How to talk to my neurologist???

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How to talk to my neurologist???

Postby RodeoRose » Sat Dec 10, 2011 12:46 am

I'm not really sure how to approach this topic...I know, though, that at leat 99% of us on these boards have dealt with a doctor, or doctors, who diagnose us has being hypochondriacs or suffering from conversion disorder simply because they do not believe the vast array of symptoms alone that are a direct result of our CM or SM. Personally I'm sick of it. I'm sick of defending my sanity/mental status and have proved myself "sane" via 2 complete personality assesment tests and psychiatric evals.

That being said, I have chosen over the last nearly 2 years to keep a lot of "new" symptoms and general concerns to myself rather than taking a chance telling them to any of my doctors...Besides, I swear that they dr's stop listening after 18 seconds of my appt. starting! Then they turn on their selective hearing and occasionally ask half-hearted questions w/o waiting for me to answer....Needless to say, though, keeping my newer symptoms to myself has caused 2 things: 1. those symptoms worsening, or occuring more often, lasting longer, etc. 2. possibly putting myself into a position where I either overwhelm my doctors with everything, or I come off sounding like a hypochondriac after all...As I slowly lose faith that I'll ever be seriously treated, I feel as if I'm between a rock and a hard place. I'm only 30 years old, and after battling w/ CM and SM for almost 12 years I'm exhausted and feeling hopeless.

I see my pain care dr. on Monday 12/12 and my neurologist on Friday 12/16. Obviously not all symptoms pertain to or involve pain, so my appt. on Monday won't be as "filled up" as the one on Friday.... What would you guys do, though? How would you approach these appointments? One thing I know for sure is that my pain in my T-spine has dramatically worsened in the last 5 weeks and I need to make sure that is the top priority on Monday so we can adjust meds as needed but more importantly arrange for further diagnostics. (A little while ago I posted about a white "blotch" on my MRI and since then all we know is that it is in the actual bone of the vertebra and that it would be very dangerous to try and even biopsy it, however we know that is part of the cause of my pain along with my syrinx.) But i can just tell that there's more going on...

My neurologist is quick to ignore half of what I say when she asks me how I've been and she has a tendency of intimidating me. Because of this, I have a hard time talking to her anyways. While I've learned to put my dignity aside in situations involving medical professionals, some of the new symptoms that i really feel need to be told to someone are already going to be hard on me to talk about. I'm already feeling nervous and highly embarassed, and I don't know if these symptoms have been had by anyone else with CM/SM, so i don't know how to approach my neurologist with them. Any suggestions?

I don't worry easily, but lately my pain levels and other symptoms really, really have me concerned. I've got to tell somebody about it, while hopefully not feeling like they don't believe me, they don't understand me, they don't just ignore me, they take me seriously and try and ease my discomfort surrounding new symptoms...

Any suggestions?

I'm sorry if this post reads more like a ramble, but with 2 vital dr. appts coming up this week I feel like now is my only chance to lay my cards all out on the table before I chicken out or resort back to not wanting to feel like the docs just think I'm crazy....

Thank you all~
~Maggie~
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: How to talk to my neurologist???

Postby jinglebells » Sat Dec 10, 2011 12:52 pm

Hi RodeoRose,
I can so relate to how you feel about the way you are being treated,i just went through the same ignorance yesterday with my gp,I have over the last months developed T spine pain,I ended up leaving his surgery feeling like an idiot and felt obliged not to tell him all my symptoms.The symptoms i did manage to blurt out were basically ignored,which got me flustered so i gave in.I live in the UK so things are different here,maybe you could write your symptoms down and ask the neurologist to go through them with you,that way they will have to acknowledge your concerns.
Somehow i managed to get my gp to refer me back to my NL and i will be writing my symptoms down for that appointment . I think there are many of us who have become afraid of mentioning all our symptoms for fear of being branded a hypochondriac.
Good luck with your appointments,I hope you can get some answers to set your mind at rest,
Take care ,Jinglebells
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Re: How to talk to my neurologist???

Postby drummergrl » Mon Dec 12, 2011 8:54 am

I wish I had something helpful to offer, but I just wanted to say that I completely understand what you're going through. It can be so tough being in the situation you're in, but it sounds like you're going about this process in a very methodical way- and that always helps. The only advice I have is to just be very heartfelt with how you're feeling- I've learned that begin too matter of fact makes some doctors think I'm just rattling off fake symptoms...if I have an earnest conversation and let someone see how vulnerable it feels (which is hard, I know) some doctors are more likely to realize this is TRUE and not a hypochondriac situation.

Anyway, best of luck today and Friday! I know how stressful it is to have big appointments back to back. Just be earnest and if they don't believe you, I'd find another doctor!
CM, SM, Scoliosis
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Re: How to talk to my neurologist???

Postby RodeoRose » Mon Dec 12, 2011 1:10 pm

Thank you for the advice. I will certainly speak in a very heartfelt tone. Maybe since I'm totally worn down physically, emotionally, and mentally I can better explain myself to my doctors. I can tell them better the affects all this has on me on a day to day basis. Fingers crossed! I've got a notebook that I keep with me to keep track of symptoms, spells, or anything new. I feel, though, like I have to play a game with the doctor's as to which of the symptoms are priority...how do you choose? It always seems impossible to get the chance to cover them all in an appointment. I hadn't thought of handing my notes to my dr. and going through like that. It couldn't hurt to try!

Thank you all again. I'm sorry that we all have to feel the need to defend our sanity rather than putting our time and energy into having a "good day...."

God Speed,
Maggie
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: How to talk to my neurologist???

Postby razzle » Mon Dec 12, 2011 5:24 pm

let him do his assesment first and see what he says . alot of times they answer some of oyur questions before you get to ask them. I wouldnt take a big list in there as some drs dont like that . I had one take the list and throw it away. which in turn I walked out and reported him jerk . so get the big questions out of the way . bUT try to keep up with him and the minute he stops talking throw in a question. good luck and keep us posted .. R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
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Re: How to talk to my neurologist???

Postby RodeoRose » Wed Dec 14, 2011 12:02 am

Well, one appt. down and one to go this week. Yesterday's appt. was w/ my "pain care dr." and it was a total waste. He immediately side-tracked himself by playing with his smartphone and looking up Relistor (?), a medication he admitted was expensive, not covered by insurance, and that I didn't need anyways. As i tried to get him to focus i mentioned to him that i was seeing my neurologist on Friday. He again side-tracked himself by trying to remember her name, mispronouncing it (for the millionth time), and telling me that he's not good with Swedish names...like I care. I had to also tell him that my neurologist is leaving her practice in a city 300 miles away and that she is moving to the valley I live however I don't know if she is going to open a clinic here or not. When he heard she was moving he began stuffing his business cards in my face wanting me to promote him to her...like that's my job. I know that her opening a clinic here would be greatly beneficial to many because we all live in very small, rural areas (I have to go about 45 miles just to see my pain care dr.), but that doesn't mean that he had the right to push himself like that and to waste vital time during my appointment. After that I couldn't get him back on track. He never let me finish a sentence or a thought. He did however tell me that I should check into mental health services in my area admitting that none of those doctor's take insurance around here or medicaid and that it'd be all out of pocket. I asked him "why" and he never answered. And unfortunately he is the only doctor within 125 miles that does pain care so I've got no choice but to keep seeing him.

Earlier yesterday I had my mom use a marker on my back as a way to pinpoint exactly where my most severe pain starts and where it radiates then I had her take a picture of it. I showed them to the dr. and he got more interested in why the "shape" of the line was like an "L" then he used one finger touched between my shoulders, and went back to talking about my neurologist. He never did a physical exam of any kind and hasn't since Nov. 2010!!! He then wrote about my RX's like normal, made sure to promote his new website and emailing system for the clinic, and reminded me again to tell my neurologist that he could provide her with plenty of new patients....whatever....

I have no idea what my appt. Friday may bring, but i've got to ask: HOW DO I KEEP GOING? HOW and WHY SHOULD I TRY AGAIN to get help, or at least a medical professional listen to me? I've already struggled for years dwelling that doctors will judge me or see me as a liar, a faker....I have ZERO self confidence and ZERO self respect. I'm 30 years old, have been struggling and battling with CM, SM, MVP, TIA's, and so much more, everything proven and documented in black and white, and yet everytime I go into a dr's office I instantly feel the urge to apologize to them for some unknown reason. I'm like a scared, vulnerable 8 year old child....and yet I still have some really difficult, embarrassing questions to ask my neurologist...feeling like a child just makes me panic even more about how to talk to my dr....

I'm trying as hard as I can to just forget about yesterday's appt. and clear my head before going into Friday's, but it's killing me. I am so sick and tired of being sick and tired...and I'm sick of my sanity being questioned and I pray the day comes that my doctor realizes that I was sane before all the medical professionals I've ever seen drove me into insanity...another "condition" that insurance won't cover...

I know that all of you have your plates full, and I'm sorry to be long-winded and ranting, I've just got nowhere else to turn. And while I love my family and friends, they really just can't understand...

God Bless you all,
Maggie
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: How to talk to my neurologist???

Postby pseudotumor » Mon Dec 19, 2011 10:10 pm

I'm sorry this is too late for your appointment, but still - this is going to sound odd, but I find when I see a new doctor that I try to act dumb about things and just lead them to my problems because it makes them feel more important and try harder. When i've gone in using medical terminology spouting all my symptoms, drugs i've tried, procedures.etc and sound too professional, and ESPECIALLY if I have ever 'theorized', I feel like the doctor thinks i'm just some obnoxious hypochondriac who webmd's everything because I want narcotics or something. So instead of "I had a radiograph guided nerve block but it didn't work because I think the pain is in my temporal nerves even though everyone thinks it's the occipitals", I say "I had an injection in my neck but it didn't work. Here's exactly where it hurts!"
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Re: How to talk to my neurologist???

Postby RodeoRose » Fri Dec 23, 2011 11:59 pm

I know what you mean! Thank you for the tip. I do try to "dumb" things down, but maybe I need to do more!! I know that I've had doctor's who believe me when I say "I know my body...," and don't believe me when I say "I know my conditions..." Medical professionals really do respond better when they feel "all mighty and knowledgable", I wonder if they'd respond even more with food or a belly rub?...lol!!!

Life is tough right now. After further image studies, blood tests, nerve conduction tests, etc. there are a lot more "proof" of symptoms causes and more "black and white," "hands on evidence" that there really are physical problems going on...i still have a few dr's that are taking the easy way out and calling me crazy saying all I need is months of "Behavioral Therapy." and the rest of the dr's seemingly overwhelmed with all the results and baffled as to where to begin. I guess after the first of the year they are going to prioritize my conditions to my symptoms and go from there. All I know for sure is that the spinal surgeon is saying he needs to put a full rod in my spine, and another ortho surgeon needing to completely rebuild and fuse my feet and ankles because of significant malformations I was born with, but that nobody ever paid attention to....2012 could be interesting....

My blessings to you all~
Maggie
~RodeoRose
31 y/o. CM: 14mm.SM: Septated syrinx extending from C2-C3 thru T2-T6, Cervicomedullary kinking, Hypoplastic right maxillary sinus, Scoliosis L4-L5 w/ stenoses, Degenerative disc disease, T6 tumor, MVP, Pulmonic valve regurgitation
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Re: How to talk to my neurologist???

Postby pmaxwell » Thu Apr 05, 2012 10:15 pm

I was talking with a man today who is newly diagnosed with a idiopathic syrinx and was asking for advise on how to talk with his doctor. thanks everyone for your expereince. There is a lot of great information on this board.
Together We Can...
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Re: How to talk to my neurologist???

Postby karenb » Mon Apr 09, 2012 12:07 am

Hi Maggie,

I don't know how I missed your original messages... maybe it was the month-long episode of bronchitis?

First off, I truly think the best way to talk with a Neurologist is heirogliphics! My best luck has been with referrals - get a good doc who can't figure out what's going on, let him stroke your neurologist's ego a bit, and they're much more helpful!

I really hope they haven't touched your feet with a knife, and would strongly suggest giving orthopedic shoes a try before letting them do anything that involves cutting. There are still some really good pedorthists around, even if it does take a bit of searching.

Another option would be seeing a chiropractor, but just for your feet!!! They can do some really amazing things with the structure of the foot bones, and are much more gentle and patient than regular foot doctors. Just don't let them touch your back!

Karen

P.S. Who? Me? Punchy? Nah... I'm way too tired!
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Re: How to talk to my neurologist???

Postby Dcuster » Wed May 16, 2012 8:20 pm

yes that is exactly what I do, power of suggestion works with my NL. I just play dumb and put key words in there and BAM! he comes up with it on his own. They have to be made to feel they came up with it. I never go in using internet terms or medical terms etc. I use simply wording to describe something and then he gets it. I have been using this NL for 12 yrs now. My twin is now using him and not have a good go at it yet. I told her to let him come up with stuff and not tell him every thing she has had done over the past 15 yrs at once. Each time throw 1 or 2 more things in there. They have to feel they can help you.
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Pineal Cyst, C5-C6 fusion 2005, Lumbar L2-L6 w/4 level fusion with hardware 2006, adrenal gland tumor, 7-8 thyroid nodules, 2008 C4-C7 Corepectomy with hardware.
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