I've been chronicling my story at http://MyDoctorIsKillingMe.blogspot.com, and it's about being a female patient in the Veterans Medical system; it's about being a woman misdiagnosed with several major illnesses including Lupus and MS; it's about being an advocate for ALL women who are mismanaged by Health Management Organizations. We are more than numbers in a blood test, and it would be wonderful if HMO's realized that an average isn't normal for everyone. (For instance if someone offered you 2-8 slices of pizza, would you be able to eat 5- the mid range of "normal"?)
Since I was 13, I had amenorrhea, dismenorhea, clinical depression, and IBS. By the time I was 20, I was already treated for epilepsy, Lupus, Crohn's disease, Anxiety, PTSD, and had been on nearly 10 antidepressants. Over the next 24 years, medications were handed to me to "Shut me up", to "prove you're wrong", and to "test out what happens". As a result, I now have a dead thyroid gland. When I finally saw a gynecologist who agreed to test me, and learned I have Polycystic Ovarian Syndrome, we discovered the damage was complete, and I am sterile. The cysts likely had grown since I entered puberty, and is the probable cause of most of my depression, and female disorders.
In 1980, I was diagnosed as having Ehlers-Danlos syndrome by an instructor at Harvard Medical School who observed my joints in contortion as I worked at their book store. For years, I ended up with a variety of dislocations and subluxations that were mistreated with steroids and muscle relaxants. Both of these treatments further created damage to the joints. In my 40's, I was given morphine, oxycodone, and was told my pain was something "to live with" because the minor fractures left behind by the bone rubbing against bone was something that is part of Ehlers-Danlos.
It was these very pain treatments that further damaged my immune system, and I now have weight gain, without any explanation, of nearly 80 pounds- that further damages the joints. I lost 50 pounds in a matter of weeks without any change in diet or exercise, and then gained another thirty. According to the Veterans Administration, my weight is not a result of their treatments, despite the fact I had been a size 5 for a majority of my adult life, until they administered their special brand of care.
For years, no doctor would allow me to see any of my blood tests. I finally had enough when I turned 42, and found myself in a hospital with pancreatitis, sinus infections, and gallstones. I now demand my blood work documentation be handed to me before I leave any appointment. According to my tests, which doctors had told me were "normal", in the last ten years, there is a progressive increase in Estrogen, an increase in eosinophils, bilirubins, white cells, triglycerides, and sharp drops in DHEA, proteins, and oxygen levels. My prolactin jumps and drops substantially every few months, and I've been told I was menopausal from the time I was 30.
The thyroid panels showed TSH had been steadily increasing by 1-3 points per year since I started pain medications, and no one, not even a lab tech noticed that my weight had increased by 10-15 pounds PER MONTH during any treatments that involved prednisone. My body temperature has steadily gone from 98.9 to 97.1, and no one noticed. And, I have edema in my hands, feet, and face that causes so much swelling I am unable to bend fingers, or stand up. This year, I ended up with symptoms of false Pregnancy- including skin discoloration and breast milk- finally revealing a single blood test that showed my estrogen levels were three times normal range.
I researched the standard WebMd.com and wellness sites listed in search engines. I discovered Cushing's Syndrome, Polycystic disorders, and Hashimoto's through the hundreds of patient blogs. My cortisol tests kept showing "normal" range yet I was denied LIFE insurance because I had a HIGH CORTISOL level. The more I learned about Ehlers-Danlos, the more I discovered that many of the medications I faithfully took as a dutiful patient caused me more damage. Because I'm on Medicare, I risk having doctors who do NOT monitor health history, symptoms, or even health records simply because they need to follow MEDICARE guidelines. And, whenever I complain about feeling fatigue, and lack of libido, I am told I need to change my antidepressant medication. Anti-depressants, by the way, are the number one cause for decreased libido in women.
My doctors are killing me, despite an oath to "first do no harm". Since I have put my trust in their education, I have only become increasingly sicker. It wasn't until I put the effort into my own advocacy that I learned about the issues caused by ovarian cysts. It was only through my medical studies that I was able to distinguish the symptoms of Ehlers-Danlos from those of Lupus- and Fibromyalgia. Because of my research, I was able to find specialists who understand hormonal issues, and because I have kept records of the medications I was given, it was proven that prednisone caused a marked decrease in my immunity. Hashimoto's was a direct result of mismanaged health care, that relied solely on numbers on tests rather than the facts of symptoms, family history, and health history.
My hope is that all women will learn to become better advocates, and self-reliant in determining their own directions in health. I am still learning. I am still discovering. And, I found this site through that constant need to be a more alive, vital, and a human- being. I hope some of you read the blog and post your own stories to it. And, I hope I can offer assistance to others who have been tossed around by health care professionals who are given their directives from administrations that rely on bottom dollars rather than the wholeness of the mind and body.
By the end of this year, as I turn 45, I hope to finally have full control over weight, pain, and certainly the disabling illnesses which have created migraines, depression, and edema. The journey will continue on my blog, and hopefully through the friendships I gain through sites like this.
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Add a Comment14 Comments
Hello,
I too have seem to be "collecting" auto-immune diseases throughout my life.
I am 30 years old, single, no kids, diagnosed with Asthma, Heart Mummur, Scoliosis, Fibromyalgia Graves Disease, Hyper-thyroid, Hypo-thyroid (after iodine radiation therapy in 2005), been tested at least 10 times for Lupus, RA...etc etc. You know the drill. I used to be in shape, but have lost almost all muscle tone in the last year. I am almost 5'10 and weigh 160.
I giggled when you wrote the comment of how doctors think "Oh, great here is another women who watches too much oprah or mystery diagnoses." I have experienced that far too many times. The condescending response of "you found this disease on what site?" or "you saw this on what tv show?" They give you that look like "maybe you should lay off the web-md searches and make you feel like a crazy lady...I've done the "doctor shuffle" for years and years. It usually takes about 4 or 5 appointments before they essential tell me "YOU'RE FINE, YES YOU HAVE A FEW ISSUES HERE AND THERE BUT ESSENTIALLY YOU'RE HEALTHY." Which of course means that they could not figure what was wrong with me and do not have the resources to devote any further time to find out. They don't seem to realize those "few issues" are ruining my life!
Just recently I had to see a GI specialist due to many lovely stomach issues that I have been dealing with. He also specializes in Internal medicine and endocrinology. (If anyone is in San Diego, I HIGHLY recommend him and can give you his info.) Well, on my first visit he gave me what was the most in depth physical I've ever had in my life, and I've had MANY.
He sent me in for a colonoscopy/endoscopy to check rule out cancers, chron's, ulcerative colitis, ulcers, inflammation and those types of things. Well to make a long story short I woke half-way through the procedure. WIDE AWAKE. Screaming in pain as the colonoscopy tube bent its way through my intestines. The doctor gave me a second dose of anesthesia immediately and everything went black.
He said he had never in 25 years of practice had someone wake up! So this lead him to testing of EDS. So I can now add that to my list. :) It is bitter sweet to receive a diagnoses like that. Because on one hand you're symptoms are validated. It's like a feeling of "SEE, I TOLD YOU SO!" but on the other hand there is no cure. But, hopefully there are other treatment options which will be more successful than others.
Anyway, I just wanted to reach out and let you know you are not alone. And someone out there can relate to your story. If you ever need to talk feel free to email me.
I'll keep you in my prayers and send positive thoughts your way!!
_love & peace_
Kirsten Robles
January 15, 2012 - 2:04pmThis Comment
Can oh tell me the name of the doctor in San Diego? My daughter needs a specialist who understands these GI issues and the accompanying problems with EDS.
January 4, 2016 - 11:17pmThis Comment
I am praying for you and for finding your path to health!
June 6, 2009 - 5:20pmThis Comment
I have to admit that I am dumbfounded also. It is really sad when you trust someone so much to help you and they really let you down. My heart is with you.
June 6, 2009 - 9:48amThis Comment
Regardless of everything, the bottom line is EDS is not a 'designer disease' like so many currently getting a lot of attention - which means a rare disease is just becoming rarer in the eyes of a medical community which the almighty dollar means more than truly helping someone in need of their help. I have noticed time & time again, that for the doctors that do 'know of' EDS (doesn't mean that actually know it), they rather tend to sweep it entirely under the rug than have anything to do with it . . . once you see those eyes glazing over, it's a hint for you to move on to hopefully finding another doctor whom has some 'real experience' with it.
It absolutely sickening to me, that there are so many people from other countries that come to the "States" for medical treatment of difficult diseases, yet here we are sitting literally helpless staring into our own backyard & most no one could care less.
I know that if I weren't proactive, I wouldn't be getting anywhere . . . though I guess I'm getting nowhere fast now too. I have had my entire life wiped clean off of the slate for supposed spinal injuries/ conditions that have nothing to do w/ EDS (yet I say they have everything to do with the spinal instability & it's only obvious when you have a disease where all the collagen is deteriorating in your body - which was already weakened from the day you were born- that it has everything to do w/ problems the 'normal' population never has to deal with until they're old & grey.
I have lost everything, I have no quality of life & scream in pain every time I move from a spine that has collapsed, has severe spinal nerve & cord compression, etc. and now have become completely incontinent b/c of - not to mention what my immune system & autonomic system are going through or the fact that I can't feel most of my limbs, & have lost the use of many of them so far leaving me literally crippled & dependant upon my service dog & others - and I know more's to come. YET, every single specialist I have ever been to will not touch me w/ a 10 foot pole. Oh yeh, they agree I need emergency decompression surgery & my entire spine fused - but EDS is too 'scary' - so they just pump me full of narcotics & stick me w/ spinal injections 1-2x every single month (the 'average' person is only 3-4x a YEAR) - so I have NO doctor at all, except for my pain mgt dr. That's it. They just don't care to be involved - there's too many risks . . . for them ($ wise). Sickening!
I think I said it best to one doctor . . . "I thought your oath was to do no harm?" He agreed with me. "Well, your JUST LEAVING ME like this is doing exactly that - you know it & I know it - so why are you doing that?" As you can imagine, it went dead silent . . . he had no justifiable answer.
This is exactly the type of thing that happens over & over (I've been doing it for 18 yrs w/ the EDS, 4 yrs now w/ my spine. I still have no dr., nor can I find anyone that remotely knows anything about the disease. There is no cure/ treatment & they just leave it at that - always giving me that excuse. Hey, I'm not looking for a miracle worker, but I would appreciate finding just ONE doctor that would take the time to at least 'try' to help in any little way vs. sweeping it under the rug. I have been told that it takes too much time, too much effort & they don't get paid enough money for it WHEN they have plenty of other 'textbook' patients that they can see 10x as much in the same amt of time (= bigger $).
So what is left for us to do? Something needs to really be done in this country w/ the medical profession taking a bigger role in helping those 'helpless' diseases - such as EDS. Research doesn't do a damn thing, except tell us what we already know . . . I know what my symptoms are - I know the next type's symptoms are - now what? WHEN IS someone going to take a STAND so that our voices are heard? They need to refocus their priorities b/c a geneticist (the only ones who know this disease the most) isn't going to do a damn thing to help me right now while I'm suffering & watching my body rapidly & literally fall apart in front of my eyes each & every day - while all I can do is lie here helplessly.
Really, what do you do when ever doctors don't care about you? I keep pluggin' away, hoping to find that 'one' . . . but the more of these new dr.s that graduate from med school seem to be focused more on the $ than truly making a difference. Something needs to change. I don't know exactly what to do, but maybe if EDS was brought more into the public light?
Sorry guys . . . having a bad couple of weeks here. I'm not boo hooing here, it's just that I'm soooo ticked off at the blatent irresponsibility of the medical community in general when it comes to all people in URGENT need of medical care. I don't want to read anymore about EDS, I don't want to learn, etc. I know it all, I've lived it all . . . I just want some medical attention for us all - whether or not it fixes our problems isn't necessarily as meaningful as finding someone that will just TRY.
June 6, 2009 - 6:27amThis Comment
I can so relate on many levels. When I started reacting to the prednisone- the GP sent me to an endo who said, "You can't have cushings and your numbers are wrong for anything other than- you must be eating too much". I gained 14lbs in ONE week- do you know how much I'd have to eat for that to happen? When I was 89 lbs over my weight- at 3 months after the conversation- I got sent back again and he said, and I quote, "I can't do anything for you, until you stop eating." I went anorexic for almost a month. I didn't lose a pound. I had a nutritionist come to my house and "Verify" the foods in my home- yogurt was the most fattening. Mostly it was fruit and veggies. The doctor was WRONG for talking to me like an idiot.
Flash forward- THREE years later, I am down a wopping 30 lbs from the last Endo visit. I get sent again because suddenly I gain 3 lbs a day for a week. Well, THIS endo says, "the numbers are telling me nothing". How about LOOKING AT THE PATIENT? Just weird. I brought photos of me at 110, and then she looked at me like I was from Mars saying "you were much younger here" when No, I wasn't, it was just before prednisone just 3 years prior.
Okay- I gave up on their "help" and went to a GP the insurance company recommended. Within an hour she had a blood test back that read I had an autoimmune disease, the antibodies for said illness were off the charts, and it's a wonder no one did anything about it for all this time- when years of joint damage could have been prevented. She now has me on Synthroid, and although the weight seems to be an issue- at least I know she is treating me- unlike the two Endo's who were alleged experts in the field.
And yes, I agree, the Pharma community makes almost NO money from us so there is no push to help. Stem cell research would be a great big help. No money there, for us. There's a standing joke in Pharma that if they cured cancer they could go bankrupt. So, the "treat" cancer. Nice. (Read Melody Petersen's Our Daily Meds for a great book on this.)
I hear your frustration, and I hear it LOUDLY. I hear it because I feel it and I know what its like to bang your head on a wall hoping someone will hear you. Listening is a lost art- and with alleged "managed" care- we have lost the ears of doctors in lieu of billing practices. If you ever want to email me off board, [email protected]
June 6, 2009 - 9:40amThis Comment
Might sound a little 'sick', but in some ways (not all), you can also consider yourself lucky. I have had the most horrible manifestations from EDS all my life, but have always adjusted to them until . . . I woke up one morning only to have any life I've ever known completely gone forever from nothing more than just waking up.
I completely agree with the medical community in general is lacking in a generation where care is all about the almighty buck. After I was originally diagnosed w/ EDS (at the age of 14), it took me approx 18 years to ever find anyone that could medically re-confirm my diagnoses - so I had paperwork to present to all the others who obviously have zero knowledge about the disease or its devastating effects. I have never run into so many uneducated, and even unmotivated 'medical professionals' in my life. Unfortunatley for me, that was as far as I got - since it's near impossible trying to find anyone to monitor/ manage me with any sort of expertise on the disease (that they haven't gotten off of the internet - which is overly obvious once they walk in the door & start poking/ prodding). I have been actually told by dr.s that they have no time (and are actually losing money) by seeing me since I/ my history is too time consuming & they had more patients (e.g. textbook cases) that they could see in volume. It was suggested I go to a medical institution where they have more time to research, etc. & take their time - have been through several only to be told that they have absolutely no idea of what to do w/ me (surprise, surprise)
Well anyhow, that one lovely morning that was the last day of the only life I've ever known/ lived, my spine became the next victim of this no cure/ no treatment disease. Aside from the plethera of manifestations, it seems that my entire spine is rapidly degenerating - at an even faster rate than the rest of my joints, tissue, etc. So now I spend most of my days bed ridden, staring at the same 4 walls, sleeping from all the narcotics that barely even touch the chronic severe pain or staring at the stupid tv (that I absolutely cannot take anymore). Oh, did I forget to mention that the 20 different spine specialists (they usually sweep any true understanding of EDS under the rug), have all concurred that I need a full spinal fusion (from neck, down) - yet I'm inoperable due to the EDS. Nothing like a catch 22 to mix things up a bit! I am completley incotinent, have lost feeling/ use of many of my extremities, & have so many other mechanical & spinal nerve damage than I even care to think about. My autonomic system is going haywire - effecting my heart, breathing, etc., have all the fun edema, vasculits (which is another serious issue w/ most of us), etc. etc. etc. plus all sorts of actual spinal cord compression from either lax vertebrae (of the ones that haven't collapsed yet) oh, whatever . . . it is so overconsuming that I just can't even think about it anymore
But I guess my point is, it can always get worse. I know there are people out there that are even worse than me. So all we can do is just keep pluggin' away & do whatever we've got to do to get through the day - right? Sometimes I get angry when my body doesn't work the way it should, but for whatever weird reason - I never get depressed. Just keep pluggin' away - try to find that one specialists (who is God knows where) that might actually be able to do something. It is beyond frustrating, but don't ever let it get to you. Stay proactive. When they say no, you turn around and look somewhere else for the RIGHT answers.
In this day of designer diseases (e.g. the ones that everyone has turned into a lifelong cause to help), it's a real shame that other really serious & potentially life threatening diseases are so far from the minds of the medical community. We EDSers have all been through it, and keep going through it - doctors who have never heard of the disease, nevertheless know what to do w/ you while you're standing in front of them. Medicare doesn't exactly help either (know your plight there) - bad enough that I get substandard treatment b/c they don't want to pay for anything (b/c we don't fit the 'normal' mold) You just have to keep pluggin' away . . . and try your best not to let it all get to you. I always say sh*t happense, and it usually happens to me . . . but at least I'm glad that is me & not someone else that I love (who would never be able to handle it), ya know? Just keep pluggin' away & have faith that somewhere, somehow, some day you'll run into the right person who will be able to help make some difference in your life and your condition(s). That's about all any of 'us' can do.
June 3, 2009 - 7:00pmThis Comment
I'm a lupus patient (with an accompanying set of additional complications and conditions) and had been treated with prednisone early on. However, a friend of mine who was a Pediatrician strongly encouraged me against it, citing how damaging prednisone can be.
You're certainly a fighter and I'm in awe of you. I've never heard of EDS (in my world, it's a software company that my DH used to work for). You're so right about Medicare, or health insurance as a rule, not knowing what to do about treatment for diseases that don't fall within their "norm."
Besides coming here, is there a support group for EDS that you're part of?
June 3, 2009 - 7:20pmThis Comment
Yes (sorry about not logging in for the previous reply). There are some great resources online and one of them is the Canadian Ehlers Danlos Association, and the other is in the States, Ehlers-Danlos National Foundation. http://www.EDNF.org lets you read all the articles, but they had a "paid membership" option, which is on a sliding scale. Ceda has a yahoo group and uses the website seems to have disappeared. If you are on Yahoo Groups, you can search for it though.
The Mayo Clinic, the Cleveland Clinic, and there are links on the Ehlers-Danlos Wikipedia page that lead to some great doctors- http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome
Lupus is especially tough- so many doctors miss it or mistake it for MS, Fibromyalgia, or even Epstein-Barr Syndrome. I'm glad you found a doctor who was wise to the issues of Prednisone. I wish more doctors were as educated.
June 3, 2009 - 9:00pmThis Comment
You sound exactly like me 10 years ago. Exactly including the back pain. If you visit the blog, and I hope you do.. check out the story about spinal issues... pretty parallel. I am lucky that the pros caught it early. It was just the same with you though, in that when the issues started to get worse- no one thought of the EDS as the issue. Weird, huh? Thanks for your story- it means a lot to read it.
June 3, 2009 - 7:08pmThis Comment