Referral: Medicaid, Fibro, EDS, PTSD...

[Medame]

You have 'EDS" right?

Where did you get your MD, and perform your fellowship?

You're dodging the question by hiding behind your diploma.

---

Members don't see this ad.

 

[Medame]

You're dodging the question by hiding behind your diploma.

Ad hominem. Look it up.

 

[DrCommonSense]

Incorrect. Just today discussed EDS with a Hopkins rheumatologist who indicated that it was not her area of expertise, that it was not a rheumatologist's job to dx. While this is clearly false, the fact remains that many rheumatologists are not educated on all heritable connective tissue disorders.

On average, a consult with a geneticist will yield the most *informed* feedback, but as the most common form of EDS (III) is not subject to genetic testing, and as genetics as a field is of course excessively diverse, *and* as EDS is a syndrome and hence will manifest differently in each case, patients are frequently left to "fend for themselves" medically.

Also on average, such a realization would induce some measure of compassion from the attending physician. Perhaps one whose ears were bigger than his ego.

I have literally NEVER see ANYWHERE that 1/2 of fibro patients have EDS (even by clowns like Claw who makes a living being a consultant ***** for Pfizer pushing a fake disease).

Do you have any documentation of this?

 

[Medame]

The underpinning of a fibro dx is that there is nothing else to explain the pain - not the case when a patient has EDS.

I hear you, but fibro is characterized by specific symptoms which 1. are not present in all EDS patients and 2. can be present apart from an EDS dx. Hence I have qualms about dismissing it entirely when n EDS dx has been made.

 

[medzeb]

That disease can be readily diagnosed by a Rheumatology colleague.

Ergo, that shouldn't be an issue.

Incorrect -- EDS is diagnosed by a geneticist. It could be diagnosed by a rheumie but usually is not as they do not generally have EDS on their radar and most are not up to date on the diagnostic criteria.

 

[DrCommonSense]

As an Ehlers Danlos patient and advocate, I'm glad you're reaching out for more ideas. However, I'm throughly disgusted to see the many heartless. ignorant responses by doctors who clearly know nothing about EDS and who clearly don't care about the patient's pain. Just extraordinary. These doctors should quit or be fired, immediately.

Narcotics are part of the standard of care for EDS patients, as a last resort, and enable many of these patients to have a better quality of life. Failure to treat pain has led many EDS patients to end their own lives.

Wide spread pain is a prominent manifestation of EDS.

I'm not qualified to give medication advice but want to add that skilled physical therapy can be very helpful. I write 'skilled' because in the wrong hands, PT can worsen an EDS patient's condition. A program like the Muldowney protocol, which was specifically designed for EDS patients, has helped many. Aqua therapy is great too. Strengthening core muscles is a MUST as is myofascial release.

Vitamin deficiencies are common with EDS - low iron/ferritin caused all sorts of problems for me. I now make sure to keep my ferritin over 50 and this has helped a number of symptoms such as fatigue, a 'down' mood', abolished my RLS and even improved my pain score. Frank deficiency isn't even necessary to provoke symptoms, optimize levels for the best results. I've been getting IV iron since 2011 - total game changer. Low VitD also contributes to pain. It's too bad the role of nutrition is so overlooked.

Also, many EDS patients suffer with insomnia and sleep apnea, worth checking for as poor sleep hygeine can certainly impact pain and keep us in a vicious cycle.

Other good advice below, such as checking for Craniocervical instability etc. The role of an excellent orthopedist in invaluable asset for the EDS patient but as most are not educated on EDS, it's hard to find the right sort of help.


Going forward, I recommend reviewing:





Please don't give up on this patient. As you can see from the uncaring comments here, it's very possible you're this patient's last shred of hope.

Dude you should work for Oregon Health Services.

You would be a perfect fit for their board.

Just pay me 300K/year with 200K/pension to run the fibro clinic and I'll just prescribe acupuncture, Lyrica, CBT, Chiropractic and massage for this "disease".

Maybe even a little thai chai thrown in as well! Should get these people working and gainfully employed in no time!

 

[Medame]

I have literally NEVER see ANYWHERE that 1/2 of fibro patients have EDS (even by clowns like Claw who makes a living being a consultant ***** for Pfizer pushing a fake disease).

Do you have any documentation of this?

Wasn't me, Doc. Check the thread.

 

[DrCommonSense]

And I bet you're allergic to empathy and compassion.

Are you all the same poster with different screen names?

Funny how three people who NEVER posted here before all of a sudden start posting profusely on this subject making bold proclamations with zero evidence.

 

[Medame]

Are you all the same poster with different screen names?

Funny how three people who NEVER posted here before all of a sudden start posting profusely on this subject making bold proclamations with zero evidence.

Yes. And I contradict, and argue with myself.

Please pay more attention to your patients than you do to the threads on which you post.

 

[DrCommonSense]

Yes. And I contradict, and argue with myself.

Please pay more attention to your patients than you do to the threads on which you post.

You "guys" (likely one person with three screen names) make less sense than 101N. That actually takes work.

Bravo on that accomplishment though.

I suggest making an EDS clinic in Oregon that treats "fibro" with chiropractic, acupuncture, massage, CBT and Lyrica. That will get all these people off disability ASAP and make them productive citizens of the society.

Think about the huge money the government will save with this program!

 

[Medame]

You "guys" (likely one person with three screen names) make less sense than 101N. That actually takes work.

Bravo on that accomplishment though.

I suggest making an EDS clinic in Oregon that treats "fibro" with chiropractic, acupuncture, massage, CBT and Lyrica. That will get all these people off disability ASAP and make them productive citizens of the society.

Think about the huge money the government will save with this program!

Your statement about our singular identity is approximately as factual and relevant as the majority of your other "observations" on this thread. And regarding making sense...if you need something clarified--one of *my* posts, that is--feel free to point out exactly what it is that you're unclear on.

 

[medzeb]

It's clear that a lot of fibro patients consider EDS to be their new mystery dx. Nope, it's still fibro.

I've always valued doctors for their ability to think objectively so seeing subjective, sweeping generalizations like this is very telling and quite likely how you treat patients -- with a broad brush.

You wouldn't know if this is what fibro patients are thinking as you're only guessing while making meaningless, defensive comments to camouflage your lack of relevant knowledge.

EDS is diagnosed by a geneticist - all but one type can be validated via laboratory testing.

Oprah Winfrey stated that the generations of racists must simply die out, so must the generations of paternalistic, narcissistic and egotistical doctors.
Thank God a new wave of millennial doctors who value patients and view the doctor/patient relationship as a partnership is underway.

 

[DrCommonSense]

Your statement about our singular identity is approximately as factual and relevant as the majority of your other "observations" on this thread. And regarding making sense...if you need something clarified--one of *my* posts, that is--feel free to point out exactly what it is that you're unclear on.

I am unclear about you showing in ANY medical literature that "one half of fibro patients have EDS that hasn't been diagnosed".

Please provide such a reference.

 

[DrCommonSense]

I've always valued doctors for their ability to think objectively so seeing subjective, sweeping generalizations like this is very telling and quite likely how you treat patients -- with a broad brush.

You wouldn't know if this is what fibro patients are thinking as you're only guessing while making meaningless, defensive comments to camouflage your lack of relevant knowledge.

EDS is diagnosed by a geneticist - all but one type can be validated via laboratory testing.

Oprah Winfrey stated that the generations of racists must simply die out, so must the generations of paternalistic, narcissistic and egotistical doctors.
Thank God a new wave of millennial doctors who value patients and view the doctor/patient relationship as a partnership is underway.

Oprah Winfrey is a GED graduate with zero formal education that appeals to middle aged obese women that are largely housewives/unemployed making them "feel good about themselves".

I don't think she is high on my list of people I would look to medical advice for. The only person worse would be "Dr" Oz

 

[medzeb]

Oprah Winfrey is a GED graduate with zero formal education that appeals to middle aged obese women that are largely housewives/unemployed making them "feel good about themselves".

I don't think she is high on my list of people I would look to medical advice for. The only person worse would be "Dr" Oz

You're totally missing the point. Why is that not surprising?

 

[DrCommonSense]

You're totally missing the point. Why is that not surprising?

My point is actually quite valid.

Please provide references other than "Oprah" for this EDS theory you people are proposing.

 

[Medame]

I am unclear about you showing in ANY medical literature that "one half of fibro patients have EDS that hasn't been diagnosed".

Please provide such a reference.

And again with the not-reading-the-thread thing.

 

[DrCommonSense]

And again with the not-reading-the-thread thing.

So what are you saying exactly instead of just quoting Oprah and some nonsensical ramblings about "racism" and "egotistical" stuff.

Are you sure you don't have a women's studies degree and live in Portland Oregon? You would fit right in there!

 

[Kisforpotassium]

I have literally NEVER see ANYWHERE that 1/2 of fibro patients have EDS (even by clowns like Claw who makes a living being a consultant ***** for Pfizer pushing a fake disease).

Do you have any documentation of this?

I explained the study in a previous post, I just don't have time to search pubmed right now to find it but here is something that explains one of the studies http://www.the-rheumatologist.org/article/function-despite-pain/. Dr. Claire Francomano also cited this figure in her keynote speech at the EDNF conference in 2015, she is the director of the EDNF clinical research center. Most of the EDS patients she's seen received a fibro misdiagnosis before finding her. The time you all have to argue with each other is quite astounding. You wont see pharma reps pushing anything to do with EDS because all the drugs to help it are generic, like h1 and h2 blockers and cromolyn sodium. They really do help patients pain because they can stop the inflammatory cascade of degranulating mast cells. This is how the internet works I guess, you pick one thing like prevalence that doesn't even matter so much, instead of focusing on the treatment options I suggested that WORK for patients and are benign. Great lecture for physicians to watch regarding 'pain' and 'allergies' in EDS with ideas on how to treat if you actually want to help patients instead of mock them.

 

[medzeb]

My point is actually quite valid.

Please provide references other than "Oprah" for this EDS theory you people are proposing.

Oprah has nothing to do with any EDS theory. Her theory that outdated, unhelpful, closed attitudes will simply have to die out also applies to medicine.

 

[medzeb]

So what are you saying exactly instead of just quoting Oprah and some nonsensical ramblings about "racism" and "egotistical" stuff.

Are you sure you don't have a women's studies degree and live in Portland Oregon? You would fit right in there!

Gee gads, let's all hope you are close to retirement.

 

[Medame]

So what are you saying exactly instead of just quoting Oprah and some nonsensical ramblings about "racism" and "egotistical" stuff.

Are you sure you don't have a women's studies degree and live in Portland Oregon? You would fit right in there!

Good grief. I am stymied, both by your inability to read what *I* actually type, and by the fact that I my traditionally-compassionate mindset has taken a backseat to having the last word/putting you in your place. DCS, I cannot respect your arrogant, condescending, type-before-you-think attitude, but I apologize for belittling you in return. I hope you enjoy ythe rest of your night. I'm bowing out.

 

[DrCommonSense]

I explained the study in a previous post, I just don't have time to search pubmed right now to find it. Dr. Claire Francomano also cited this figure in her keynote speech at the EDNF conference in 2015, she is the director of the EDNF clinical research center. Most of the EDS patients she's seen received a fibro misdiagnosis before finding her. The time you all have to argue with each other is quite astounding. You wont see pharma reps pushing anything to do with EDS because all the drugs to help it are generic, like h1 and h2 blockers and cromolyn sodium. They really do help patients pain because they can stop the inflammatory cascade of degranulating mast cells. This is how the internet works I guess, you pick one thing like prevalence that doesn't even matter so much, instead of focusing on the treatment options I suggested that WORK for patients and are benign. Great lecture for physicians to watch regarding 'pain' and 'allergies' in EDS with ideas on how to treat if you actually want to help patients instead of mock them.

That is some LONG video.

Which part of the video shows that "1/2 of fibro patients have EDS" with citations. Thats all I need to know.

 

[medzeb]

Good grief. I am stymied, both by your inability to read what *I* actually type, and by the fact that I my traditionally-compassionate mindset has taken a backseat to having the last word/putting you in your place. DCS, I cannot respect your arrogant, condescending, type-before-you-think attitude, but I apologize for belittling you in return. I hope you enjoy ythe rest of your night. I'm bowing out.

 

[DrCommonSense]

Oprah has nothing to do with any EDS theory. Her theory that outdated, unhelpful, closed attitudes will simply have to die out also applies to medicine.

Oprah has no "theories". Oprah is just an obese racist that basically makes her money on making middle aged obese women feel "good about themselves and weight".

I don't take her opinion on anything seriously. But bravo to her! Oz is utilizing that business model now to great financial effect for his pocketbook!

 

[DrCommonSense]

Good grief. I am stymied, both by your inability to read what *I* actually type, and by the fact that I my traditionally-compassionate mindset has taken a backseat to having the last word/putting you in your place. DCS, I cannot respect your arrogant, condescending, type-before-you-think attitude, but I apologize for belittling you in return. I hope you enjoy ythe rest of your night. I'm bowing out.

Yeah hoping "racist white people" die off usually causes that reaction in me. I mean what would be offensive in that comment right?

 

[medzeb]

Are you all the same poster with different screen names?

Funny how three people who NEVER posted here before all of a sudden start posting profusely on this subject making bold proclamations with zero evidence.

Nope, just joined today after someone shared this string on social media.

And I haven't made any 'bold proclamations,' however, did provide links to get further info on EDS in my original message.

Here is more info if you're interested in learning more:

http://ehlers-danlos.com/2015-annual-conference-files/Chopra.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3347929/

https://www.ncbi.nlm.nih.gov/books/NBK1279/

http://www.thepainrelieffoundation.com/tag/ehlers-danlos/1

http://www.thepainrelieffoundation.com/craniocervical-instability/

https://rarediseases.info.nih.gov/diseases/2081/ehlers-danlos-syndrome-hypermobility-type

http://ehlers-danlos.com/emergency/

 

[Medame]

Nope, just joined today after someone shared this string on facebook.

Do NOT indicate exactly where, please. Don't want him trolling it.

 

[medzeb]

Do NOT indicate exactly where, please. Don't want him trolling it.

It can't be trolled because the mention is not 'public' and is limited to a specific audience.

 

[medzeb]

Wow think how much taxpayer healthcare dollars she is wasting...now multiply that times 50 million... and voila you've got our enormous healthcare debt crisis

Yeah, really. Shouldn't all patients with chronic, incurable conditions just die already?

 

[DrCommonSense]

Nope, just joined today after someone shared this string on social media.

And I haven't made any 'bold proclamations,' however, did provide links to get further info on EDS in my original message.

Here is more info if you're interested in learning more:

http://ehlers-danlos.com/2015-annual-conference-files/Chopra.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3347929/

https://www.ncbi.nlm.nih.gov/books/NBK1279/

http://www.thepainrelieffoundation.com/tag/ehlers-danlos/1

http://www.thepainrelieffoundation.com/craniocervical-instability/

https://rarediseases.info.nih.gov/diseases/2081/ehlers-danlos-syndrome-hypermobility-type

http://ehlers-danlos.com/emergency/

Not one of them says that Fibro is related to this disease at 1/2 rate.

But cool story bro

 

[medzeb]

There is no diagnosis there indicating the need for Opioids

Opioids are in the standard of care for treating pain in Ehlers Danlos patients where pain is known to be severe, debilitating and widespread.


https://www.ncbi.nlm.nih.gov/books/NBK1279/

• Opioids are effective for both myofascial pain and neuropathic pain, but should be reserved for use after failing the above medications. They should be administered in conjunction with all of the above, except tramadol, in order to minimize total opioid requirements. Since they are typically used chronically (or at least several months), the primary formulation should be long acting (e.g., sustained-release oxycodone or morphine or topical fentanyl patch) with short-acting forms of the same drug used as needed for breakthrough pain. Routine use of two or more daily doses of a short-acting form should prompt an increase in the long-acting dose or another adjustment to the pain regimen.

 

[medzeb]

There's a difference between saying, "this patient is not a good candidate for treatment X" and "this patient is a disaster." Could we as a group try to have more of the former and less of the latter, at least in the public forum?

I think it's good for the public to see the real thought process that goes on for many doctors. Many here whom clearly believe this patient is a waste of tax payer dollars and doesn't deserve to be made comfortable. I think the callous thinking explains, in part, the epidemic of medical negligence and the growing public mistrust in your profession. I hope that those of you who made such careless and cold comments one day you have the tables turned on you and you experience first hand what it's like to be a patient at the mercy of a doctor who doesn't give a hoot about how you feel.

 

[medzeb]

Not one of them says that Fibro is related to this disease at 1/2 rate.

But cool story bro

I never made any such claim - you're referring to someone else.

 

[medzeb]

You can formally recommend avoiding opiates and make it obvious in your note. Then never see her again

Why on earth would you make such a recommendation? Are you not in the business of treating patients? Is an incurable patient with chronic pain not worthy of your time? Pathetic.

 

[Redleatheryellowleather]

30 year old female on disability with 3 kids: OXY/APAP 10/325 four QD, Mobic 15 mg, Lyrica 300 mg BID, OTC Aleve, & Seroquel QHS.

What's your next move...

View attachment 215823

As an EDS patient who mirrors yours down to the hip and SI pain, I can tell you that she isn't exaggerating her pain levels. I can also confirm that the vast vast majority of patients would prefer not to be on opiates if the pain wasn't such a huge impediment. It's usually a very big decision, one we put off for as long as we can because it means we're running out of options. We already have brain fog thanks to the EDS and POTS, we certainly don't need more of it.

Also, there is now an established link between EDS and Mast Cell Activation Syndrome, which would account for why you may see a lot of patients who claim allergies to other painkillers. As it turns out, I started having reactions to Nucynta while I was on it for about six months. Nothing major, just itchiness. I voluntarily went off it with my doctor's guidance, opting for LDN instead. It barely takes the edge off things, but it did help me develop more restorative sleep. What else has helped? Transdermal medical marijuana patches. That is the most consistent help I have found because it enters the blood stream and lasts up to 48 hours. No high either (even with the required THC), but they are extremely costly and can only be reserved for special occasions. Other things that have helped: Fiorocet. This is especially helpful given the cervical instability issue, which can cause headaches/migraines. The caffeine also helps with POTS.

Please keep in mind that EDS is essentially, a patient's worst medical nightmare. We live long, but extremely painful lives with no hope of improvement from surgeries or medications. Our bodies are essentially falling apart. The glue holding our joints together is faulty. I really want you as doctors to think about that for a second - what it would feel like from an anatomical perspective to have loose joints. Think of all the muscle and tendon overcompensation required to keep us standing upright. To sublux or dislocate joints on a daily basis. It's horrific to think about, but it's OUR reality every day. And gd forbid we have children prior to our diagnosis. Think about the psychological weight of unknowingly passing this down to our children. And those comments about being a burden on the system, you should be ashamed of yourself. As if the feeling of being burdensome on our families isn't enough, we have to hear it from doctors. SMH doesn't begin to cover it.

 

[bedrock]

To all the recent non doctor posters. You're not physicians just another patient who thinks they know more than a physician who spent over a decade in training.
Sorry but science trumps your emotions. This forum is for professional scientists and physicians, not wannabes. Please go haunt some patient blog.

 

[K4ns4s]

Just so y'all are aware - Lots of patients/public are reading your comments & replies. The ultra-condescending, dismissive, and cruel ones, are doing significant harm. I know our profession is chock full of callous narcissists, but the least you could do is not be a d*ick. Thanks!

 

[Redleatheryellowleather]

To all the recent non doctor posters. You're not physicians just another patient who thinks they know more than a physician who spent over a decade in training.
Sorry but science trumps your emotions. This forum is for professional scientists and physicians, not wannabes. Please go haunt some patient blog.

Because EDS is so rare and barely taught in medical schools, I would think hearing an intelligent patient's perspective to be extremely helpful in learning what may work for other patients. As far as the "we're not doctors" thing, I can guarantee you EDS patients spend 1000x more time studying the disease than actual physicians who are not geneticists or PTs that specialize in diagnosing it. For one thing, we have to in order to receive proper care from our other specialists who are treating the cardiac, GI, skin, allergy, thyroid, and immunology issues that go along with having this systemic disease that as I mentioned before is barely taught in med school. This concept is not unique to EDS patients, but to all medical zebras and their caregivers.

 

[VA Hopeful Dr]

Oh good, some pissed off patient saw this and told their friends.

Mods, can we get some bans up in here?

 

[Ducttape]

so ehlers-danlos is the new failed back syndrome... the new fibromyalgia... the new IBS... the new crohns.... the new SLE... the new peripheral neuropathy... the new rheumatoid arthritis... ad infinitum.

we have heard this talk before - about an "incurable disease" with "horrible suffering" that "only narcotics can help"...

that talk doesn't justify using chronic opioids for those other conditions, and it doesn't work for ehlers-danlos.

pain is a subjective condition. no medical condition alone "justifies" using opioids. there is little reason to use a medical treatment that is more likely to kill them than any other treatment.

it is upon the physician and the patient one to prove that the medical treatment improves quality of life beyond the subjective with no harm.

it takes a lot of empathy and compassion to just "do no harm"...

 

[Ducttape]

Because EDS is so rare and barely taught in medical schools, I would think hearing an intelligent patient's perspective to be extremely helpful in learning what may work for other patients. As far as the "we're not doctors" thing, I can guarantee you EDS patients spend 1000x more time studying the disease than actual physicians who are not geneticists or PTs that specialize in diagnosing it. For one thing, we have to in order to receive proper care from our other specialists who are treating the cardiac, GI, skin, allergy, thyroid, and immunology issues that go along with having this systemic disease that as I mentioned before is barely taught in med school. This concept is not unique to EDS patients, but to all medical zebras and their caregivers.

okay, so you are better than doctors?

then go ahead, write your own prescriptions.

 

[DrCommonSense]

Good grief. I am stymied, both by your inability to read what *I* actually type, and by the fact that I my traditionally-compassionate mindset has taken a backseat to having the last word/putting you in your place. DCS, I cannot respect your arrogant, condescending, type-before-you-think attitude, but I apologize for belittling you in return. I hope you enjoy ythe rest of your night. I'm bowing out.

Im actually a white male in my 30s. Very scary concept I know.

 

[PainDrain]

I explained the study in a previous post, I just don't have time to search pubmed right now to find it but here is something that explains one of the studies http://www.the-rheumatologist.org/article/function-despite-pain/. Dr. Claire Francomano also cited this figure in her keynote speech at the EDNF conference in 2015, she is the director of the EDNF clinical research center. Most of the EDS patients she's seen received a fibro misdiagnosis before finding her. The time you all have to argue with each other is quite astounding. You wont see pharma reps pushing anything to do with EDS because all the drugs to help it are generic, like h1 and h2 blockers and cromolyn sodium. They really do help patients pain because they can stop the inflammatory cascade of degranulating mast cells. This is how the internet works I guess, you pick one thing like prevalence that doesn't even matter so much, instead of focusing on the treatment options I suggested that WORK for patients and are benign. Great lecture for physicians to watch regarding 'pain' and 'allergies' in EDS with ideas on how to treat if you actually want to help patients instead of mock them.

To the EDS patient-posters on here. When considering the "life saving doctors" who made your EDS diagnosis have you ever considered the statement "to a hammer the entire world looks like a nail". I find that to some "experts" in CRPS, EDS, fibro, chronic Lyme, POTS, ect that every patient fits the diagnosis of their niche. It is literally a disease cluster around their community and clinic. Knowing the diversity of the population and how unlikely it is that everyone with that specific malady just happens to live or associate with said expert, I find the new EDS diagnosis trend similar to past epidemics of misdiagnosis.

I am also curious how a collagen disorder, knowing a little about molecular genetics and the role of collagen in the body, is related to the mental status impairment, Mast cell activation disorder and POTS patients with EDS always seem to have. For example, in my career I have seen two patients with true mast cell activation disorder and their symptoms were sudden onset of an anaphylactiod state without a trigger and they both almost died as a result of these episodes. They never had the vague complaints EDS patients seem to relate to their mast cell disorder.

 

[101N]

Although opioids are beneficial when taken for less than three months, studies of long-term use show that the drugs, while they may relieve pain, do little to improve function. Those who take the drugs for the longest periods of time, and in the heaviest doses, tend to be patients with psychiatric and substance-abuse disorders—a phenomenon that Mark Sullivan, a professor of psychiatry at the University of Washington, has called “adverse selection.” Sullivan told me that in poor, rural regions doctors are using opioids to treat a “complex mixture of physical and emotional distress.” He said, “It’s much more convenient for both patient and physician to speak in the language of physical pain, which is less stigmatized than psychological pain.” Some of these patients could be said to be suffering from what his colleague calls “terribly-sad-life syndrome.” “These patients are at a dead end, life has stymied them, they are hurting,” he said. “They want to be numb.” He believes that doctors are inappropriately adopting a “palliative-care mentality” to “relieve the suffering of people who have had very tough lives.”

 

[BBLoveWork]

I think everyone needs to stop for one minute and look up Ehlors-Danlos Syndrome. They don't think EDS is that rare anymore, just misdiagnosed. I have been talking with my fellow Med students and even faculty and we are now talking about adding EDS to more lessons because we noticed it really isn't that rare. It is just another one of the misunderstood disorders out there. Marfan's, ALS, MS, Lupus, and the list goes on. No we cannot know everything but many if we have the basics people won't have to struggle to get basic care. It took years to find out that my sister and father had GI issues because all the drs called it acid reflux. Well the day she vomited up almost week old chicken that she had yet to digest they finally listened. She is now on proper medication, different diet and lives a good life.

Think of EDS like the pacient who got lung cancer but never smokes a day in their life and didn't live with a smoker or the child with Type 1 diabetes but no one else in the family has it and you thought it was the flu till they collapsed in your office. Image your patients are family or yourself. How would you want to be treated. You would want someone to listen take notes and then help get to the bottom of the problem, rather say her take this and see what happens. I have a friend waiting to see a rheumatologist and geneticist because her physical therapist after she particular tore her Achilles for the 4th time said she could possibly have hEDS because he had her do the Beighton score and she scored a 7 out of 9 and her mom still could do 5 out of 9. (Mom would originally been a 9/9) She said she had knee and elbow surgeries tying to relive some of her pain and fix injures. The daughter has subluxations and the mom confirmed a dislocated kneecap when the daughter was little. Also the daughter has had pain for years but admitted she thought it was normal to be hurting daily. The mother also said the grandfather had hip replacements in his early 30's.

It doesn't take much to stop and listen. The only reason I went back to medical school was because my father got a steroid shot that gave him a nasty infection, caused 3 strokes, 3 TIAs and required 3 surgeries to get the majority of the infection out. The last surgery he got they had to place rods and screws because the infection had ate the bone. This all started in April 2016 and he finally came home in November 2016. He is still on antibiotics but they had to do some IV antibiotics which he had been off and on since June because they kept trying to kill the infection enough for him not to have to take IV stuff at rehab or home. He finished IV meds after having to get 2 different picc lines in December. We find out tomorrow how much longer we continue oral antibiotics. Try looking up MAI infection of the spine. Hard to find?? Well yes they about killed my father because they said in April he just needed therapy. He will never get better because PAs and some drs didn't listen. The first time I let them do there thing but I started researching some myself. The second time I stepped in a bit and gave a few notes I noticed and also where my father's BP needs to be for him function properly without stroke or sleeping all hours of the day. When that treatment didn't work I step in and made them listen.

 

[101N]

Classic adult-onset EDS self-diagnosed and presenting to 'pain clinic': http://www.aetv.com/shows/intervention/season-7/episode-1

 

[DrCommonSense]

I think everyone needs to stop for one minute and look up Ehlors-Danlos Syndrome. They don't think EDS is that rare anymore, just misdiagnosed. I have been talking with my fellow Med students and even faculty and we are now talking about adding EDS to more lessons because we noticed it really isn't that rare. It is just another one of the misunderstood disorders out there. Marfan's, ALS, MS, Lupus, and the list goes on. No we cannot know everything but many if we have the basics people won't have to struggle to get basic care. It took years to find out that my sister and father had GI issues because all the drs called it acid reflux. Well the day she vomited up almost week old chicken that she had yet to digest they finally listened. She is now on proper medication, different diet and lives a good life.

Think of EDS like the pacient who got lung cancer but never smokes a day in their life and didn't live with a smoker or the child with Type 1 diabetes but no one else in the family has it and you thought it was the flu till they collapsed in your office. Image your patients are family or yourself. How would you want to be treated. You would want someone to listen take notes and then help get to the bottom of the problem, rather say her take this and see what happens. I have a friend waiting to see a rheumatologist and geneticist because her physical therapist after she particular tore her Achilles for the 4th time said she could possibly have hEDS because he had her do the Beighton score and she scored a 7 out of 9 and her mom still could do 5 out of 9. (Mom would originally been a 9/9) She said she had knee and elbow surgeries tying to relive some of her pain and fix injures. The daughter has subluxations and the mom confirmed a dislocated kneecap when the daughter was little. Also the daughter has had pain for years but admitted she thought it was normal to be hurting daily. The mother also said the grandfather had hip replacements in his early 30's.

It doesn't take much to stop and listen. The only reason I went back to medical school was because my father got a steroid shot that gave him a nasty infection, caused 3 strokes, 3 TIAs and required 3 surgeries to get the majority of the infection out. The last surgery he got they had to place rods and screws because the infection had ate the bone. This all started in April 2016 and he finally came home in November 2016. He is still on antibiotics but they had to do some IV antibiotics which he had been off and on since June because they kept trying to kill the infection enough for him not to have to take IV stuff at rehab or home. He finished IV meds after having to get 2 different picc lines in December. We find out tomorrow how much longer we continue oral antibiotics. Try looking up MAI infection of the spine. Hard to find?? Well yes they about killed my father because they said in April he just needed therapy. He will never get better because PAs and some drs didn't listen. The first time I let them do there thing but I started researching some myself. The second time I stepped in a bit and gave a few notes I noticed and also where my father's BP needs to be for him function properly without stroke or sleeping all hours of the day. When that treatment didn't work I step in and made them listen.

Wow an epidemic of EDS has been forming that can only be solved with extremely high dosages of narcotic medications!

Wow what a coincidence!

 

[PainDrain]

I think everyone needs to stop for one minute and look up Ehlors-Danlos Syndrome. They don't think EDS is that rare anymore, just misdiagnosed. I have been talking with my fellow Med students and even faculty and we are now talking about adding EDS to more lessons because we noticed it really isn't that rare. It is just another one of the misunderstood disorders out there. Marfan's, ALS, MS, Lupus, and the list goes on. No we cannot know everything but many if we have the basics people won't have to struggle to get basic care. It took years to find out that my sister and father had GI issues because all the drs called it acid reflux. Well the day she vomited up almost week old chicken that she had yet to digest they finally listened. She is now on proper medication, different diet and lives a good life.

Think of EDS like the pacient who got lung cancer but never smokes a day in their life and didn't live with a smoker or the child with Type 1 diabetes but no one else in the family has it and you thought it was the flu till they collapsed in your office. Image your patients are family or yourself. How would you want to be treated. You would want someone to listen take notes and then help get to the bottom of the problem, rather say her take this and see what happens. I have a friend waiting to see a rheumatologist and geneticist because her physical therapist after she particular tore her Achilles for the 4th time said she could possibly have hEDS because he had her do the Beighton score and she scored a 7 out of 9 and her mom still could do 5 out of 9. (Mom would originally been a 9/9) She said she had knee and elbow surgeries tying to relive some of her pain and fix injures. The daughter has subluxations and the mom confirmed a dislocated kneecap when the daughter was little. Also the daughter has had pain for years but admitted she thought it was normal to be hurting daily. The mother also said the grandfather had hip replacements in his early 30's.

It doesn't take much to stop and listen. The only reason I went back to medical school was because my father got a steroid shot that gave him a nasty infection, caused 3 strokes, 3 TIAs and required 3 surgeries to get the majority of the infection out. The last surgery he got they had to place rods and screws because the infection had ate the bone. This all started in April 2016 and he finally came home in November 2016. He is still on antibiotics but they had to do some IV antibiotics which he had been off and on since June because they kept trying to kill the infection enough for him not to have to take IV stuff at rehab or home. He finished IV meds after having to get 2 different picc lines in December. We find out tomorrow how much longer we continue oral antibiotics. Try looking up MAI infection of the spine. Hard to find?? Well yes they about killed my father because they said in April he just needed therapy. He will never get better because PAs and some drs didn't listen. The first time I let them do there thing but I started researching some myself. The second time I stepped in a bit and gave a few notes I noticed and also where my father's BP needs to be for him function properly without stroke or sleeping all hours of the day. When that treatment didn't work I step in and made them listen.

The idea that an illness that was once 1: 250-500K is now a 1:5000 diagnosis is just BS. And let me tell you that MS, lupus, ALS and Marfans are not rare and....wait for it....we can actually test for these conditions. Call me crazy or callous but saying a patient has EDS based on a series of vague complaints and some findings of hypermobility without showing me a validated diagnostic genetic test is absurd. And even developing a genetic test that says this person has a point mutation in this gene causing x is difficult considering such things as variable expression, penetrance, SNPs, etc.

 

[ReadLitWriteLit]

Since no one seems to bother to use a search function. ...i strongly suggest checking www.ehlers-danlos.com today once the updated criteria are released before you kill someone.

https://www.omicsonline.org/open-ac...hypermobility-type-joas-1000104.php?aid=64912

http://www.ncbi.nlm.nih.gov/pubmed/23444824 (temporary English translation for the non french speakers http://invisibleillnessforum.com/index.php?topic=381.0)

https://www.hindawi.com/journals/isrn/2012/751768/