Survey of Forty EMS Patients - October 2007

Part 2

Continued from "Survey: Part 1" that contains Questions & Answers 1-6

Question 7: Part A

Have you had cancer of any type since getting EMS?

1) Yes: 7 persons of 40 respondents: 17.5%
2) No: 33 persons of 40 respondents: 82.5%

Comment: It's entirely possible this sample of patients is not representative of a larger group (cohort) of EMS patients. We can't know without asking hundreds of EMS patients, and the only way to get that kind of information is via the national organization for EMS, it would seem. I am thinking of all the persons with EMS I know of with cancer who did not participate in this survey, and I would have to wonder if the actual "yes" answer might go up to a higher percentage were more people surveyed. There are many reasons people with cancer may not participate in an informal survey like this one: 1) They are too sick 2) They don't want to divulge information that personal or 3) They may not even have computer access or be able to use a computer.
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Question: Part B (pertaining to the seven who have had cancer)

If you have had cancer, have you had a recurrence of the cancer or developed new unrelated cancer(s)?

1) Yes, I have had a recurrence of the same type of cancer: 2 respondents of 7 who have had cancer: 28.6%
2) No, I have not had a recurrence: 3 respondents of 7 who have had cancer: 42.8%
3) I have developed new cancer types: 1 respondent of 7 who have had cancer: 14.3%
4) My cancer has never gone into remission: 1 respondent of 7 who have had cancer: 14.3%

Comment: Types of cancer named included:

Breast cancer: 3 women mentioned breast cancer - all cases occurred after the year 2000.
Uterine cancer: 1 woman
Lung cancer: 1 woman
Thyroid cancer: 1 woman
Lymphoma: 1 woman (has never been in remission)
Basal Cell cancer of nose: 1 woman, 1 man
Squamous Cell Carcinoma (skin): 1 man

One woman has had four (4) types of cancer: Uterine, Breast, Lung and Thyroid - all within the past 5-6 years, I believe. Most of these cancers are more recent. The lymphoma dates back to the late 1990s.

Question 8: Part A

Do you know your total cholesterol number now (or at last test)? If you answer YES, please give the total number to within 5-10 points.

1) Yes: I know the exact number on my last test or within 5-10 points. My total cholesterol is/was:

122
130
130
152 with medication
165
170
175 with medication
180 with medication
187 with medication
Less than 200 (I allowed this response taking it to be around 180-195)
Normal (I take this to mean below 200 somewhere.)
199
204
205 with medication (281 w/out medication)
210
210 with medication
215
219
220
230
Slightly High (I have allowed this response here, taking this to mean anything from 210 to 239.)
250
250
256
261
262
320
343
350
365 with medication

Thirty (30) persons responded with numbers or descriptive phrases: 75% of 40 respondents

I am not sure that all who use medication to lower cholesterol mentioned it when giving their present total count, but some did. I made a note of those.

2) No: I do not know my total cholesterol number at present.

Eight (8) persons: 20% of 40 respondents

3) I have never had a cholesterol test: Two (2) persons: 5% of 40 respondents
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Question 8: Part B

If you remember what your total cholesterol was on a lab test prior to getting EMS, please write it here.

1) Before EMS, my cholesterol count was/or was about:

120
130
136
"Low" (I guess this could be anywhere from the 120s to 170 - but who knows?)
"Always low" (same comment as above)
144
150
158
175
179
180-230
185
185
190
"Within normal range" (I take this to mean below 200, probably 170 to 190.)
"Normal" (same comment as above)
Person only had LDL and HDL scores - 106 and 70 respectively; guessing her total was in normal range
230
243
"High" (I suppose this could be anything from 230 or 240 and higher.)
"High" (same comment as above)
250

Twenty-two (22) persons indicated a pre-EMS cholesterol total or approximate total. Obviously, people have gotten older, and cholesterol does tend to rise with age, with disease, with a more sedentary life, change in weight, etc. My guess is that most of the rest who don't recall scores or who had not been tested probably had normal or near-normal scores as they were younger and more active pre-EMS. Of the 22 persons who recalled their scores pre-EMS, all but five (5) persons had scores below 200. That's not bad at all, in my opinion.

Compared to post-EMS scores: 30 persons recall their latest score and of those only 12 have scores below 200 - or 40% of the 30 people. Some of those are taking medications to lower cholesterol, of course. Pre-EMS, 17 of the 22 people who recalled scores had a total cholesterol below 200 - or 77%. I have no idea how to compare this to the population at large. I'm not even sure how to analyze it among these persons pre- and post-EMS except to say cholesterol scores have risen, some people are using statins, and others are not able or interested in using statins.

2) I don't recall my pre-EMS score: Eleven (11) persons of 40 respondents: 27.5%

3) I wasn't tested for cholesterol pre-EMS: Seven (7) persons of 40 respondents: 17.5%
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Question 8: Part C

If you have tried a statin drug or other prescription drug (like Zetia or prescription Niacin) to reduce high cholesterol since getting EMS, did you ever stop taking the drug(s) due to adverse side effects? What effects?

1) Yes: I have stopped using a statin or other drug. List side effects if you wish.

12 persons have stopped using a drug because of adverse side effects. A few stopped a while and are resuming usage of another drug. Some persons have used many of the drugs and had problems with all of them. Zocor is the most cited drug used by those who have had problems and by those who have not noted problems.

Side effects people cited:

"Yes. Zocor: violent nightmares; Lipitor: sad dreams, depression, and it cemented my gallstones into one large one which I had to have removed with my gallbladder."
"Yes, I took Zocor, but it affected my liver enzymes."
"Yes, 4x stopped - I have stopped taking the drug 4 times due to inflammation, aches and pains. I'm on a new one - Mevachor. Don't know yet."
"I quit Zocor 2 months ago and have not been tested since; switched from Zocor to Lavistatin early summer and had increased myalgia and difficulty swallowing. Doc said to stop and I did not go back to Zocor as I felt better overall. I was just over the borderline when first using Zocor 10 years ago."
"Yes, muscle pain, elevated liver enzymes."
"Yes. [Tried] every one that was available. Always muscle pain in a few days of use...taking no statins now."
"Yes. Digestive problems; Zetia and Lipitor."
"Not taking statin due to muscle pain side effects but using another prescription drug."
"Yes, severe muscle pain with Zetia and Zocor."
"I have been on many different drugs and have stopped them due to leg pain. I am just now beginning Mevachor again as my numbers are rising again. {Person is not sure if present drug is causing effects.}

The most meaningful "stat" would be to just count those who have actually USED a drug of the 40 respondents.

***Twenty (20) persons or 50% of total respondents have USED a statin or other drug at one time or another.

Eight (8) of those 20 persons continue to use a drug although one of the eight persons is not sure if certain adverse symptoms are related or not to usage of the drug.

So, 60% (12 persons) of the 20 who've tried a drug have stopped because of side effects, and 40% (8 persons) of the respondents were using a drug at the time of this Survey [October 2007].


2) No: I use a statin or other drug and do not notice any adverse side effects. Name drug if you want.

7 persons of 40 respondents: 17.5% (are using a statin and do not notice adverse effects)


3) No: I use a statin or other drug despite the fact I think I have some adverse side effects.

1 person of 40 respondents: 2.5%

4) I have never used a statin or other drug to lower cholesterol (even if cholesterol level is not ideal.)

20 persons of 40 respondents: 50% (Some of these people have high cholesterol but do not want to take drugs and are quite strong in that decision.)

Question 9: Part A

Do you have a diagnosis of osteoporosis? (not pre-osteoporosis)

1) Yes: 14 of 40 respondents: 35% *Updated 2-18-08 (see note at end)
2) No: 23 of 40 respondents: 57.5%
3) Unsure: 3 of 40 respondents: 7.5%

Comment: This question was one that people seemed to have little trouble answering. I would guess that the three (3) persons who are unsure have never had a bone density test for osteoporosis, or for some other reason, are unsure if they have a diagnosis of osteoporosis. I think that the fact that more than 1/3 of respondents do have an osteoporosis diagnosis is significant and likely would hold up in a larger sampling of EMS patients for these reasons:

More women than men have EMS and women are more likely to have the disease.
All but 2-3% of those who got EMS were Caucasians and white women are more likely to get the disease.
Women are older now, more likely to be post-menopausal and thus more likely to get the disease.
Persons with EMS are generally not able to exercise well and would be more susceptible to the disease.
EMS patients in many cases do not eat as good a diet as healthier persons because of disability and lack of appetite, meds taken, etc., so their intake of nutrients may be deficient leading to osteoporosis.
EMS people's past history of using prednisone and certain other drugs for the disease makes them more likely to get osteoporosis as they age; some persons still use prednisone or other drugs that might affect bones.
Heredity and other factors enter the picture, also, as causes.

For example, I am a white, post-menopausal woman of short stature, lower weight, with exercise intolerance, and a mother who fractured a hip in her 70s - so I am at greater risk of the disease. EMS does not help me at all in beating the odds of getting this disease.

*On February 18, 2008, a respondent wrote to tell me she had just been diagnosed with osteoporosis after getting a back compression fracture. Last October she mentioned having had a rib fracture without cause but answered, "No," to the question about osteoporosis. I believe she didn't get osteoporosis overnight in a few months, so I am changing this stat from 13 to 14 with osteoporosis diagnoses now.
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Question 9: Part B

Have you ever broken a bone or bones without a known trauma to the bone(s)? (In other words, have you ever broken a bone and didn't have a clear-cut reason as to why or how it came to be broken; that is, you did not fall against something or drop something on a foot, or in some other way obviously injure yourself?) The person who submitted this question wanted to find out, I think, if anyone else has broken bones and not known how or why they did it. This can happen in osteoporosis and in certain other situations.

1) Yes: on one occasion only: 4 of 40 respondents: 10%
2) Yes: on more than one occasion: 2 of 40 respondents: 5%
3) No: 34 of 40 respondents: 85%
4) Unsure: 0 of 40 respondents

Respondents' Comments on breaking bones:

"Yes, on more than one occasion; each time I broke one or more ribs, despite being on several medications for osteoporosis."
"Yes, on one occasion only. I broke my humerus bone near the shoulder and tore my rotator cuff without any trauma."
"No, but have had crushed elbow and rotator cuff."
"Yes, it was a long time ago before EMS."
"I fractured a rib but was unaware until I had a chest x-ray. I do not have osteoporosis." (Has since been diagnosed with osteoporosis as of 2-18-08 after a back compression fracture.)
"Yes, I broke a bone in my foot. I have osteoporosis. Don't know how I broke it."
"Three small bones were broken on 3 separate occasions. Two times, I broke metatarsal bones on the top of my feet; and one time I broke a small ankle bone. I broke the metatarsal bones in my sleep, because the connective tissue gets tighter when I sleep, and it caused spasms so great that they broke the bones. The ankle bone broke for the same reason but broke when I stood up (when I still used crutches)."
"Yes, compression back fracture."

Question 10:

Do you have any latent or recently developed health problems that you or your doctor attribute to EMS? (The definition of "latent" is "dormant but capable of being developed" or "present but not seen until some change occurs.")

1) Yes: 15 of 40 respondents: 37.5%
2) No: 13 of 40 respondents: 32.5%
3) Unsure: 12 of 40 respondents: 30%

Comment: I think this is an excellent question but is a tad difficult for most people to fully understand. So I found some people who replied with recently developed conditions they believe related to EMS while others mentioned things going back many years. Nevertheless, I will include them all. Because this was a hard question, I think that is the reason so many answered "unsure." This is just one of those great questions sent in by someone with greater knowledge than average of terminology that some persons probably found confusing. Maybe we should have re-worded it to make it simpler. I do feel the "no" respondents, especially, really meant "no."

Respondents' replies of latent or recently developed health problems they feel are related to having EMS/other:

"Yes. Fibromyalgia, TMJ, panic and anxiety attacks, depression, collagenous colitis (inflammation of the lining of the colon, severe), ulcerative stomach, severe inflammation of the stomach lining, IBS."
"Yes. Polyglandular disease; Pancreas - Type 1 diabetes; Thyroid - hypothyroidism; Ovaries - Premature Ovarian Failure; Adrenals - Cushings Syndrome; Amyotrophic Lateral Sclerosis (ALS); COPD (Chronic Obstructive Pulmonary Disease); Unstable blood pressure (low most of the time, but spikes too high with exertion); Sjogren's syndrome; TMJ."
"Yes. I've had doctors who believe that once the eosinophils are no longer elevated that I no longer have EMS. However, I believe that the FM (Fibromyalgia) and CFS (Chronic Fatigue Syndrome) are secondary to EMS."
"No, and I am not treating EMS symptoms anyway. There is no magic bullet as I have said before."
"Yes. weakness in some muscles, limited range of motion in some joints, recurrent lower back pain. Although these developed during EMS, they have never resolved or improved and may, in fact, have worsened."
"Yes. Trouble with RXs; "possible" but not determined to be EMS-related: minor lingering paresthesias and limitations in muscle use because of fibrosis."
"Yes. Diabetes, severe skin conditions, uncontrollable weight gain, hypothyroidism, arthritis, respiratory difficulties, lack of balance which results in multiple falls and injuries."
"Yes. Fibromyalgia."
"Yes. Total loss of ability to walk."
"Yes. FM, Trigeminal Neuralgia, throat constricting, wheezing, extreme nerve pain in legs - constant, loss of strength (ability to put weight on legs and feet)."
"Yes. Kidney disease."
"Yes. Since I have a compromised immune system from EMS, and fit no other profile for breast cancer, my doctor and I blame EMS."
"Yes. Upper body pain in past several years, TMJ-like disorder, increasing mobility problems."
"Yes. CREST [type of localized scleroderma], FM, calcinosis, and lymphedema."
"Yes. Liver - I still never have even a sip of wine because after EMS it's been impossible; pancreas - I avoid most sugar because my blood sugar gets high since EMS; asthma (continuous problems since EMS); heart - still abnormal EKG's since EMS - last blood test showed "high coronary risk" from C-reactive protein; muscles still are weak and cramp often; white blood cell count continues to run high out of range although eosinophilia now in normal range; IGE immunoglobulin still very high; I get infections easily and find them difficult to get rid of; I bruise easily - a little bump or scratch turns blue."

Contact Faith at: faith_rumph@yahoo.com

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Survey of Forty EMS Patients - October 2007 Part 1
Survey of Forty EMS Patients - October 2007 Part 3

Posted February 15, 2008