin rashes of various types (wide variety of types - see articles)

Blueball Skin changes (often similar to those found in Eosinophilic Fasciitis); thickening; scleroderma-like changes)

Blueball Lung problems (pulmonary hypertension; infiltrates in lungs; pneumonias; shortness of breath; cough; chest pain/tightness)

Blueball Neurological problems (numbness; tingling; burning sensations; shock-like sensations; headaches)

Blueball Cardiac abnormalities (heartbeat irregularities; more serious irregularities or disease in a few; etc.)

Blueball GI (gastro-intestinal) problems (nausea; upset stomach; acid reflux; etc.)

Blueball Abnormal Lab Tests (abnormal lab tests in some persons such as: elevated Aldolase; Leukocytosis; elevated Serum IgE; elevated Creatinine Kinase; elevated Erythrocyte Sedimentation Rate (ESR); abnormal Liver Function tests; possible abnormal Antinuclear Antibody test, in addition to Eosinophil count, etc.)

Blueball Other



Symptoms Often Found in Intermediate Stage of EMS (3-18 months after Onset)

Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently after the initial or onset stage, though not in all persons. Also, it's possible other symptoms appeared in some persons at this point in the disease not listed here. I am not an expert. Please see references at end.

Blueball Myalgia (muscle pain continued while eosinophilia usually decreased or returned to normal within 6 months or more)

Blueball Muscle cramps (spasms) of legs, feet, abdomen and other parts of the body (sometimes developed in onset phase)

Blueball Muscle weakness (became more apparent as time went on)

Blueball Numbness and other sensory/neurological abnormalities (continued from onset, some quite severe such as ascending paralysis or polyneuropathy which if it reached the diaphragm area could result in death due to paralysis of the breathing muscles; in some this severe complication took time, and in others it may have progressed quite rapidly - some persons became quadriplegics or partially paralyzed - of those some died in the first months and years - or later - and some have survived though perhaps have never been able to walk)

Blueball Cognitive changes began to appear (difficulty concentrating, finding words; short-term memory loss; etc.)

Blueball Joint pain (often continued from onset stage)

Blueball Fatigue became quite pronounced (profound) in many with EMS at this time, if not earlier

Blueball Skin changes (continued in many from onset stage, such as scleroderma-like changes)

Blueball Cough and other pulmonary symptoms (continued into next stage after onset in many persons; more serious or rare pulmonary complications included pulmonary hypertension; severe damage requiring a wait for a lung transplant; life-threatening pneumonias; embolisms; etc.)

Blueball Depression and/or anxiety (caused by having a chronic illness, though some may have had pre-existing conditions)

Blueball Cardiac complications (cardiomyopathy in rare instances; other heart problems)

Blueball Visual changes (dry eyes; tearing; loss of vision; other more serious conditions)

Blueball Migraines/headaches (continued - or developed for first time in some)

Blueball GI problems (continued in many or developed, such as acid reflux disease; trouble swallowing; esophagus problems, etc.)

Blueball Hearing changes (reported by some, such as tinnitus or ear ringing)

Blueball Facial pain/Other pain (reported in some - such as TMJ-like disorders or rarely: trigeminal neuralgia; etc.)

Blueball Other (such as a few continuing abnormal lab tests)




Symptoms/Complications/New Diagnoses in Chronic Phase (about 18 months to present)

Please remember that this list is not meant to be absolutely representative of all cases at this stage. EMS is a diverse disease which manifested in different ways in people. However, certain symptoms tended to appear frequently after the acute and intermediate phases, though not in all persons. Also, it's possible other symptoms or secondary conditions have appeared in some persons at this point in the disease not listed here. As well, some of these diagnoses may have occurred earlier than 18 months in some persons. I am not an expert. Please see references at end.

Blueball Fibromyalgia (a condition with Tender Points and other symptoms)

Blueball Chronic Fatigue Syndrome (sometimes called CFIDS)

Blueball Both FM and CFIDS (some diagnosed with both)

Blueball Hypothyroidism (low thyroid function)

Blueball More pronounced Cognitive Dysfunction (neuro-cognitive dysfunction)

Blueball Sensitivity to odors, chemicals, etc. (may have developed earlier in some; Multiple Chemical Sensitivity)

Blueball Dry Eye Syndrome (generally well-established in many by this time; dry mouth)

Blueball Sjogren's Syndrome (autoimmune disease secondary to EMS involving dry eyes and many other symptoms)

Blueball Menstrual or Reproductive Problems (various disorders and urinary problems)

Blueball Emerging Dental Disorders (pain in gums; loose teeth; gum loss; infections; autoimmune-like changes)

Blueball Psychiatric Disorders (depression; anxiety of various types including panic disorder and post traumatic stress; other)

Blueball Myofascial Pain Syndrome (or sometimes now called Chronic Myofascial Pain or CMP; Trigger Point pain)

Blueball TMJ; TMD-type disorders of face and jaws

Blueball Fairly high incidence of Diabetes (type 2) (but by no means suggesting it's an expected EMS-related development)

Blueball A tendency to higher cholesterol levels or difficulty in lowering with diet (but by no means definitely EMS-related)

Blueball Cardiac disorders (of various types; also high blood pressure; strokes; etc - hard to know how much EMS has played into accelerating development of these disorders, but undoubtedly in some persons it has played role by virtue of poor diet, inactivity due to illness, fibrosis, elevated sugar levels, diabetes, etc.)

Blueball Gastro-Esophageal Reflux Disease; Swallowing problems; Esophagus pain or problems; Lower GI problems

Blueball Pulmonary Diseases/Disorders (problems with breathing; pneumonias; asthma; recurrent bronchitis, etc.)

Blueball Fatty Tumors; Desmoid tumors (benign and rare in those with EMS); one or two cases of unusual cancerous tumors

Blueball Scleroderma-type skin disease; some actual scleroderma diagnoses (relatively few but total not known); scleroderma skin changes are by no means found in all with EMS - maybe 1/4 or 1/3 have it to some degree; tight skin)

Blueball Liver disorders (rarely - but autoimmune liver disease has been reported as well as some other liver conditions)

Blueball Gall Bladder Disease (believed to be a slightly greater incidence; a few cases on record of eosinophils in gall bladder)

Blueball Vision Problems (tearing; red eyes; problems with reading or watching TV; changed vision; optic neuritis; etc.)

Blueball Other (EMS is diverse so there could be many other things some have related to having had EMS)

Please remember that many persons with EMS have relatively few complaints today and live full lives without much pain. Some are in remission or have few symptoms of EMS. A few believe they are actually cured or free of EMS. But many (we don't know what percentage) continue to suffer from at least several problems or secondary conditions to EMS involving usually several body systems. Treatment is by symptoms, and what works for one does not necessarily work for another. Always consult your own physician for advice. Please do not read the above list of possible complications and assume you will have - for instance - gall bladder disease related to having had EMS - it has been associated with EMS in some cases only.


Bibliography (partial)

Eosinophilia-Myalgia Syndrome (lab tests, acute symptoms, etc.)

FDA/CFSAN "Dear Colleague" letter on L-Tryptophan and Eosinophilia-Myalgia Syndrome

Eosinophilic Fasciitis & Eosinophilia-Myalgia Syndrome (symptoms of each)

Unintentional Provings - Dr. P. Souk-Aloun (hard to read but lists three stages)

Current Trends Eosinophilia-Myalgia Syndrome: Follow-up Survey of Patients

Epidemiologic Notes and Reports Clinical Spectrum of Eosinophilia-Myalgia Syndrome

Questions or Comments? Write to me at
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This is the page that I found that fits the symptoms that seem to fit why he diagnosed me with this better then what some of the others say. I don't understand a lot of what causes it.

Me again,
 

I wrote a note and somehow I took it out and got the symptoms in of the EM.

Marla, I wanted to say I was glad that your test turned out ok for your heart and that the SCS does what you want it to.

Tayla, He didn't take away the Fibro diagnoses he just added the EM into the mix.

I hope you are doing ok. You disappeared for awhile and I was worried about you. Glad to see you back.

Ada

Hi Ada,

I knew he didn't take the Fibro diagnosis away I was wondering what specific thing it was that decided him on this diagnosis as there is not one specific diagnostic marker for EM and the symptoms you listed are similar for most myalgic diseases.
I would be asking him to be specific as to lump you with this diagnosis and give you more to be concerned about seems a bit stiff.
Cheers Tayla:hug:

PS- Have been absent for a multitude of reasons:(