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Medical Merry-Go-Round

  • By FrustratedPatient

    Anyone who has been to a Dr for any reason, but particularly for those of us with multiple chronic medical conditions, you know how frustrating the medical system can be. Now, this is not intended to be a “let’s bag on all Dr’s” session. There ARE some great, caring Dr’s out there and I was fortunate enough to have one of them as my PCP for over 13 years (Dr. Nathalie Majorek, take a bow!).

    Where the system as a whole breaks down is when you need to see multiple providers, and the total lack of cohesive communication between them. I took it for granted that when I was referred to a specialist through my PCP, the information was immediately shared between the different providers. Through my own experiences, and that of a close family member fighting Cancer (this will be for a later episode), I was horrified to discover this was not true. This is not only mind-blowing, but extremely dangerous.

    The breakdown in communication is not just limited to “provider to provider” either. When’s the last time you’ve had to contact your Primary Doctor’s office? It’s either instant voicemail, or several minutes of KENNY G! So, you leave your message and several hours later (I swear they have” Homeland Security level” monitoring devices to know the precise moment you will not be able to get your phone!) they finally call you back. PHONE TAG…YOU’RE IT! I mean, who doesn’t love a good game of phone tag, right?

    O.K., so you finally get “Susie Sunshine” on the line to book your appointment. You show up 10 mins early like a good little doobie, just to wait in the uncomfortable waiting room with all the other walking germs. 30-45 mins later they call your name and you feel like you’ve won the lottery! YES! THAT’S ME! Looking around at all the other fools in the waiting room all smug, “ME! That’s right, they called ME”….maniacal laugh.

    The Dr finally enters the room, looking stressed out and hurried. You go through your array of symptoms and 10 mins later, leave with a prescription or two and a referral to a specialist. Of course, you’ve forgotten the 10 questions you wanted to ask and walk away like, “OK, there’s an hour of my life I’m never getting back.”

    Now you get to start this whole process over again with the specialists office. YAY!!! Call, voicemail, office calls back (when you’re in the shower), rinse and repeat.

    Skipping ahead to your specialist appointment. “So, tell me what brings you here?” You go through everything again with this Dr (cuz I don’t know about you, but I absolutely LOVE repeating myself). The specialist decides you need further testing, whether it be blood testing, XRay, MRI, you get the gist.

    Guess what? You get to call and make that appointment now too! Second verse, same as the first. Skipping ahead to your actually testing appointment (you’re welcome)….you’ve had your blood work done and now it’s time for the follow up. Do I really need to say what comes next? Yessssss, our favorite game….phone tag! Oh, this time it’s a REAL treat because not only does your specialist want to see you back for a follow up, but your PCP too! Are we having fun yet!?

    After following up with your specialist, a month or so later you follow up with the PCP. Again, since you get the idea about call, voicemail, return voicemail, wait, wait and wait some more, I will once again skip ahead. So, you’re sitting on the exam table and the Dr walks in. “So, how did it go with the specialist”? Seriously, they didn’t forward all that info to you? My initial exam, testing, follow up…nothing???? What’s that, you would like to see the lab results? Why no, I did not bring them with me but sure, I’d be happy to contact them again (call, hold, voicemail, return voicemail….tag!).

    Wouldn’t it be great if there was an “all-in-one” way to make this exhausting process easier for us? Each of your providers offices may have a patient portal where you can look at some of your medical records, you may eve be able to schedule an appointment, but they do not communicate with any of your other providers, so not much of a help…bummer!

    We need a way to sign on to ONE system, be able to contact ALL our providers. I sign on, check out my PCP schedule and book it online myself (good byeeee Susie Sunshine & phone tag!). I see my specialist, who I also invite to my portal who can then *gasp* instantly update my portal with my appointment info and test results. If I have a question for any or all my providers, sign in and send a secure message (again, goodbye voicemail!).

    Sound like a pipe dream? It doesn’t necessarily have to be so. Patient engagement is finally becoming the new “it thing” in social media circles. We, as patients, need to bring it into the Dr’s office as well. Dr’s are a tough group and seem resistant to anything that smacks of social media. It is up to US as patients to take charge and get all “up in their grill” about it. Start the dialogue with your Dr’s, let your voices be heard.

    Sincerely,

    The Frustrated Patient.

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  • By Nancy Harris Bonk Moderator

    Hi Frustrated Patient,

    Thank you for sharing your thoughts with us. I see a doctor who is part of a larger group who does have a system similar to what you describe. I think as doctors become paperless, which is a time consuming process, we will see more of the patient engagement you described.

    Nancy

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  • By FrustratedPatient

    Hi Nancy,

    Thanks for the feed back. I was curious, do you know
    if the communication is just between the providers
    within that group, or would it allow for shared
    communication with another provider who may
    not be in their particular group?

    Thanks

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  • By Janet

    I have found a gold mine!!!! And I came upon it by total accident !!!

    Please everyone…do yourself a favor and go to amazon.com and look for the book entitled The Migraine Miracle, A Sugar-Free,Gluten Free,Ancestral Diet to Reduce Inflammation and Relieve Your Headaches for Good by Josh Turknett, MD

    I had my first appointment with Dr. Turknett this morning (it just so happens he’s in the Atlanta area, Decatur, Georgia to be specific.) Dr. Turknett is a board certified neurologist and clinical researcher in the areas of migraine, stroke, Alzheimer’s disease, and Parkinson’s ….the best part Dr. Turknett USED to suffer from migraine. I use the word USED TO…past tense because through his research and finding what foods our ancestors ate and the horrific additives, etc. in foods today…going back to the basics…ridding of sugar and gluten…because many know gluten free usually means lots more sugar and tons of carbs. His 21 day meal plan will get you on your path to becoming migraine free. It worked for him and short of trying any more dumb medications ..I’ve decided to follow a fellow migraineur who found what to take out of his diet and what to add and this led him to less and less migraine days until now he is migraine free. I didn’t think to ask how long this took, but by my next appointment on June 10, 2014 I feel confident enough to believe I will be at least 50% better! hopefully more as I’ve already begun lowering my carb intake and taking away sugar and anything white, ie, flour, rice, potatoes, bread …and along with flour Dr. Turknett includes wheat, barley and rye…it will take discipline….but I can honestly say in 38 years I’ve tried everything…of course I can’t mean EVERYTHING, but my husband thinks so and Dr. Turknett says the fact that I was detoxed off all meds 2 years ago makes this an easier transition. So I keep feverfew 100mg and riboflavin 400mg…so off to make my grocery list …and there’s foods on there I haven’t eaten in 38 years….I will let you know how it goes. Maybe God brought me to Georgia for Dr. Turknett and our first grandchild was the bonus …I’m willing to take this leap of faith. My food list is so small now…with a 21 day meal plan in the book there are plenty foods to eat and the RIGHT foods.

    I ask all of you…check out Josh Turknett’s book…..you have absolutely nothing to lose and gain migraine free days. I’ll keep you informed.

    Today I feel blessed.

    Janet Jones

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  • By pauline

    Hi Janet, what you say is true.. I’ve taken bout everything too and I started to think to myself maybe, just maybe, it’s what you’re eating… and I am eliminating things that I know arent good for me. So I’m getting back to the basics..BUT way back when I was a child my mom always bought and prepared healthy foods and I was still having headaches. Also, I experienced depression in grade school (I don’t remember what grade lol) and I continue to have depression, but I have learned how to manage that.. so, I’m going to tackle these headaches now 🙂 And Janet the list of foods that you can eat IS small! But that’s ok because now I can pick and choose what kind of vegetables (I want) not what mom pushed on me Lol that sounds sooo funny to me now, because she used to steam artichokes and Brussel sprouts turnips Swiss chard and now I LOVE them! Of course she had a pretty nice garden and everything tasted so good back then too (but not the Brussel sprouts) I’ll ck back to see how you’re doing Janet, and hopefully I’ll have some goods news too! Pauline

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  • By Janet

    Wow…I know you didn’t mean to but you’ve sort of burst my hope bubble…this doctor and fellow migraine sufferer offers me hope. Hope that countless headache specials across the US had promised also. I’m praying after 40 years it’s my turn for relief.

    Your comments were like a double edged sword….
    🙁
    Blessings
    Janet

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    • By Kerrie Smyres Moderator

      Janet,

      Please know that the diet could be exactly what you need and could give you relief. Others who have found migraine relief are always a source of hope and it’s worth trying what they’ve tried (as long as it is safe) to see if it helps. This diet sounds like is safe and I really hope helps you.

      I have put all my hope into treatments in the past and been devastated — and plunged into deep depression — when they didn’t work. When I read your post, I was worried you might be doing the same. Going into new treatments knowing that they have worked for others and may work for me (but may not) has kept me from such crushing disappointment. I was hoping to save you some grief if the diet doesn’t work out, but that may have been presumptuous.

      I’m sorry if my comment sounded harsher than I intended. I truly hope you find relief, whether with this treatment or another.

      Take care,
      Kerrie

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  • By Janet

    Kerrie
    I appreciate your response.

    I know better than to hold out hope any longer for any type of relief. After DHE in patient treatment in march 2012 failed I decided I was finished looking for relief…and I meant it.

    I was online on amazon.com looking for a book and it there was this particular book in my recommended section. I bought the book because of its contents. When I discovered the doctor who authored it was a migraine sufferer and only 40 minutes from my house I decided I can’t lose more than I already have. I take nothing for migraines. I have a PA who will write relpax and zomig for me and I was going to,just live this way until the end I suppose.

    So in my mind…I don’t hold,out a lot of hope. I basically eat this way already, except the decaf Starbucks coffee I drink daily with 5 pumps of hazelnut syrup went.

    So I have nothing to lose except eliminate all sugar and see what happens. Already gluten free….

    I do appreciate your comments and rest assured.live been told more times than I care to remember “some people,just can’t be helped and you’re just one of them” from too many doctors. So I’ve lost a new patient appointment fee and $13.95 on a book that holds a lot of useful information.

    If by some miracle things change for me after the 30 days I’ll be sure to post it.

    I’m weary and I’ve given up.

    Blessings
    Janet

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    • By Kerrie Smyres Moderator

      I completely disagree that there are people who can’t be helped. It may take a lot of work and patience, but I believe there’s relief available for everyone. I’ve found that doctors who tell a patient they can’t be helped have reached the limit of their knowledge or ability and blame the patient for it.

      I know you’re weary and worn out, but you’re also seeing a new doctor and reading up on migraine all the time. That doesn’t seem to me like someone who has given up, but someone who is exhausted by chronic migraine, which is to be expected. Despite all this, you’re trying a new approach. That’s a testament to your courage and resilience.

      Hang in there. You’re stronger than you know.

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    • By Janet

      Kerrie
      Thank you. Yep…but when you and your doc don’t agree and I refuse to try something that I’ve tried before and it failed miserably…it’s hard to hear “I’ve done all I can…you are just one of those who don’t respond to any treatment”… I know I’m difficult because over the years the heap of meds I’ve been on have brought on other illnesses as it has for so many others. So to say I won’t try so etching is far from the truth. I’m not going to do the same things over when I know the outcome. With a husband who FINALLY realizes my frustration, agony, isolation and depression…he stands behind my decision not to eat things that have proven poison to me.

      You are and continue to be an inspiration.

      I always have relpax and frova (zomig stopped working and I see I wrote that as a rescue med).

      As my close friend and pastor from my home church in Las Vegas reminds me…”keep on keeping on”…he knows my struggle and was by my side for 6 years during all my ups and downs. When he suffered a major coronary that by the grace of God did not take his life at age 57… He came to understand limitations like me and the frustration of being stuck at home and a body that wouldn’t do what the mind wanted. His trial and my trial…two very different ailments…but all the same anger. I truly miss our counseling sessions…he was my connection to hope.

      Blessings
      Janet

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  • By Tammy Rome

    Janet,

    I sincerely hope that this course of treatment gets positive results for you. Either way, please keep us posted on your progress. I completely understand that feeling of being worn out, fed up, and at the “end of your rope”. I’ve been there many times and may be again. One of the important things I learned the last time I reached that point was to resist the urge to discount previously tried and failed treatments. Sometimes a tweak in dosage or delivery form can make all the difference. Other times, diagnosing and treating co-morbid conditions (for me it was sleep apnea https://migraine.com/blog/is-snoring-giving-you-a-headache/) can make failed treatments finally work. Best of luck to you!

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    • By Janet

      Kerrie
      Thank you. Yep…but when you and your doc don’t agree and I refuse to try something that I’ve tried before and it failed miserably…it’s hard to hear “I’ve done all I can…you are just one of those who don’t respond to any treatment”… I know I’m difficult because over the years the heap of meds I’ve been on have brought on other illnesses as it has for so many others. So to say I won’t try so etching is far from the truth. I’m not going to do the same things over when I know the outcome. With a husband who FINALLY realizes my frustration, agony, isolation and depression…he stands behind my decision not to eat things that have proven poison to me.

      You are and continue to be an inspiration.

      I always have relpax and frova (zomig stopped working and I see I wrote that as a rescue med).

      As my close friend and pastor from my home church in Las Vegas reminds me…”keep on keeping on”…he knows my struggle and was by my side for 6 years during all my ups and downs. When he suffered a major coronary that by the grace of God did not take his life at age 57… He came to understand limitations like me and the frustration of being stuck at home and a body that wouldn’t do what the mind wanted. His trial and my trial…two very different ailments…but all the same anger. I truly miss our counseling sessions…he was my connection to hope.

      Blessings
      Janet

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  • By Janet

    Tammy

    Your comments and encouragement are much appreciated.

    Tweaking of drugs that you mention. Over the course of 38 years I’ve been on over 70 different preventatives and been hospitalized for in patient treatment 3 times. The last being March 12-19, 2012 for DHE which failed miserably. I still have side effects from that and would NEVER recommend it to anyone. I’ve had insomnia since and I finally begged my new PA FOR SLEEP MEDS. I DONT LIKE HOW I FEEL FROM RESTORIL..but I am finally getting some sleep…my body and mind were so worn out. Sleep deprivation I’m sure added to the chronic situation I’ve been in for so many years. That cycle is broken and this diet is my next try. Should it fail…I have relpax and frova….hoping not to eat them daily would be great…but I have lost the will and energy to move forward for any more guinea pig trials.

    I’m praying Dr. Turknett’s guidance of this ketogenic diet and feverfew and riboflavin will kick start me to more migraine free days. I’m sensitive to magnesium and rash and itch beyond belief.

    Again thank you for your post. It’s comforting to know my migraine.com friends are always here for me when my family have turned their backs ….except our daughter who suffers from migraine as well.

    Blessings
    Janet

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