Comments for Take Us Seriously

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Peggy, (bloodboughtchildofthelivingGod)

Peggy, (bloodboughtchildofthelivingGod) — Sun, 11 Mar 2012 20:19:40 +0000

What a joy and blessing this has been to find this site, I am pleased that the last reply was in 2012. My story begins with EI, (enviormentally ill) MCS (Multiple Chemical sensitivities)
What i am looking for if anyone wants to email me is….are any of you on a Naturopathy remedy for this besides grape-seed, I have dizziness. The doctors say I am healthy as a horse. They are ‘limpoma’s” and are not painful. In my Physical the doctor said he didn’t have a clue that he guessed I had a “dumb” doctor. So like one of the reply I am copying everything that I fee is legitimate I can get my hands on to give them. My wholeness chiropractor said the very same thing. Both acknowledge the lipomas are there but do not have a clue why they are painful.
I saw somewhere in a article that it had something to do with digesting fat. If anyone has confirmation on this please advise. Also someone said flax-seed would help and it has on the pain level only for a time and you have to watch the intake of Flaxseed if you have anyyyyyy digestive problems…. so anyone out there help please email me at germilgatroid@yahoo.com put in the subject line Dercums disease or I don’t open it.
God bless you…… and am interested in the “theory” on drawing it to you.
Peggy….. “for by His stripes we are healed amen” “all things work together for good …”

Comment on The Law of Attraction & Health Care – How I Learned that I Create my Experiences as a Patient by Justrobin

Justrobin — Tue, 14 Feb 2012 09:52:03 +0000

I promise I am not stalking you – but I am at this point in complete tears. As I began researching tonight, or playing “Dr. Google” as some drs like to call us trying to advocate for ourselves, I found you. And you Flipped My switch.

Shortly before this all started I took care of my best friend every day for 5 months until she died of a brain tumor. It was the worst experience with the medical community I had ever had…until now…As I go from owning a publishing company, a busy and thriving international magazine, to an invalid in bed who can JUST BARELY take care of my children. You see, my friend taught me all about the Secret…and when she passed in my grief I decided to write a book…but something happened, slowly I got sicker and sicker. I was diagnosed with one thing after another and called “complex” by everyone, who shrugged and said “lose weight” – who ignored the epidural fat inside my spine MRI, the mass near my pancreas and many other telltale DERCUMS signs (they said lupus or shrogens too and they say I do have Ehlor Danlos Syndrome, or connective tissue disorder) the only thing they really want to offer me is METHADONE. not answers, tests, or treatment. but Addiction! Somewhere along the way I lost sight of believing in the Law Of Attraction…until tonight I had convinced myself that i could never get that brilliant spark of creation back, because you have to actually feel it, be grateful for it, to bring it into being and all I feel now is a haze of pain.

I read your part 1 – and you flipped my switch.

I am ETERNALLY GRATEFUL!!!!!

~Robin

ps. I will stop filling up your comments now (still in tears, but happier ones)

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Justrobin

Justrobin — Tue, 14 Feb 2012 09:42:03 +0000

oh my goodness, I just surfed the rest of your site and saw that you have begun writing a book and so have I!!! Im so very excited for you and I cant wait till they take these off my nerves in my arms so I can type. I have been a writer all my life and this disease stealing my words nearly made me give up hope – Its about being unheard, undiagnosed, and also right now I am so very very angry about the discrimination, because the vast majority of our health problems and pain are not addressed simply because we have the misfortune of being obese! Blessed be, dear lady!

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Justrobin

Justrobin — Tue, 14 Feb 2012 09:39:01 +0000

Hi Ellen,

Thank you so very much for writing this!! Our stories are so very similar, down to drawing the circles around the spots and bringing them body charts -its only been three years, and they think Im crazy – ALL because I’m overweight. I really truly want to do something about this – when I’m a little stronger. Right now Im fighting for diagnosis, a medical professional told me I had this, and then said “but dont tell your doctor i told you or i will get in trouble” I went to my primary, and she blamed it on childhood abuse and when I explained that it all got WORSE when I lost 60 lbs she said “really? wow I couldnt even imagine you any bigger!” I have been going blind because I have two on the back of my head, in my neck muscles they are hard ones, and have caused me to have Intracranial Hypertension or too much CSF fluid in my head and unbarable headachess that never go away. I truly believe I have found the answer, now I call the law of attraction into affect that the dermatologist on March 12th will listen!!!! Many many blessings to you for making me feel so less alone tonight –

In Light!

Robin

Comment on Personal Medical Coach Wanted by Ellen

Ellen — Fri, 03 Feb 2012 00:25:22 +0000

Hi Michele…

Thank you very much for contacting me, and I am glad to hear that you finally got diagnosed, properly treated, and have recovered. You must have worked hard as your own advocate to get so far!

Please consider contacting In Need of Diagnosis (INOD.org) to find out about how you can help others on similar journeys (I am the vice president of INOD.) In addition, if you haven’t already, please sign my petition to create World Undiagnosed Day (it is on the home page of my website).

I hope we will have a chance to work together to make things easier for undiagnosed patients.

Ellen

Comment on Personal Medical Coach Wanted by Michele Phillips

Michele Phillips — Thu, 02 Feb 2012 18:35:21 +0000

I have recovered from a 8 year battle with a undiagnosed pituitary tumor. I have the education and the passion to advocate for patients that are too ill or too devastated to fight for wellness. I have just begun searching for avenues I can assist others. Please contact me.

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Ellen

Ellen — Fri, 28 Oct 2011 01:10:30 +0000

Dear Wanda…

Thank you for writing. I’m sorry to hear that so many of your family members are hurting from having Dercum’s. I have found that the pain medication Savella has helped tremendously with my pain levels (in addition to suppressing my appetite, allowing me to lose weight). I am also taking Grape Seed Extract, which seems to have helped a lot with resolving lymphedema, which indicates that it might help with resolving Dercum’s symptoms as well (it is good for general vein health, and Dercum’s is caused by leaky veins).

We have more than Dercum’s in common – we’re the same age, and your email (tuckerkitty) and my kitty Tucker share the same name.

All the best to you and your family as well,
Ellen

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Wanda

Wanda — Thu, 27 Oct 2011 22:35:15 +0000

I am 1 of 6 children, my mother is 1 of 6 children and we all have Dercums. The one thing that I believe is it passed from mother to child and only a female can pass it on. There are 4 fathers among us 6 kids. I am the only non smoker and the one affected the least I have 5 lipomas, ( 3 inner right thigh, 1 inner left thigh and my really hurty one right below my rib cage.
I also believe this comes from scandinavia or germany and look for a female in your history with that background, who may have been obese or known for having the tumors.
My mother has 100s, my youngest brother has had 100s since high school, an older sister has a bunch of the small ones. Another brother who is very physically fit has the ones in his forearm, near the elbow. I have cousins who have had the big softball size tumors on their backs. It’s awful.
I do know my sister has a diagnosis on record at the University of Iowa. We knew the name of the disease before Dr. Karen Herbst brought attention to it but it’s nice to know there is someone out there taking this rare and painful disease seriously.
I am hitting 44 and the neuropathy from it is horrible.
I wish you all the best.

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Tina

Tina — Thu, 14 Jul 2011 18:01:18 +0000

Your stories are encouraging! I researched painful soft tissue lumps that eventually lead me to reading about Dercums. I printed the info off and gave it to my gp, but I can’t get him to take it seriously. He referred me to a general surgeon who told me I just need to lose weight and refused to listen to me any further, I have seen several “specialists” however I am now seeing a neurologist that I have some confidence in. I just want the correct diagnosis so I know what to expect and can begin some type of treatment. I keep finding more painful lumps.

Comment on Share Your Stories by Ablauf Mahnbescheid

Ablauf Mahnbescheid — Sun, 03 Jul 2011 02:20:23 +0000

Mahngericht…

Great. Thanks for sharing!!!…

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Ellen

Ellen — Thu, 30 Jun 2011 13:06:02 +0000

I am so glad that you finally were able to find a diagnosis and get treatment!! What a long journey… I understand how difficult it can be to diagnose Cushing’s when it only occurs sometimes… I finished weaning off the prednisone in January, so at least I know I’m not creating more lipomas. I am taking grape seed extract, which is known to help with vein health. Based on the research I’ve read, improving the health of my veins should decrease the leakage of lymph fluid that causes Dercum’s lipomas and the lymphedema I have in my ankles and feet. I agree wholeheartedly with you that Dercum’s is not as rare as doctors believe, and that many patients don’t mention their lipomas because they are focused on what seem to be more serious health concerns.

Wishing you all the best in recovering your highest possible quality of life,
Ellen

Comment on The Law of Attraction & Health Care – How I Learned that I Create my Experiences as a Patient by Ellen

Ellen — Wed, 22 Jun 2011 14:51:43 +0000

Wow, Winnie – thank you so much! What you wrote about reflecting on influential self-talk seeds from unhealthy relationships is so true… You are such a wonderful success coach and friend!

Comment on The Law of Attraction & Health Care – How I Learned that I Create my Experiences as a Patient by Winnie Giddings

Winnie Giddings — Wed, 22 Jun 2011 14:29:04 +0000

Thanks Ellen for sharing your amazing lessons that you’ve learned from being a patient. It is so true how “if we look at what our experiences cause us to feel, and ask what other experiences make us feel that way, …” What I’ve come to know from my own experience when I find myself in that place is to reflect on how somewhere during my developmental process, I planted many negative self-talk seeds from unhealthy relationships which influence the way I interact with others that may bring about the feelings of self-doubt. The great news is, we all can decide to have “Newly-acknowledged Truth”. My one word take away is DESIRE! My desire is to have a life filled with unending joy, purpose and complete fulfillment, and instill meaning and spiritual power-(Universal Laws) in all areas of my life. I thank you personally for sharing this wisdom with others out of your love and care. You are a model for others and a beacon of light. I celebrate your healing journey and remember that becoming or being proactive is the ultimate purpose of our existence! Be blessed.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Ellen

Ellen — Fri, 10 Jun 2011 18:28:14 +0000

Deborah, thank you for sharing this. I had a similar experience with pain management doctor – I ended up writing a letter to the clinic’s quality control board, and soon after he was no longer at the clinic. Since then I did find a much more helpful pain management specialist, who has completely improved my quality of life by informing me of choices I didn’t know I had.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Deborah

Deborah — Fri, 10 Jun 2011 12:20:11 +0000

Pain Management Doctor: You should have know your dose was high.

Me: But I am not a doctor or a physician

PM: You are responsible for your health care

Me: (after he told me he wanted to switch me to Morphine which I am allergic too). Okay then if I am responsible then I do not want to be on Morphine

PM: Well you have no choice

Me: But you said I was responsible for my health care and pill intake.

PM: Well not for this. I know what is best for you.

Wow, I had a horrible experience with this guy.

Comment on About Take Us Seriously by Ellen

Ellen — Sun, 22 May 2011 22:44:08 +0000

Thank you, Joanne, for letting us know about this new upcoming series, and recommending helpful resources.

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Recovering Cushing's Patient in Oklahoma

Recovering Cushing's Patient in Oklahoma — Sun, 22 May 2011 22:10:53 +0000

After 45 years of episodic Cushing’s, I finally got a diagnosis and a curative surgery. Two months post-op I’m beginning to heal, but had no idea my painful limpomas might be related. I’ll be completely weaned off my post-op steroids in just a few weeks and am praying the limpomas resolve as a result.

Like Cushing’s, I believe Dercum’s is not as rare as doctors believe, but is only rarely diagnosed. It’s easier to blow patients off than to diagnose something they can’t treat. I am sure that another reason Dercum’s is not diagnosed more is that many patients don’t mention their lipomas because they are focused on other health issues.

Comment on About Take Us Seriously by Joanne

Joanne — Fri, 29 Apr 2011 22:17:55 +0000

Hi, there’s a new program helping patients with undiagnosed conditions. Please share this information to those in need!

Casting a new series on a major cable network:

Looking for candidates with undiagnosed medical ailments…

WHAT’S WRONG WITH ME?

All across the country people have mysterious illnesses preventing them from moving on with their lives. Often at their wits’ end, most doctors have written them off. Dr. Eric Braverman, a brilliant New York City doctor, and his team try to diagnose these problems. Through therapy and cutting edge technology and tests, Dr. Braverman and his team determine what is wrong.

Looking for Candidates in the New York Tri-state area who would like a free medical evaluation and possible treatment.

If you or someone you know are suffering from a mysterious illness

Please send us an email here and tell us your story:

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Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen

Ellen — Mon, 29 Nov 2010 07:21:31 +0000

Nicole, since we’re all just sharing our experiences here, surely we can discuss the best way to approach getting quality healthcare without name calling or insults…

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Nicole

Nicole — Mon, 29 Nov 2010 01:37:33 +0000

I would never make the mistake of thinking that a doctor is god-like in any way, and much of medicine is not a mystery, it is science. I expect a doctor to listen to me and work with me because it is my body and i am paying for a service when I consult a doctor. If it were a mechanic I was consulting about a car problem, I would expect the mechanic to listen to me and determine the course of action together. I expect the same from a doctor. if the doctor doesn’t have an answer, he/she should say so and allow another doctor to do what she/he cannot do.
I recently ended up in a specialist’s office out of state because no doctor would diagnose a condition I explained repeatedly to them, gave them everything needed to make the diagnosis so that I could get the help I needed before it progressed to a stage of irreversible damage.
I was right, the doctors were not listening to me and now I have stage III of a particular disease, and there is so much damage and additional pain and still I am not getting therapy needed because my doctor is dragging her feet with the needed referral.
I cannot accept being careful to not get in “over my head.” Since it is ultimately my mind that must make the decisions regarding my health care it is only “over my head” when information remains unexplained. I have never considered doctors to be anything more than professionals in a specific field, like plumbers or climatologists or architects, they are professionals whose time is compensated.
There exists nothing that is “over my head.” Had I not pursued this and simply accepted the “I don’t know what it is but it isn’t that” that I was hearing from doctors whose egos were more important than an accurate diagnosis, I would still be being biopsied and poked while the scholarly medical documentation was being ignored
Trying to give an accurate amount of information in a short period of time to ensure prompt but safe treatment in the ER is my responsibility, and Adrienne, you are condescending. I have 2 M.A. and 2 PhDs and there is little that I cannot comprehend, including comments laced with derogatory snideness. Perhaps a sob story is what you hear ringing in your ears based on your “experience” as a “medical professional” but you probably work in coding or something simple and hear patient’s stories while you are eavesdropping on people. You are condescending and patronizing and your comments about medicine being referred to as “practice” are rather outdated and desk-calendaresque, as if lawyers and doctors having a practice were the same as a gymnastic routine. You are about 53, slightly overweight and single or worse, your husband is a cuckold, i know your “type.” You are snotty and your comments not sage or wisdom packed but infantile and without factual merit. Snotty.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Ellen

Ellen — Thu, 18 Nov 2010 04:06:03 +0000

Wow, Julie – scary! Not to mention that as far as I know, there’s no blood test for PCOS. He could have tested your testosterone levels, but metformin certainly doesn’t treat high testosterone!

Comment on "You Can’t Have That or You’d Be Dead By Now" by Julie

Julie — Thu, 18 Nov 2010 02:23:12 +0000

I was finally diagnosed with hypothyroidism because my levels were barely low. But on the way to that discovery the doctor I went to took blood tests for PCOS. He sent them in said they’d be back in a few days then prescribed me metaformin. Because he swore it would come back positive. I did as the doctor said, that is the reason they go to school so long right? HMM. Well, after passing out twice and my blood sugar dropping to dangerous lows and once I was at college ( which I no longer attend, cause of depression from this I dropped out) I went into the drs office after an ER visit and he told me to immediatly stop taking it my results were back and that’s not what it was. Then he laughed and said ” I’m just trying to kill you”.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Ellen

Ellen — Tue, 09 Nov 2010 15:12:17 +0000

Thank you for comment, Yvonne… This is unfortunately something I hear all too often.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Yvonne

Yvonne — Tue, 09 Nov 2010 14:18:48 +0000

This is a conversation I had with a newly-qualifed UK GP a couple of years back, when I was attempting to get a diagnosis for my hypothyroid symptoms:

GP: Your thyroid tests show nothing wrong.

Me: So what is wrong, if I’ve got all these symptoms?

GP: Are you married?

Me: No.

GP: Do you have children?

Me: No.

GP: Do you live alone?

Me: Yes.

GP (triumphantly): Oh well, perhaps you’re depressed! Would you like to try some anti-depressants?

If I’d been feeling well, I’d probably have told him where to stick that idea. As it was, I burst into tears and he scurried off to consult with one of other GPs in the practice. Another blood test followed and I subsequently was diagnosed with autoimmune hypothyroiditis. I resisted the temptation to tell the idiot GP “I told you so”.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Ellen

Ellen — Wed, 27 Oct 2010 04:04:35 +0000

Thanks for the nice comment, Cristy!

Comment on "You Can’t Have That or You’d Be Dead By Now" by Cristy Fiala

Cristy Fiala — Wed, 27 Oct 2010 01:03:03 +0000

Cool. Thanks for putting up this. Its always awesome to see someone give back to the interet.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Bette Dowdell

Bette Dowdell — Sat, 02 Oct 2010 23:26:43 +0000

An internist told me the reason my fasting blood sugar was 46 was that my father was a minister. And since “all minister’s kids have emotional problems,” I should see a psychiatrist.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Donna

Donna — Sat, 28 Aug 2010 17:05:50 +0000

I was referred to a cardiologist for SOB, Ekg show abnormal heart rhythm he wrote in his note no need for treatment she is asymptomatic.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Donna

Donna — Sat, 28 Aug 2010 16:43:21 +0000

When I told the endocrinologist that I had memory loss and I had to program my GPS to get me to where I was going or I’d forget, she stated she gets lost without her GPS. Not a doctor I wanted to see again.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Donna

Donna — Sat, 28 Aug 2010 16:40:00 +0000

I went to the surgeon to have a second biopsy of a new lipoma done as the allergist thought I one might be a sterile abcess. He refused to biopsy it stated it was just another lipoma and he did not want to make a patchwork quilt out of me. ( wow he must be pretty crafty)

Comment on "You Can’t Have That or You’d Be Dead By Now" by Donna

Donna — Sat, 28 Aug 2010 16:36:24 +0000

When I asked the rheumatologist’ PA to look at how purple my feet had turned in just the short time sitting on the exam table talking to her she looked down at her feet and responded mine too. (they were as white as a ghost)

Comment on Personal Medical Coach Wanted by Pamela

Pamela — Wed, 25 Aug 2010 03:18:15 +0000

I am Board Certified in Integrative Medicine, an acupuncturist, and a member of Harvard’s Post Graduate Association. I try to have a very balanced approach to healthcare. I love a challenge!! I do have a virtual office, with a network of several physician’s. This was created exactly for this purpose. We are able to consult each other, and You, the patient.
If You would like more information, email me at pmckimie@gmail.com.

Hope to here from you soon!!

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen

Ellen — Mon, 02 Aug 2010 07:39:11 +0000

Sage advice, Adrienne – especially about how medicine can be perplexing for even the best practitioners. Thanks for the comment!

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Adrienne C.

Adrienne C. — Mon, 02 Aug 2010 07:34:00 +0000

As a medical professional myself, it is important for the patient to relay all necessary information. However, not to sound condescending, we don’t have much time or room on the history intake form to put EVERYTHING down. We don’t need nor want to hear a patient’s life history but rather the succinct and to-the-point info. Basically, it’s how long have you had symptoms, where does it hurt, past trauma?, etc. It’s difficult for the medical professional to condense a big sob story into pertinent information necessary for the doctor or whomever to diagnose and treat the patient.
Remember that doctors are not God. Medicine is still a mystery and can be sometimes perplexing even for the most well-seasoned and experienced physician. (Maybe that’s why the call it a ‘practice’.)
I DO most definitely agree with getting all and every single copy of results, records, etc., even if it costs you for “extra copies”. It’s NOT to make your OWN diagnosis but to have it for proof, in case there’s a discrepancy in billing or need it for legal purposes. Like it was said before, it’s a patient’s right to see and have one’s medical records. Just be very careful that you don’t get in over your head.

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Celeste

Celeste — Mon, 02 Aug 2010 02:33:16 +0000

Ellen, I am so glad that you also received a diagnosis after so many years of searching. I want to thank you so much for sharing your story. I am hoping that the more we all talk about Dercum’s disease, the more other people will finally get their diagnosies and the more the medical community will be educated in Dercum’s disease. Spreding the word about Dercum’s disease is the only way that more research will be done on Dercum’s disease.

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Ellen

Ellen — Sat, 31 Jul 2010 23:22:59 +0000

Celeste, I’m sorry to hear your journey was difficult like mine. I definitely had my share of psych referrals! My favorite quote from a psychiatrist’s notes: “Likes to collect diagnoses.” I’m glad you finally found your diagnosis, and I hope you’ve found some easement through effective management of pain and other symptoms.

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen

Ellen — Sat, 31 Jul 2010 23:12:36 +0000

Thank you for this important guidance, Nicole! You're right - it's so important to get copies of all medical orders and records and review them! Lab Tests Online is a great website for understanding lab tests, and Aunt Minnie provides helpful information for understanding imaging tests.

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen

Ellen — Sat, 31 Jul 2010 23:06:47 +0000

How unfortunate that the doctor saw your comments about your health as “tangential” and not “thorough”! Great advice, Nicole – thank you!

Comment on "You Can’t Have That or You’d Be Dead By Now" by Celeste Burckhardt

Celeste Burckhardt — Sat, 31 Jul 2010 21:47:32 +0000

“You just can’t come in for a test everytime you find a list of symtoms for a disease that matches your symptoms” then at the end of the visit he says, “let me know if you find any other disease that has your symptoms”.

Comment on An Undiagnosed Patient’s Journey to Diagnosis by Celeste Burckhardt

Celeste Burckhardt — Sat, 31 Jul 2010 21:40:05 +0000

Your story of your constant quest for answers and a proper diagnosis for your medical ailments sounds so familiar to my own. I also have Dercum’s disease and was finally diagnosed after 27 years. I have been called a “kook” and told it was “all in my head” from several people who were suppose to be professional doctors. I also found the answers to my medical quest first by searching “painful lypomas” on the web. Then I contacted the famed Mayo Clinic to find a Dr. who could give the diagnosis. The only thing I worry about now is what all of these “unbelieving” and “under educated” Dr.s have written about me in my records just because they couldn’t find the answers and brushed me off as a nutty person who didn’t know what I was talking about.

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Nicole S

Nicole S — Sat, 31 Jul 2010 15:46:56 +0000

I was surprised to find that notes in an intake at an urgent pain clinic revealed that “The patient speaks tangentially” which hurt my feelings because I was only trying to be forthcoming, trying to give information that I thought would help. Instead I was seen as a talkative fool. I have learned that doctors and other medical personnel do not want voluntary information. It is better just to wait for them to ask precise questons and answer their in brief, concise and as if I don’t know anything at all about my body. How disappointing. The more I know the less I should reveal has been the unfortunate lesson learned by me. All of this information went into my medical records which the disability judge looked at and denied me benefits, in a large part because incorrect information had been recorded. I had a problem with my left knee, a torn meniscus, and it was recorded as my having twisted my right knee. Make sure the information is accurate and ask to see what has been recorded. Medical personnel make mistakes. Doctor’s handwriting is often difficult to decipher and when done so by another person it is often recorded incorrectly. get your records and have mistakes addressed at your next appointment. If corrected it can make a difference in your treatment outcome.

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Nicole S

Nicole S — Sat, 31 Jul 2010 15:09:39 +0000

Something I learned recently may be helpful when trying to find a doctor who will actually listen to their patient. I recently had the opportunity to look at my physiatrist’s notes in my chart. I was shocked, very upset actually, to see that he had not heard what I said, he had written things that were absolutely not true, written that he had spent most of the appointment “counseling” me. he had ignored the reasons I had been referred to him. In fact he had written that I had no complaint of lower limb pain or weakness, which was one of the main reasons I went to see him. There was so much more that was incorrect I won’t bother with describing it here. My point is that we have the right to see our doctor’s medical notes about us and we should do so. We cannot establish a good relationship if we do not know what the doctor is actually transcribing in our records about us. It is so very important to have a doctor who is paying attention, annotating the appointment properly and we as patients cannot acquire good medical care if the doctor is not paying attention to us and hearing us. Furthermore, this type of medical notes in my record had a negative impact on my disability hearing. It was incorrect information that the judge had to look at and if the information is wrong, the outcome will be a denial of benefits. Get your records! You have a right to have them. The distress this has caused me has been terrible, which of course exacerbates pain. Not only do I not get treatment for the problem, I have been given an additional problem made for me by the doctor whom I was supposed to be able to trust. Get copies of your doctor’s notes of your office visits. It is your right and your responsibility to know what is being recorded in your medical records that get seen by many people, other doctors and even judges. It can save time and help determine whether or not a doctor is suitable for you.

Comment on About Take Us Seriously by Ellen

Ellen — Sat, 31 Jul 2010 13:10:51 +0000

Thank you very much, Susan! I’m glad you posted a comment, as I hadn’t seen your site yet — as I read through it, I learned more about the symptoms of Dercum’s than I had previously. Thank you for such a nicely organized and informative site, and I wish you all the best.

Comment on About Take Us Seriously by Susan Grimshaw

Susan Grimshaw — Sat, 31 Jul 2010 11:50:38 +0000

Wonderful site! So glad you were able to finally get a validating diagnosis….I totally understand your journey to a diagnosis.

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen

Ellen — Tue, 04 May 2010 20:34:33 +0000

Absolutely, Marianne! Thank you very much for your comment, and for the work you and INOD do for undiagnosed patients.

Comment on How to Get Your Doctor to Take Your Undiagnosed Condition Seriously by Ellen

Ellen — Tue, 04 May 2010 20:31:39 +0000

Hello Ellen! Your article about Why doctors don’t take those who are undiagnosed seriously and how to change that situation are wonderful. May we have your permission to put them on the “In Need Of Diagnosis, Inc. (INOD) website? INOD is a 501(c)(3) nonprofit.

Thank you,

—Marianne

Comment on Share Your Stories by David Friedman

David Friedman — Tue, 30 Mar 2010 16:23:50 +0000

I have a 9 year long undiagnosed progressive illness and am very interested in sharing my story and seeing if there’s a way of getting help that I have not thought of. I can email you my story if you send me your email address. My email is (removed for privacy).

Thank you and I look forward to hearing from you.

David Friedman

Comment on Personal Medical Coach Wanted by Simone

Simone — Tue, 02 Feb 2010 20:09:23 +0000

I am in the process of starting a home based service such as this. An overall patient advocate and diagnosis consultant/coach. I would like to speak with you.

Comment on "You Can’t Have That or You’d Be Dead By Now" by Sharon

Sharon — Fri, 27 Nov 2009 15:25:26 +0000

Before a colonoscopy the DR. says to you “Oh great, they always give me the hardest patients to do.”

Comment on Personal Medical Coach Wanted by Dr. Joseph

Dr. Joseph — Wed, 04 Nov 2009 23:09:01 +0000

I would be interested to hear what has happened to you and see if I can help.

Dr. Joseph
Family Practice

Comment on 10 Reasons Doctors Don’t Take Undiagnosed Patients Seriously by X Endurance

X Endurance — Thu, 24 Sep 2009 17:37:24 +0000

I think #8 is the most prevalent reason. Malpractice suits based on a doctor’s performance, or lack thereof, are too common these days.

Comment on Where is the Medical Curiosity? by bulletpointblogger

bulletpointblogger — Mon, 27 Apr 2009 19:05:49 +0000

Miss Waxie – your comic is genius, saying it all in a unique and telling way! Your endocrinologist hit it on the nose, didn’t he? I’m glad you found encouragement in our shared journey. Barbara at the Autoimmune Information Network should be able to help you find doctors who will take you seriously in your area, and is a font of knowledge about proper testing.

Congratulations on surviving the medical system of yesterday and today and continuing to fight on! Please do share with us what you’ve learned works in the process so we can create a better experience for undiagnosed patients in the future.

The Bullet Point Blogger

Comment on Where is the Medical Curiosity? by misswaxie

misswaxie — Mon, 27 Apr 2009 05:36:50 +0000

My god does my story sound like yours. And isn’t that horrifying in and of itself? That there could be more than one of these horrible things floating around in the world?

While I don’t have a brain tumor, after 20 years of being sick, I finally got a doctor who looked past 20 year girl who weighed 20 more lbs than she should, and ran every blood test in the book. Literally, over 60 blood tests in 27 tubes of blood. The hospital made me lie down afterward.

And what did he find? Celiac disease. hashimoto’s disease. and with the help of emg’s a varrient of cidp (though i’d had others before, no doctor ever read into my test results). I got BETTER under his care – though, i still developed lupus & ra, but that was inevitable, given how many years my system had suffered with undxed autoimmune things…

…but the part of my story that so sadly feels like yours is that upon moving back home (after i got too sick to live on my own), doctors in this city reviewed my case, my file, my test results and have determined “Nope. I just don’t see a problem here. She just doesn’t have those diseases as we know them.”

…my endocrinologist in nyc once told me that doctors who weren’t interested in my case weren’t interested in medicine. And that’s the bottom line, isn’t it? The difference between interest in medicine (or medical curosity) and the interest in the *business* of medicine.

Anyway. I hope the best for the both of us and I SINCERELY thank you for this empowerment. After being told my EMG isn’t even indicitive of ANY problems this past week, I’ve felt crushed – this reminds me i have to KEEP FIGHTING! I know I’m right – and you are too!!

I write a comic about my often comic adventures in the medical system called A Comic Life, Indeed – you can find it at http://acomiclifeindeed.wordpress.com – and I’d love for you to check it out if you’re ever in need of a good medical related laugh or just to know that you’re not alone in all this madness.

Wishing you the sincere best,

- Miss Waxie