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RE: Who is the Moron here? - 1/6/2010 7:27:28 PM   
Acer49


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quote:

ORIGINAL: SailingBum

Whenever I'm prescribed a new drug one of the first things I do is read up on the side effects.  About a year maybe a year and a half ago.  Doc told me to the take Simvastatin to reduced my lipid count.

So I read up on it the side effects didnt seem to awful so I started taking 40 mg a day which is a HUGE dose.   I called the doc the very next day with symptoms of some of the side effects ie muscle weakness and nausea.  Doc was like keep taking it.  I remember thinking this is nutz. I am not taking this stuff if I am going to feel like this.  So I reduced my dose to 20 mg a day <actually more like a couple times a week cuz my lipid count was "fine" and I don't want to take any more drugs than I have to> and the side effects eased considerably.  I actually gave wade a years supply of Simvastatin cuz i only took it a couple times a week.

So last spring a trip to ER for heart. everything Fine   Summer still having issues Chest X ray blood work another EKG, stress test. heart monitor for 3 weeks.  You name the heart test I have prolly had it TWICE.  One Doc told me stress test was exceptional.  Another doc asked me if i was a athlete, laffed and told him uhhh not so much.

Started going to the gym in November mild workout sent my body into not such a good place.  Let me tell you heart palpitations will scare the hell out of you.  Imagine your heart feeling like it's going to beat right out of your chest. I liken it to take a hammer smash your thumb that intense throbbing is what your chest feel like. Most times HP are nothing to be concerned about.  Operative words are "most times"

Met again with heart doc early December said keep working out but be "mindful of your body"  So Im like doc most times I have 3 of the 4 symptoms of a heart attack.  Tightness in chest, Heart palpations, Nausea.  The ONLY symptom I don't have is shortness of breath.  He prescribed a wonder drug that will not only stop HP.  It lowers the heart rate and reduces blood pressure.  Which after reading up on the drug I will not take.

Now keep in mind at least 5 different heart docs have looked at my file. 4 of the heart docs I met.  I spent over 3 hours consulting with 2 of the heart docs.  In other words not your typical 15 mins apt. I did hours of research as well I was very well informed.   So the whole time I'm thinking these docs have to be "missing something" 

I have countless hours on the web looking for possible causes of my heart issues. Finally I think I have it nailed Down.  It's prolly the Simvastatin or  a low potassium intake.  I reread the side effects of the drug and although they didn't bother me at first Im thinking about 4 to 5 months later is when my heart issues showed up.  So I  am drinking OJ and stopped the drug.  So who is the moron here, my six that's right 6 <including my primary care> freaking docs that missed the Simvastatin or the low potassium or me for not rechecking the side effects sooner?

According to the New England Journal of Medicine the VA health system is by any standard they measured is by far better than private health care.  Survival rates, preventive care, Treatment systems.  <The VA and the military health systems have nothing to do with each other>  The reason I bring this up is supposedly I was getting the best care in the US, And it still sucked,  According to WHO the World Health Org the US ranks 37 th in the world for health care.   Although we outspend as a percentage of Gross National Product at least 2 to 1.  Canada ranks 30th  France is # 1

As I was explaining to mom and her ER doc as I thought she was getting really lousy care during her 2nd visit to ER in a week.  Doctors are not nearly as smart as you think at least in the US.  And prolly more Important as Dad used to say "Doctors bury their mistakes".  According to dad the killed his dad.  They almost killed mom when they misdiagnosed her hernia when in actuality her heart was blocked 90 % It is your best interest to keep a sharp eye on your doc.

If I can prevent one misdiagnosed person It will have been worth it.

BadOne






No, doctors don't know it all and if one is smart, they will check into side effects of medications. We are ultimately responsible for our own health.

< Message edited by Acer49 -- 1/6/2010 7:28:00 PM >


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RE: Who is the Moron here? - 1/8/2010 11:15:23 AM   
Lizbetbathory


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I am going to post a quick run down of soemthing i posted on a board about eds....I am a 26 year old female with type 4 ehlers danlos syndrome. I also have severe hypermobility. As a kid it was just cool to dislocate something to freak out the other kids. My parants never really thought it was anything really bad just an oddity.

Then about 6 years ago i was in a car wreck. I dislocated my left shoulder and couldnt get it bacck in... long story short here I had a SAD repair and was in constant pain. I went to a pain managemnt doc who noticed my hypermobility. he told me about EDS and was prettty sure I had it. a biopsy followed adn sure enough I have it and the most dangerous type.

Since that time I have had so many problems with my left shoulder that the Doc's and nurses at the ER knew me by name. To quote asome of them in thier eyes I am a drug addict. I am nuts. there is no such thing as eds. I only want attention. ive gone thru doc after doc. in the last year i had a left shoulder fusion and due to another car accident the same story is being repeated on my right shoulder. I had an SAD repair on that in april... it didnt work
I went to see a new Doc today  full of hope because this guy was suppose to specialize in traumatic dislocations and was suppose to understand what eds is and what it entails.
When I got there I had to do x rays which they ended up dislocating my right shoulder.... but i was actaully happy for that because then I stupidly thought gee they can see how easy it happens now" . then i saw the PA he maneuvered my arm and my shoulder would rottate out of socket and back in .. he actually turned pale. when the Dr comes in he examines me and also maneuvers my arm in all different way.. each way he did it, it dislocated in some manner. He asked me to show him how hyper mobile my joints are well when i am standing and shift weight from obne side to the other my hips pop out. and go back in... i show him that. i showed him that if i try to turn a certain way my knee rotates partally out of place. and my fingers and my jaw... and my ankles..

heasks me what do i want to do. I told him i want to be able to live with out having to either go to the ER every week or wrenching my arm back in. He asked me if i smoke i said yes but i am quitting and that is when he told me this " even if you stopped smoking i would do any surgury on you." ok so then what  i ask and he says ill send you to PT umm well great my insurnace doesnt cover it . i cant spend 450 a week on PT for 12 weeks besides the PT is to strengthen my muscles... (sarcasm here) apparntly LIGIMENTS HAVENOTHING TO DO WITH KEEPING YOUR JOINTS IN PLACE!!!! I know muscles play some part in it but if i lift a half gallon of milk say, then my wrist and shoulder seperate.... so there goes PT...
well what about pain meds esp after they dislocated my shoulder? NONE i got a broucher on senior pain management place and was told to call them, so i did .. 6 to 8 weeks to get the medical records... 6 to 8 weeks to decide if i am a canadite for the place and then a month to get an apt.

If i wanted drugs to get high, well my parents named me Stormy for a reason...  they are hippies if i want drugs i could get them, but I am not wanting to get high all i want is to run my business adn to play with my daughters. I am so close to just losing it all. I hurt so bad  and my shoulder is so unstable i cant give my kids a hug  ot button my shirt or wash my hair by my self. please some one help me. I am at the end of my rope and cannot live like this any more.



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RE: Who is the Moron here? - 1/8/2010 11:46:49 AM   
LafayetteLady


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Lizbetbathory,

I'm so sorry you are suffing. Honestly, I had never heard of this disease, so I did a search. One place the Mayo Clinic had some information. http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706

I know how difficult it can be to find the right doctor and the right treatments. Have you researched on line? When I typed in your disease, I did get a lot of hits. The best patient is an informed patient. Go to the sites, read everything you can, especially the forums that any of the sites may have. At the very least you will be able to find others who can tell you how they have managed to cope.

The other thing to look for on those sites are references to doctors from the forums posts that others found helpful and see if you can find any clinical trials. From the little that I read, it seems that this is one of those things where not a lot can be done other than manage it.

I know how hopeless it seems, but please don't lose hope. Your daughters need you, and you already know that. As much as it sucks, you will need to just keep searching and searching until you find the right doctor or groups of doctors that will help you manage this insidious disease as best as you can.

Best wishes and my prayers are with you.

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RE: Who is the Moron here? - 1/8/2010 11:48:40 AM   
Lizbetbathory


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thanks ive done lots of research but it isnt easy to find a doc out of state who willtake me on and for me to be able to get to them. I cope decently but of course some days are better than others ya know?

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RE: Who is the Moron here? - 1/8/2010 12:16:48 PM   
LafayetteLady


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Of course. Why do you need an out of state doctor? Your profile says that you are in St. Louis. That's a pretty big city, there must be a teaching hospital around. Yes, I know no one wants to be a guinea pig, but if you can find the treatment you need, then that is what counts.

A teaching hospital or clinical trial (especially the clinical trials) mean your insurance doesn't matter, everything is covered. With a teaching hospital, your condition is rare (from what I read) so it would be an opportunity for them to really teach something that they wouldn't come across otherwise. Finding them is likely going to take a lot of work on your part with phone calls and such, but in the end, I think you could find something very helpful.

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RE: Who is the Moron here? - 1/8/2010 12:26:08 PM   
sirsholly


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quote:

ORIGINAL: Lizbetbathory

thanks ive done lots of research but it isnt easy to find a doc out of state who willtake me on and for me to be able to get to them. I cope decently but of course some days are better than others ya know?
can you call your former doctor (i am assuming you left his/her care because you moved out of state) and explain the situation to them?
Ask for a referral from him/her (doctors have resources that we do not have access to) then (this is the big one) request a letter of introduction be sent from your former MD to the new one that is recommended, along with your records (a signed release will be needed). Ask that a copy of the letter be sent to you and once you have it, call for an appointment.

Hang in there!


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RE: Who is the Moron here? - 1/8/2010 12:30:59 PM   
Lizbetbathory


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ive been to every hospital here teaching and other wise there isnt anything they can or will do now. as for calling my old doc to get a referal it didnt help much ...... he just sent me some where that had no idea what to do.... 

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RE: Who is the Moron here? - 1/8/2010 12:37:24 PM   
sirsholly


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quote:

ORIGINAL: Lizbetbathory

ive been to every hospital here teaching and other wise there isnt anything they can or will do now. as for calling my old doc to get a referal it didnt help much ...... he just sent me some where that had no idea what to do.... 
quote:

all i want is to run my business adn to play with my daughters. I am so close to just losing it all. I hurt so bad  and my shoulder is so unstable i cant give my kids a hug  ot button my shirt or wash my hair by my self. please some one help me. I am at the end of my rope and cannot live like this any more.


Have you seen a mental health professional? You need all the coping skills you can get right now...


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RE: Who is the Moron here? - 1/8/2010 12:45:18 PM   
Lizbetbathory


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yep, I talk to them about once a month. I think my biggest frustration is this: I was getting up a few minutes ago and my knee dislocated. I put it back in but of course it does hurt like a bitch. I called my doc and asked him if he could refil mt perscription and he said no my shoulder didnt dislocate.... so i am not in pain...... notice it was my knee that went out...... I cant get a new doc with out a referal with out him and he wont give me one. missouri medicaide is a pain in the ass. It is really frustrating not being able to live my life in the manner i wish I do the best i can for all involved but damn can it be annoying!  funny story about my joints... was having sex with subbie he is 6'10 weighs almsot 400 lbs im 5'3 130 well both my knees and hips went out .. i was on bottom..... my roomie had to come in and " un do" us because i couldnt unlock my legs... poor guy was hurting worse than i was! he said it was like a vise grip! There are always good sides of things and i try to look at those..... thanks you2 for listening to me rant some times that is the best medicine!

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RE: Who is the Moron here? - 1/8/2010 12:49:17 PM   
sirsholly


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quote:

I called my doc and asked him if he could refil mt perscription and he said no my shoulder didnt dislocate.... so i am not in pain...... notice it was my knee that went out......
The issue from the doctors point of view is he has never treated you for a knee problem, so he really can't prescribe a medication for that.

Personally...i would have lied through my teeth and said it was the shoulder again.


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RE: Who is the Moron here? - 1/8/2010 12:50:31 PM   
sirsholly


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quote:

I cant get a new doc with out a referal with out him and he wont give me one. missouri medicaide is a pain in the ass.
irregardless of the health care provider...why is he refusing a referral?

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RE: Who is the Moron here? - 1/8/2010 12:50:49 PM   
Lizbetbathory


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nah he has treated me for my knees he just doesnt liek to deal with me cause i wont put up with his bull shit... i already called the head doc of his practise to get some helpfrom one of the other docs.... I think this doc just doesnt liek me cause i broke his nose:(  i was sedated and came out of it violently and kicked him on accident.


< Message edited by Lizbetbathory -- 1/8/2010 1:05:32 PM >


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RE: Who is the Moron here? - 1/8/2010 1:06:27 PM   
Lizbetbathory


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he is saying that my insurance is holding it up .... my insurance is saying he is.... its a whole cluster fuck.....

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RE: Who is the Moron here? - 1/8/2010 1:16:06 PM   
xxblushesxx


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Call them both on three way and get an answer!!

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RE: Who is the Moron here? - 1/8/2010 1:21:08 PM   
Lizbetbathory


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you know ive actually tried that! but it didnt work well so im trying to get a copy of what each is saying but so far no l;uck



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RE: Who is the Moron here? - 1/8/2010 9:19:14 PM   
LafayetteLady


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You should be able to contact medicaid and get a different primary care physician.

ETA:

One of the reasons that you are having some trouble is because your condition is rare. That's why I suggested the internet search. I did see a couple of sites that were dedicated to your condition. They usually have forums where you can message with people who share your condition. They can be a wealth of information.

Also from the little I read, it seems that there isn't a lot that can be done, there is no "cure," only management, which involves a pain management doctor. Those are hard to come by on medicaid, I know.

As Holly suggested, a mental health professional would not be a bad idea. One of the biggest issues people with chronic pain has is the depression that it causes (I know all too well). With most medicaid doctors, they won't prescribe mood stabilizers, so you need to go to the mental health people for them.

The main thing is not to give up searching.

< Message edited by LafayetteLady -- 1/8/2010 9:24:25 PM >

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