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Heartbroken

This is how I was described by a Vanderbilt physition

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I think all of us are that. Challenging as in they don't know what to do yet. By the time we get to Vandy, Mayo, Cleveland Clinic, etc, we have been through quite a bit and think we are someplace where we can get answers. I know I go in armed with a list of questions. Pretty sure many docs would prefer that I just sleepwalk and blindly follow, but I look at it as a collaboration. 

Just smile and think, 'Yes, I'm a challenge. Hope you're up for it.'

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Then I would trust your primary. Especially if you are trying to get disability. He sounds like he has some experience with this.

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No he doesn't, once he saw those words, all he did he got rid of me and now I am with the new provider who is worse than him, I asked him to refer me to Vanderbuilt but he refused. No I am not thinking of disability because I need one more year to get retired. 

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When my beloved PCP left practice I went to the clueless Dr he recommended who was obviously terrified of treating me.  She looked at my diagnoses and meds and told me she was uncomfortable with polypharmacy.  She spent some time later on looking into dysautonomia and declared that my problem was all down to being hypermobile.  I am somewhat hypermobile but not that bad and by then my neurologist and cardiologist were positive it was autoimmune which was confirmed later by Celltrend testing.  To find a new dys aware PCP I signed up to Facebook (hate it) briefly and asked for recommendations in my area for a PCP.  I had one response for one associated with the local medical college and she’s great.  Knows about dys and treats a number of POTS patients.  

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p8d,

I am glad you have found a good PCP. 

Both of my PCP and case manager are clueless about Dysautonomia. They both heard it for the 1st time from me, they asked me to repeat it couple times. I really need to be taken more seriously. I am tired of switching and changing doctors.  

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I should have said that I joined my state’s Dysautonomia Facebook group and asked there.  I hope that you have this option, it’s very supportive and helpful.  Otherwise is there a medical college near you?  My new Dr told me that they are use to complex cases with poly pharmacy because they see sicker patients more routinely.

 I am so sorry that you are going through this.  I understand how very frustrating it is to try to explain it repeatedly.  I had one urgent care PA refuse to give me IV fluids for which I had a standing order because he had never heard of dys.  He was in the same medical group as my specialists and had access to all my records.  

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Thanks p8d for the suggestions. I am already a member of my state's Facebook group. Unfortunately no medical college near me. I am very helpless. 

 

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@Heartbroken - when I first became ill with POTS I saw many cardiologists, neurologists, EP's etc - no one knew about POTS ( they spelled it Pott's syndrome! ). My PCP was the only one who stayed at my side and supported me, he would read the articles I discovered and did tests that were recommended as well as tried different meds ( kind of poking in the dark ). He also read the copy of " The dysautonomia project " that @p8d recommended. Once I was officially diagnosed by my specialist he is still my only supporter. All other providers in his group of family practitioners are admittedly too afraid to treat me when he is not available, so I have to get treated in the ER or wait for his return. The ER docs know as much as everyone else ( very little ) but seem to have very strong opinions about what they should do for me if I get bad ( mainly " follow-up with PCP as soon as possible" ). So - if your PCP does not want to educate himself on how to treat you then it is his responsibility to refer you to someone that can. Maybe do you have anyone who is an assertive personality that could go with you to your appointments and remind your PCP of his responsibilities? Also - I have already asked for a review of my case by the insurance claiming neglectful treatment. This gets them on their heels!!!!! The insurance and PCP have to show that your needs are met and you receive proper care - which would be a referral to a specialist. 

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Dear Pistol,

Due to my insurance and financial situation I don't have much options. Both of my PCP and cardiologist are old school and both about to be retired, they are both in the same medical facility (Also the ER and the case manager). I somehow convinced my PCP to refer me to Vanderbilt for follow up (because I was seen there in the past), but my health insurance did not approve it (I called them and tried to convince them, they said NO with an aggressive voice. 

Do I have an assertive personality that could go with me? no, I have nobody, I always go a lone to Dr.'s appointments.  The last time my cardiologist told me I look good! Also he never told me verbally but he wrote in one of my reports that I have (Autonomic dysreflexia) (I read that at home, I can view my medical reports online. I was scared and called my PCP and told him that I am aware of having (Autonomic dysfunction) but not (Autonomic dysreflexia); He said so what? they are the same!. The same???? is this a mind game or he is out of his mind? I said nothing because I was shocked. It is true that I have had some neck and spine injury in the past but no Dr. had diagnosed me with that despite CT scan and MRI.

I am thinking of writing a detailed letter explaining all my untreated chronic conditions but I don't want to send it to my PCP neither to the case manager (She is not my case manager, she is all patients case manager). 

Should I send my letter to my health insurance or to whom? 

Thanks

 

 

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@Heartbroken - let me think and I will PM you

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