It’s All Greek To Some

 

Recently, I needed some physical therapy. I had a torn core muscle, nothing too serious. The Physical Therapist asked me, “So, you’re young and healthy, right?” Um, NO. I handed him my large excel spreadsheet that I have with me at all times listing my medications, conditions, hospitalization history. You could tell as he looked at it, it was all Greek to him. He didn’t understand a word of it.

I went to the Dentist. He asked if I was on any medications? I gave him the same list and he just stared. But then he at least asked a question, “That IVIG thing, is that just a shot? An injection?” Nope, back in the day maybe, but it’s an all day infusion. “Oh.”

I contracted a bout of tonsillitis during a weekend. That’s normal, right? Don’t need my infectious disease doctor for that. I headed to Urgent Care. The doctor was great. He listened to everything I said and gave me the right antibiotic. He said he wanted to treat it aggressively due to my Primary Immune Deficiency Disease (PIDD). Excellent. But as I was leaving he said, “Boy, I’m going to look all of this stuff up right after you leave!”

A few months back I had cause to see a neurosurgeon. This doctor is brilliant. He saved my Dad’s life last year from a large and aggressive brain tumor. So when I needed a neurosurgeon, I knew exactly who to call. He sat with me for a long time. He listened to my entire history. Once I was finished, he said, “You know, you are talking about terms that I heard for about five minutes in medical school and haven’t heard since.” It was starting to sink in; even a brain surgeon barely knew what I was talking about.

I have a gastroenterologist who oversees issues with my colon. It took 18 months to get my diagnosis. The G.I. listed all of the conditions that we would NOT be looking for. Things like chron’s, ulcerative colitis? He said, “No way, not possible.” And yet, I attended an Immune Deficiency Foundation (IDF) Retreat last year and heard the G.I. expert speak there. Those were tops on the list of possible G.I. complications for patients with PIDD.

As my frustration level skyrocketed, I wrung my hands and asked, WHY? Why is it that all of these brilliant medical professionals had never heard of my conditions or my treatment? Why does it, at times, seem like I have more medical knowledge than they do?

I asked the G.I. specialist this very question at the IDF Retreat. How could my G.I. doctor not be looking for the very illnesses that go hand in hand with PIDD? And he explained it simply, in most cases I am probably the first patient with PIDD that these doctors have ever met. And the odds are that I will be the last.

It’s the same reason that to this day, I do not have a primary care physician. I know other PIDD patients that do have excellent ones, but I personally cannot stand being treated by a doctor who has no knowledge of what I have or what I’m going through. Until I find one that truly impresses me, I’m going without.

So I let my 3 key specialists guide my care. Sometimes they communicate, sometimes they don’t. But I do my best to make sure they are all educated on my body the best that I can.

I know many of the other patients out there with rare conditions share my frustration. For now, the best we can hope for are physicians who are willing to listen and willing to learn. We are their best resource. The last piece of advice I received from the expert at the retreat was, “If you have access to a teaching facility, then head there.” Sounds like good advice to me.

 

Article written by staff writer, Kelly Clardy

 

Kelly lives in Atlanta with her husband and kitty. She developed PIDD in 1995, went undiagnosed until 2007, and has been receiving IVIG ever since. She also has: capillary hemangioma of the colon, chronic anemia, Hashimotos, insulin resistance, palindromic arthritis, and a host of other dxs. By day, she’s a Senior Project Coordinator and a Zebra. She can be found lurking on twitter, @collie1013 and Facebook, Kelly Jaeckle Clardy.

©2024butyoudontlooksick.com

  • I have a rare disorder, genetic, that most doctors have ever heard of it. I even have had a “hand specialist” tell me it was NOT possible to subluxate a joint (partially dislocate) and EDS, Ehlers Danlos Syndrome, was only something he had read about at medical school! I don’t have a primary physician, but I do see a PA, physicians assistent, who can spend more time with me and is more willing to look things up and try new treatments.

  • Thank you to Christine for ‘Spoon Theory’ which is valued by many as THE explanation to quote at anyone who does not yet understand what many of us live with.

    As a Lupus inhabitor, its ditto with many of the experiences of commentators above, and lists and perseverance are a necessary antidote to the personality/knowledge disorders of many, not all, physicians, but what I need to say here, and to Karen Brauer above, is about ‘stroke like episodes’.

    I have had them for twenty years, increasingly often and severe in the effects, and recently I have found new research that may explain them, and now in the process of getting the medical profession that come into contact with me, to also read the research and apply that new knowledge to my situation.

    As we know, Lupus is a systemic multi system disease, so its no surprise, to the patient that is, that the complex workings of the inner ear are affected by the Lupus disease activity … hence a Meniere’s type syndrome diagnosis, but now also the new research that shows the inner ear doesn’t only direct balance, it also is responsible for blood flow to the brain … my line of thinking therefore is: lupus – inner ear – vestibular disorder – brain shut down episodes that SO FAR I have always come out of! These accompany Superior Canal Dehisence Syndrome/Tullio’s Phenomenon/Autophony which the Rheumatologist has yet to accept are all part of the SYSTEMIC disease Lupus. I hope some of this info helps or is relevant to others … more at my blog. Thank you again Christine and all who take time to write here.

  • I used to have all my meds listed in one paragraph on a typewritten sheet. Any medical professional who saw it would completely freak out, not because there was anything on it that was alarming in itself, but because it was so LONG! Now I have two paragraphs. The first is the meds taken regularly, and the second is meds that are only taken as needed. Now the docs are more likely to actually READ what I am taking. I still from time to time am told I am on too many meds. I then ask which should I discontinue: the thyroid meds? the diabetes med? the GERD med? the arthritis med? etc. They shut up after that, especially when they realize I am on NOTHING for pain.

    I signed up for MedicAlert. In addition to the bracelet, I carry a card around with me that lists the longer version of all my medical conditions. I also have a typewritten list in my purse of all current doctors. If I go see a new doctor, I put together a bio pertinent to their specialty and bring that with me.

    One of my ailments is Sjogren’s, which is NOT rare. Had access to one of the foremost specialists on it when I lived in Denver. And my ENT (with my permission, of course) would bring interns into the exam room so they could see for themselves what it does to the ears, mouth, throat, sinuses, lymph nodes, etc. My other doctors, even if they didn’t know what was going on with me, they were willing to learn, often checking the latest medical journals and conferences, and I appreciated that.

    What a shock when I moved to Sioux Falls and was told by a highly recommended rheumatologist that there is no such thing as sero-negative Sjogren’s, and even if I had it, it is never disabling! I had brought in seven years’ worth of rheumatological medical records, and he wouldn’t even look at them! The next two rheumatologists were the same way. I don’t think any of them had looked at a medical journal since 1985. I ended up going to the Mayo Clinic just so they could re-confirm my diagnosis. And even there, I stumped a neurologist regarding my stroke-like episodes and brain lesions.

    My current rheumatologist and I are abiding one another, mainly because there is no one else in town I haven’t been to. She is slowly coming around because over the past three years, I have had just enough abnormal test results for her to realize that I am not making this up.

  • Nann

    First of all, I have to say I love the response Barbara is itching to give new doctors! Honestly, I *would* say that in response to a comment like that. But I’ve always been that sort of person. 😉

    My illnesses aren’t super rare, but the combo is unusual in my rural area – and I have great doctors. Both my primary and my GI are willing to say when they are uncertain about something or when they need to do more research. (It’d be nice if they KNEW, but I appreciate them admitting they don’t AND being willing to research and read up themselves.) To differing degrees, they think out loud in my presence and ask what I think. And the general surgeon I saw yesterday was the same. My rheumatologist is a bit more old school, but his nurse practitioner is great. I’ve had nurses in hospitals comment on the number of meds I take, but MDs haven’t done so – at least not until I bring up wanting to get off something or when referring to it is appropriate in my care. So, there are some good ones out there – they’re just hard to find! In a rural area, they all know of each other so once I have a doctor who “gets” me, I can get recommendations about others.

    As for medication lists, I carry two – one with meds, what each is for and doctors, the other adds a few more key tidbits they always need to know in the ER. They are always surprised when I pull out the appropriate one – but happily so! In talking to the RNs and MDs, I’ve learned that few patients do this – that few patients participate in their care to that degree. With good doctors, that is not only helpful, but also tells them something about what sort of patient you’ll be. LOL – the surgeon I saw yesterday was so happy with my nicely typed, alphabetized by section list!

    When my husband retires in 4-5 years, we have to move to another area (he’s clergy and it’s for the sake of his replacement clergy), so we’ll have to leave our primary. My specialists are 60 miles away though and we’re considering retiring there partly because I’m happy with them!

  • mmm

    When I first became ill my gp believed me because she could see the fatigue, the pain, and she new things were not right I had a older neurologist who dx hashimoto encephalopathy a rare ai diseease but he immediately moved. Time for a new neuro….first two told me women my age just become unhappy with our lives and become ill in our heads?!?! I was new to the game and let them drug me into oblivion for six weeks then my husband and I agreed the drooling must stop. A friend pulled major strings and got us into a very big name hosp. One dr. told me to work more and exercise less (I taught dance 35 hrs. a week… that is exercise) another told me to do the opposite. Another thought I might have HE but I would have to be alot sicker before he could help me. In two months I was alot sicker,and when my gp called him for help he refused. I called him to see what his deal was and this is what he told me “time is a neurologist’s best friend for a good diagnosis” I told him to just wait for autopsy and hung up. So my gp and husband worked together him researching her reading and calling other docs and me being a willing patient. I developed an unhealthy fear and hatred for neurologists, more than once my husband had to physically remove me so that I did not assault them. (can they not read prednisone and solumedrol and 80 lbs. weight gain on the list we gave them? I can now hurt you and will enjoy hurting you) We do carry a med list everywhere including a description of HE (cause its a weirdo thing to have) my husband never leaves me alone in hosp. cause he is so afraid they will screw up. Six years have a great new neurologist who I like seeing who studied under a HE guru guy who is willing to guide her in my treatment plan. Perserverance is the key and you being able to toss the bad apples out, and for me a hubby devoted to keeping me alive and out of jail.

  • El Perro

    As soon as my IIH is mentioned docs get a scared look and back away, spluttering. Hate it.

  • BD

    Oh wow, yes I understand very well! Some doctors and nurses look dumbfounded when the word Sjogren’s comes out of my mouth. Makes you want to run out of there. I feel like , Just at least just pretend you know what I’m talking about so I feel a little better.

  • Carolyn M Vella.

    Sometimes I think that “Physicians” and “Learning” are words that just don’t do together. I go to appointments with rafts of papers with the latest results from the trials and symposiums to give them to read. I always wonder if they do. I go to Johns Hopkins Lupus Clinic where I see a Doctor who is the head researcher. She has the manner of a researcher but at least she knows what she is talking about.

  • I can’t tell you how much I relate to this…thanks for making me feel more sane!

  • I have IC it used to be really bad the first five years. I was lucky that the second urologist I went to knew what the heck was going on with me. The first one told me all the spasms, pain, stinging etc was because I was a women! I would have to go to the doctor office all the time to get treatment for flare ups. Really they weren’t that complicated. They involved a cathiter, and Litacaine and hepein. I don’t smell well. I was Luck that Elmiron helped me but it took six month instead of the regular threemonths. I had no sleep , urging, pain, spasms, I would live in the bathroom. I probably could do the treatment myself if the nurses had given me all the measurements. They just put them in your bladder and you have to hold it for at least 45 minutes. I once had a terrible flare on a weekend and I though I was going to die so I went to the ER. Oh how stupid. I laid there screaming and a doctor came with a bunch of other doctors. He was the charge doctor for the ER, he came in my room and rattled of that I had something cystisis. I was really offended. I promptly interupped him and said no i have interstical cystisis! he looked horrified because I don’t think he knew what i was talking about. I said I needed a treatment then because I was in so much pain. He informed me that the treatment was too INVASIVE to do at the ER. I said I get it done in the doctor office and it only involves Liticane and Heprin and it is not invasive. What an idiot just could cop to not know what to do. I also have FM and it is awful. I have a GP who knows nothing about it. I feel like I am a walking source because I need to keep in touch with everything new and I read everything I can. I am now on tramadol and zanaflex and it doesn’t work well. I take cymbalta but I am in so much Myofascial pain and I can not even get into a pain clinic or get a pain mangement doctor. I have Medicad with hmo Blue Choice Option and since I am disabled I can’t be taken out of my County to go to the doctor. non of my other therapies are covered and because I have TMJ and other neck issuse I pay to go to the chirpractor to get any jaw relieve. I have hand pain. Joints ache, Migranes, so much more. I want to make sure I was tested for all the other stuff they should have tested me for. I am going to make an opinion to talk to my GP and he doesn’t know a pain doctor. He know not very much except he is really wants me to take Lyrica. I took Nuerontin and gain 100lbs and thirty on something else. I already lost one hundred myself. nuerontin did nothing to me but make me obese and I am a wreck. I don’t know where to go and how to find anything. People tell me to make trips to NYC and are they insured. I am just feeling more overwhelmed because I have so many things and they are getting more and more to handle. I talked to doctor about Savella, about other drugs but too new. Savella isn’t that knew and it has been used in Europe for a while. No I know Savella doesn’t work for everyone but since I can get no stronger meds for my break through pain. I feel helpless. I know I am not a drug abuser and I know my body very well. I just want some kind of help. Ic is a big problem and I hope you guys have yours settled down. I haved had a flare in years and I am so glad but I am a body for of widspread pain. I get the you should be on so many meds and at those doses does you doctor know about these. I want to social ize so much. I so wish it was easier to get around and I had my own car and was a good driver or my ultimate dream a driver. I wish I could have hot time and I am working slowly to try to advocate for my own pain.I feel like I need a miracle right now.i have memory issues and fibro fog, I also spell badly now and switch letters and numbers alot. At the pain clinic I told them about these and the NP aked me sarcastically if I had a learning problem? How can I get a referral from someone. I am calling all doctors who would are pain doctors but no ones new patients and I don’t know how to get an relief if I can’t get a geniune doctor to listen and believe. MY fingers and thumbs are killing me I feel like I want to rip them out cause I can’t stand them feeling like my joints are on fire . i have had body ache since a kid. I don’t really know when this started, I think I need a caing doctor. Soemone how knows at least as much as me. I don’t know where to stand. I feel like just giving up on getting better right now. Iknow it won’t happen but I am just too much in pain. Any suggestions. yes I know i need more stretches walking going to Ymca and other stuff but today is such a bad day. i have had the flu for almost a week so my positiveness has been shot in back. I don’t talk to any of my siblings. I didn’t do anyhing my siblings are just so involved with their wives and husband, kids and making money. Last year we were all together, my one brother tells me I am being lazy cause all the girls were doctorated. It would have been nice to stuck it too him but my Mom also had fibro, Krohn’s some bad digestive problems run in my family. I have anxiery disorder. I also have chronic depression. my doctors for years have felt my depression is genetic like my cholestrol. Other than getting o ut an being p ositive which I am trying what else can I do. I need love and prayer. I am sorry if this makes no sense i am just so burdened tonight. I wish someone would take me in and try to at least help with my pain. What ever happened to doctors wanting to help patients not doctors to throw me away.I went to pain clinic. I asked what would be the course of action after the meds I am becoming tolerant would be just like that and the Np yelled at me that they didn’t give naroctic’s or opiates. This visit was from the twilight. I was disrespected and I aked about triger point injections, PT and other things. what I won’t do just to get some real answers.

  • Karen Vasquez

    I agree about teaching hospitals. I have had the best care at teaching facilities.
    Great article. I know the Greek look all too well.

  • I feel you on this too. I’ve had to explain to a few doctors and what Lupus can do.

    But on the other hand and at the end of the day, we look to doctors to have the answer for everything and we realize that they are human.

    I just hope for a doctor that is willing to learn from me as I am willing to learn from them.

  • Liz

    2 years ago, while visiting the Womens clinic at the Seattle VA, I had to see a new resident, as mine rotated out. They hadn’t assigned me to a new one yet, but I was sick, so they just took the first available. He took me to the exam room, and read thru my history, my meds, addressed my concerns and prescribed for me, then shocked me…He said, ‘I see you currently dont have a doc, and if you would allow me to be your doc, I would greatly appreciate it’. I said, ‘why would you want me as your patient? I am known as a medical nightmare!’, His response was: I AM HERE TO LEARN, AND GAL, YOU HAVE SO VERY MUCH TO TEACH ME! I signed up right then..and he has been wonderful..previous to this, I had the docs you all had run into..ugh!

  • Elspeth

    You sound like me. Everywhere I go, esp when seeing a new doctor or going to the ER, I have a spreadsheet for all of my meds plus a printout of my Medicalert file. Saves a lot of time and frustration for both parties. I do have to explain things about the conditions they’ve never heard of and a few of the doctors do go to read more about the various conditions I have. I’ve also had a specialist who is known nationally and internationally for his knowledge and research who has had to ask me questions and read up on things too. Isn’t it fun being a zebra? (not)

  • Leanne

    My favorite is when a new dr looks at your excel spreadsheet and the first thing out of their mouth is “we need to get you off of some of these medications. You are taking too many pills.”. This is without looking at the list of syndromes and diseases I’ve been diagnosed with.
    GP? I have one, but he doesn’t seem to have enough time during our appointment to discuss my issues as a whole person. I’ve even tried to schedule back to back appointments so that we have more time. Doesn’t happen.
    Endocronologist? Can’t seem to remember that as an FM patient, ‘we’ need to keep my T4 slightly above the highest end of the ‘normal’ range.
    Neurologist? He has a clue, albeit not complete, he tries to treat all of me.
    …and the list goes on. Very few have a clue. Love the ones that get it.

  • Thank you for this! I am sorry about your frustrations, and I have dealt with this sort of thing for years with my Lyme and FM. Now that Lyme has been declared illegal by the federal government for the past 4 years, I can’t talk about it with any docs any longer. As for FM, ever since Pfizer came out with Lyrica for FM pain and spent billions on their tv ad campaigns, many people have heard of it, finally. Only in many ways it’s now worse. Because the drug company, who does not have a drug to treat any symptom except for pain, is only giving out the information that FM causes pain.

    Well, it does. And in my case (everyone is a bit different), also extreme fatigue, dizziness and vertigo, weakness to the point that some days my legs buckle under me, brain fog to the point that I sometimes cannot come up with the simplest words – and also makes it very difficult for me to learn anything new.

    Because Pfizer doesn’t have a drug for that, everyone – docs included – look at me funny when I bring up the other FM symptoms. They dismiss them. Because the drug companies don’t say the issues exist, so they don’t. At least to those who are not suffering with these issues!

  • Barbara

    I can tell, immediately, which Docs are going to be a help-and those who are not.
    I hand them my list of meds. They stare at the list. Their face contorts. Their mouth gapes open. When they are able to speak again I hear “Barbara – do you know how many different meds you are on? What could possibly be wrong with you that you take ALL these meds?”
    I want to answer….”NO! Give me that list back! (look aghast) I had no idea I was on all those meds. I have no idea what they are for. I must hurry home and figure it out! I have no idea why I would type them all out neatly with dosages and times per day! If you don’t know, then I am really sick!”
    But I smile and say “yes, I know how many I am on”. Wait for the 1000 flies to come out of their still gaping mouth. Pick up my mobile pharmacy and leave. Checking off, once more, a doctor without a clue.

  • Jenna

    And yes, I also keep a Personal Health Record: I take my laptop to every appointment; make sure the comments I put in it are along the same lines as the doctors’, then add my own later, in a different color/font; plus I include radiology reports, copies of printouts, if possible and whenever possible. A lot of MRI places are charging (thank God not the one I use!!) for personal copies if the request is made AFTER the day of your MRI, so be sure to ask before you leave: YOU have the RIGHT to not only a copy of the MRI; but a copy of the radiology report: and this includes from the ER.

    One way to get printouts of older medical records is to tell them you are hand carrying them to a consult. They have to produce them as a courtesy to the “new provider,” and commonly will without question. Take them home, or to the new provider, but stop at Kinkos and make copies first. And BTW: READ them first; doctors often editorialize about the “Difficult Patient;” and suffice to say most of us fall into that category!!! Disparaging comments are very common-even, and actually, especially in “teaching hospitals.”

    Read your file; it’s your RIGHT; and read it OFTEN!!!

  • Jenna

    Oh, you are so lucky they know WHY you keep getting sick: I am truly envious. They tell me to get the flu shot as not to GET H1N1, I tell them that’s what will happen; and they bully me into it. Guess what?

    I am plagued with constant headaches; I no longer bother to tell anyone, I just deal with it: they want a consult for that too; but at a different place for the constant exhaustion, infections, sinusitis, watery eyes, and pain from the soreness in muscles.

    I have ONE DOCTOR I trust, and he said to me last night, “Jenna, you are probably the best person to guage your pain management…and what else you need…go ahead…” and he went on to give further “instructions” which we both knew I’d already done, to “legitimize” what I had. This doctor, I will move around the COUNTRY for, God help me should he ever move, I will be up the creek.

    But the rest of them–I could easily forgo. PCP? What’s the point? She did discover a very severe Vitamin D deficency; but as shrugging her shoulders as to WHY.

    They have forgotten the rule of thumb with anyone who has an autoimmune disorder (I DO have a dx of Sjogren’s, but it says in every piece of literature, it accompanies other autoimmune disorders, yet they have to diagnose one!!!), and that is:

    “When you hear hoofprints, do not turn around and look for horses, but look for ZEBRAS!!!”

  • Fiona

    Hi Kelly

    What a great idea !!! when you go see a new doc of any kinda GP to bone docs they hardly ever read your medical notes and what to hear your version ‘sighs nice idea but very tiring and upsetting for us ‘ love the idea of just handing a writen version in ‘your words’ so you dont forget anything either brilliant !

    Do you guys have a template of your medication lists I go beg for to help me on my way ! or any tips that be great !

    im on twitter @pinkglitterdew

  • Lara

    so true!
    when i told my PCP that my neuro thought i might have a mitochondrial disease that is presenting like MS, he literally took three steps back away from me. excused himself from the room, came back in a minute later, and said,”If there are three people from here to Manhattan that know about mitochondrial disease, that would be a lot.”

    i think he excused himself to look it up.
    then, of course, he offered me antidepressants because “if you don’t get a dx you ‘ll need them, and if you do get a dx you’ll need them.”

    naturally I threw the script in the trash.
    i hate that none of these docs talk to one another, and no one treats the whole person, just the parts, and they’re the so called experts. You have to ask them if they’d be willing to do the proper leg work to treat you if they don’t know beans about shinola.

    oy.

  • Heidi Moore

    Kelly, I needed this today. I just was diagnosed with my second rare disease. How many times have I heard the line about my illness(es) having been covered in an afternoon in med school.

    I also loved what Miranda said: “Ummmm….doctor, I don’t believe in your specialty either; now, can you please order test z and prescribe me some y (and while we’re at it some Xanax, too, because talking to you is causing me to have severe, protracted anxiety!).”

    Best,
    Heidi

  • Miranda Rice

    Oh Kelly, I love you! Thank you for putting that into words. You have my empathic frustration! I once saw a “specialist” who said that he “did not believe in” one of my conditions. I was dumbfounded. We are not talking about mystical faeries of the mist, Sir Doctor……we are talking about actual, factual medical conditions……wtf, you don’t BELIEVE in it???? Are you sure you’re a doctor, I asked?

  • Wow very well said. Sorry you have to go through any of this, but glad to know. That it’s not just me…
    Really Takecare, & thank you for sharing

  • Darlene

    Nice to know I’m not alone. I, too, have lists and print outs. I won’t go into detail about my history… very similar to the comments above. However, when my health first began it’s decline, I immediately started collecting business cards from the specialists I’d seen. I lined them up on a piece of paper and photo copied one. I then wrote on the card, “MRI – May 2001”. I made copies of that and took the pages to my (forever) “new” doctor. This seemed like an easy, streamlined way of keeping everyone informed.

    Good grief. It’s a job in itself!

  • Jen

    Wow, does this sound familiar!!! I carry a bunch of papers with me at all times – meds (a spreadsheet, of course… including allergies), med history (please don’t put me on something that didn’t work or had some potentially fatal s/e before!), a list of all my doctors (I had to change things all up so it would still fit on one page – you know it’s bad when…), a list of surgeries/anesthesia history which also has a hospitalization on it, another sheet with my psych hospitalizations on it, my general medical history, and, depending on which doctor and which ailment, I’ll bring along a history – either neuro or GI (psych is too hard to explain anyway)……..

    When I see a new doctor, I often just print all of the paperwork out – fresh, new copies. First, it seems odd to me (how scary is this?) that not everyone carries around a list of their medications! How can anyone keep track? Oh… right… I take a page worth; most people can remember their own. “Are these my copies?” “Ummm, yeah…” They are shocked! I hear how “organized” I am, which is true (that perfectionism is a bear), but honestly, my medical, medication, and surgical/anesthesia histories are too complicated to keep in anyone’s brain, let alone one with mental illness, a stroke, a brain injury and 21 ECT treatments. Don’t ask me to remember anything… EVER!

    Whenever I go see one of those many doctors, they’ll ask if I’ve had any med changes since I was last there. I laugh at them, give them the list, and let them figure it out! Things are constantly changing!

    It’s just so great to hear I’m not alone in this, either! Does anyone else have to get a huge purse to carry around those lists and PRN meds, let alone if you miss any doses while you’re out? “Yes, could you please point me in the direction of your mega-purses?”

  • I can so relate! It took me 7 years (average with someone with my illness) to get a diagnosis. I have actually asked a doctor about this. I was told that they don’t have time to specialize in each and everything out there. And that they do NOT want to be known as a doctor that specializes in something that takes so much time to treat. My disease, “Interstitial Cystitis”, is common but extremely mis-diagnosed and misunderstood by a largely under educated medical community. NO Wait, I need to change that, these kids in medical school are not being taught up to date info at all on many chronic illnesses.
    The doctor I spoke with that is a top specialist in the country for my disease said that these doctors don’t want to have a stigma placed on them that they treat someone with such a time consuming illness. Paperwork and appointment times go over the allotted time insurance companies allow. So, if you are “really” sick and require more than a quick fix…..unless you find a true medical “Hero” you are going to have a time trying to get the type of compassion and treatment you deserve. But, remember tenacity pays off….Never Ever Give UP!!! Best Wishes, Patty

  • Nan J.

    Excellent! You express so many things I’ve been through! I was diagnosed in ’04 with PIDD. My cardiologist (stent ’05) thought the IVIG was a type of supplement! He didn’t know to time my stent with the IVIG–so I got a sinus infection in ICU, that I was fighting along with recuperating! Of course, it was an emergency, but the test was not. I am required by my insurance to have a PCP, but the one I had was not proactive, and would not really coordiante care between all my specialists (cardio, endocrinologist, ortho, pain dr., 2 allergists & immunologist.) I have found a new one who is a little bit better. She has done some testing that other drs should have ordered–so, new things to deal with. I carry an extensive med list, but haven’t added conditions to it; good idea, and I will do that.