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Symptoms Flaring Up


pastordari
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Hi all:

I think I just need to vent a bit.

A couple of months ago my PCP refused to see me any longer because I sought a second opinion at the MVP Center in Birmingham despite her telling me on at least two occasions that she did not know anything further to do for my symptoms. She in fact diagnosed the NCS and dysautonomia about a year and a half ago. I was impressed that this doc in the middle of Arkansas jumped on this.

Anyway, I sought out a new PCP whom I have seen three times, I think. Once for allergies and the first visit to basically tell him my history and find out if he would be willing to work with me and the dysautonomia folks in Birmingham. He eagerly said he was. He was great; very nice, calmiing, intelligent,, and compassionate - this goes a long way with me! However, I began having symptoms a couple of weeks ago - dizziness, lightheadedness, feeling faint,, low bp, high HR . . . I am continuing to have symptoms and finaly saw the doc today. Very early in the conversation he said to me there is nothing physically wrong with you. I was fit to be tied! Worse, in my opinion, I began to cry. I cannot believe after all we discussed about MVP, dysautonomia and POTS on our first meeting he is now saying nothing is wrong with me. I am still SO upset. I've been told on numerous occasions, as have many of you here, that my symptoms are all in my head or some form of this message, but I had already cleared this territory with him. We had common ground, I thought.

I'm just devastated. I don't know what to do. My doc in Birmingham recommended florinef this go round. She wanted my PCP to prescribe the med and monitor it as Birmingham is 6 hours away. He refused to prescribe florinef. He doesn't like the drug. He did nothing today other than tell me he thinks I'm on too many meds. This doc wants to get me off all meds - beta blocker, klonopin, lunesta - everything that has kept me standing for the last year or so. I am panicked that I am going to get into a really bad place medically. I've been angry and tearful all day. I saw the doc first thing this morning.

I feel lost and scared and really dizzy and nauseous!

Thanks for listening (reading!) :(

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Dari,

Wow, sounds like you're having a really rough time! I'm SO sorry to hear about all of your dr. frustrations. I can't imagine how hard it must've been to find this last dr. who seemed to be on board and then told you today that there's nothing physically wrong.

One of the best things a Dr. can do is make you feel validated and one of the absolute worst things they can do is make you feel like it's in your head. Frustrating!

Just wanted you to know that we are here to listen and vent to...

Hang in here,

Lisa

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just wanted to say i am sorry u had a rough day. tommorrow will be better, if notonly cuz u won't see him again. i couldn't tellu how many socs i've seen. ii mean docs. hey,don'tlethim get u worked up, u know it's bad for us dysies.

call soc in birmingham's office, maybe they know somewhere closer, or know a friend of a friend of a friend. it is obvious to me that the when you spoke to him about dys before he just didn't want to look like an idiot, so he pretended to understand what you talking about, and what do you know he still came out looking like an idiot.

hope i made u smile alittle.

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I know doctors are just people like you and me, but we are just so very sick and just hope to be better someday that it's so hard when they choose not to follow specialist advise or just plain give up on us. My doctor recently stated that even though I've been tested for everything under the sun and have tried many different medications, he doesn't want to give up on me just yet. Completely freaked me out... because my thought to myself was "Okay, so I really am hopeless case" and without hope, what is there? Oh well, I'm feeling too icky to even worry about any of this right now.

Take care everyone,

Tammy

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Dari,

I can understand where you are and I want to iterate what someone said higher up the thread - the dr is protecting themselves because it is easier to diagnose something everyone has heard of than to say you have something more rare. I've seen several drs who were understanding to begin with, and then when I asked them to speak to others on my behalf backtracked like mad and when I asked them why I was told they were wrong originally and I must just have somatoform instead. I've had my specialist called a liar by these people as well.

No-one wants to be the person with a misdiagnosis.

BUT what about the misdiagnosis of telling us that we are to blame for our illness???? I discovered today that for 9 months my psychaitrist who is 'trained' (and I use the word advisedly) in physical long term chronic ill health had told my GP, orthopaedic surgeon and work that I am not physically ill. With *certainty* when he had told me he believed I was physically ill and the others were wrong I believed him so got him to verify my condition to other drs :blink: .

I guess the point is that everyone can get it wrong, and we live in an age of litigation so it's each dr for themselves.

Not at my best today so I hope this makes sense!

Becca

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Thanks for the hugs, Amy. That's probably the most helpful thing right now!

Actually, there are few doctors to choose from in my town. The population here is only a bit over 6000. I've tried almost all the docs except for two who do not take appointments and the wait is often 3 hours or longer to be seen. So, they are really not an option for me!

I've gone to the next town 20 miles away for one doc, but she got totally frustrated with me and has refused further treatment.

There is a city 1 1/2 hours from here that probably has someone that would be good, but I'm needing medical attention so often these days that all my time and energy would be spent in the car going to doctor's appointments.

I do see a doc at the Dysautonomia Center in Birmingham - 6 hours away. However, this is infrequent. She kind enough to treat over the phone when possible, but that doesn't always work. However, having someone completely affirm what is going on with my body, offer explanations, and HOPE is definitely worth the time and the drive. I am so thankful for Dr. Moore. I don't know what I would do or how I would cope without this supportive board and the folks in Birmingham.

I'm getting tired of living in the boondocks where things are light-years behind the real world!

Dari

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Dari,

I grew up in a town of about 6,000, so I understand your problem. Some of my aunts and uncles who still farm live more than 40 miles from the nearest doctor, and more than 70 miles to the nearest emergency room!

Sometimes I forget that there are rural places in other parts of the country, too!

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