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Ready to give up on finding a doctor


AJVDK
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I know I am tring to stay positive, and keep my head up, but after yesterday, I am ready to give up. I am starting to beleive there is nothing going to help. I can't beleive how how cold heart doctor can be.

I went to my doctor appointment yesterday. My 1st appointment was with the pacing team. The ywo women hooked me up, and started to run the pacer test, and recive all the information from the pacer. The women asked me who I am feeling. I told her how I feel my chest has been feeling with some heart racing again, and odd beats where the pace kicks in more like skip beats. She said well the pacer only show one race heart heart that lasted in was on 1/13/06 and was 180 beat...... I said I know there got to be more. So the looked at the setting it only records if my rate it over 175 bpm. Well to me that kind of dumb as when I got tacky before it was 140-160 range. So they got done with the pacer and where looking for the holter result, which where not done yet, so I still don't know what that showes. Then she says to me you haven't been hear in a year, and you have gone for referals, what would you like us to do for you? I am like HELLO why do you think I am here. I nicely said I am hear to try to receive local help and treatment with my POTS/ NCS/ my pacer you put in, and help me in the treatment. ( Right now I am hot, I am trying to keep it togeher, and this was the resaon I left, I alway thought they didn't care, or I wasn't some east fix.)

So they move to over to another room where I waited for more then an hour for the PA to come. Mean while I can hear them making a few commets out in the hall. Well the pa finally came in and said well I haven't seen you in a while. He said tell me whats been going on I told him I went to Uof I and they said I have POTs, and that I went to Cleveland and they said I have low blood volume, and rapid blood flow, and at Mayo they said I have NCS, and POTS. He told me well ok what do you what from us? and again I told them what I was looking for. I told him about the results from the TTT, and the other blood test, and ECG, I had the mediacl records with me. I am like do you want to see them. He said no. He said back before I left they said they beleived there findings where I had neurally medicated syncope. But it doesn't mateer because they are all the same. He told me it doesn't matter if I have POTS, NCS, Neurally medicated syncope. He went on to tell me he is surpised I have not out gone it yet as I am 26, and find it hars to belive I am getting wrose as almost everyone out growes syncope. So I asked do you thing I am going to get better? He said I don't know I thought you would have by now.

This is really good they did a TTT test back in 2000 there, and then a new TTT in cleveland in 2005. He told me they no longer do TTT as they really don't find them to be usefull, but he would had bet $100.00 that I would had show B/P changes. He then when on to say that we treat them all the same, no matter if it is POTS NCS, of neurally medicated syncope. He said I should increase my florinef, and midodrine. I should follow up if things don't get better, or I could always go back to Mayo, or Cleveland. ( Can you belevie that, I only when for the referals, because I was not getting better and not receiveing the care I needed from them!)

So I don't know what to do, I really don't think they are going to be any help. So I am beganing to think its time just to give up on finding a doctor here, but with my new insurance I am stuck here. I don't know what to do. I am begaining to think I am crasy, or losing it. I can't belive how doctors/pa's can treat people. All I want is feel better and get on with my life. At 26 I don't want to be stuck in my house, I should be working and having a life, that all I wan't.

Sorry to vent I just don't know where I go from here!

Amy

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HI,

I really feel for you. I come across the same situation. It takes me a few days to recuperate then I pick myself up and start the search again. It's been 5 years of being housebound and half of it was bedridden. My life is slowly improving because I keep pushing to get better treatment. So far, I think I will continue to look all my life or until I find the answer.

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I am so, so, sorry, Amy. I wish I could do more than say a few words. At least you are not alone here.

Do you live in a big city with choices? Is your doctor list short? Do they assign you a doctor? Maybe you have posted all this before, but there are so many people here I lose track.

OLL

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I am so sorry about your frustration. I can so relate. I went through the TTT in 2001 at 26 after a divorce. They told me I had NCS but probably the divorce and stress had triggered symptoms and to give it some time and I would be fine. Here I am 4 and a half years later, worse not better. I, like you, fought for a long time to get back my old life, I just wanted something slightly normal again. Now, I realize, it is what it is. My friends and I have a quote. "We take what we can get." That makes me feel better when I go out for lunch with them and have to be back home in bed 45 minutes later.

I went through a guantlet of doctors before I found an internist I love, and the ironic thing is, he's saying the same thing my last doctor said, only he put it really simply for me since I'm kinda thick headed. He basically said, "Look, you have this thing and we don't know alot about how to fix it once it's broken. We'll try different meds, and do different things, but your life is going to change and there's not a lot we can do about that." I was heartbroken because I work at a theme park and have my dream job. I had my future pinned out on paper and was very active. My poor doctor had to give me that same speech many times over the past year (like I said, I'm thick headed!).

Finally, after a while, I stopped fighting to get back to what I was and just took a deep breath and looked around at where I am. It wasn't in the plan, but there's a reason I'm here. I go to Vanderbilt in April, and unlike past doctor's visits, I'm not looking for my old life. I'll take what I can get. And one day, if I am ever able to get out of my stinkin' house as I could in my past life, I know it still won't be my old life, because before I couldn't appreciate how lucky I was to walk up a flight of stairs, or have the strength to go dancing. If I ever do get back out there I will have an appreciation for life most people won't ever have. And if I can't ever get back, I still have an appreciation for whatever I can get. Good luck and don't give up. You may not find the answers about your illness that you want right now, but you are young and time is on our side.

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I'm so sorry for the trouble you're having finding a doctor to help you. You are not alone!

After reading about Lyme disease doctors (LLMD's) on this site, I found a local one on my insurance and he is great. I don't think I have Lyme and told him so, and he said, "All of these tests we are running may come up negative. But I still have a patient that I need to help." Wow! He sees a lot of chronically ill people (CFS, etc), and that helps.

You may want to try the Lyme-net web site and see if any of those docs can help you. Mine is an internal medicine doc, who is familiar with POTS, TTT's, etc. It might be a good next try!

Hang in and NEVER give up. There IS a doc out there who will help you!

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Well I just got back for the doctor appoitment with my PCP. I told him what happened the day before and he when ahead and collect the cadrio office and expressed his concern to them. I am happy to have him on my side. He siad we will find a doctor to take the case and follow up with me regular, and if they will not, then we will have to look into others to help find the care I need.

So please keep your fingures crossed I am hoping to find someone that will listen here close to me.

Thanks for all the support you all have been giving me!!!!

Amy

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Amy

I am so sorry for your experience! it is so disheartening and can really take the wind out of your sails, to say the least.

as your signature says, a journey begins with one step. you've actually made more than a few just with this doc, even tho you didn't get satisfaction. you know now who NOT to go to and maybe have gotten some ideas of who to go to.

do you have a PCP that could be on-board? I've been so lucky that mine is awesome. you may have better luck going with just a "plain" doc who will be the local person you need if s/he is open to that.

as frustrating as it's been, it's almost part of POTS itself. continue to be strong and know that you are supported here.

(do you happen to live in north central ohio? i'll give you my doc's name! :) )

wishing you strength, peace and joy,

with love and light,

lulu

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hi,

your visit to the doc sound like we so to the same one .is he in the dayton area by any change? i have been fighting thing doc sh.t for 5 years . i am so so ready to give up on some days them i am back ready to fight again thats life.we have good days and bad days.we are only human.right now iam in what my kids call rebelling phase by refusing to go to ANY doctors.so all i take is paxal for the familys well being,.hopely soon we WILL we energize reselve for anouther round to fight soon.

keep fighting .

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