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View Full Version : Got a call out of the blue to go do an echocardiogram for splinter hemorrhages



~LUVMYFLOWERS~
03-02-2011, 05:42 AM
Hope you all are doing ok,
This is an update on my visit to my so called rumatologist with my splinter
hemorrhages that she said was a fungus 3 weeks ago, and i went to my pcp and he did a scrap and it came back neg for fungus and said is was
splinter hemorrhages prob due to my lupus.
Well i called my rummys nurse to tell her i went to pcp and the scrape was negative for fungus and told her to make sure she tells my rummy what he said that it was splinter hemorrhages, so 3 weeks ago she put a not on her desk of that info. Well tue march 1st out of the blue i get a call from the southern heart center for an echocardiogram test for today @ 1:30 and I
totaly freaked out! So i called my reumatologist office to ask what was going on she and why hadent they already mentoned something to me about it
as i had already told her of my symptoms for 5 weeks getting weeker, short of breath, severe leg weakness and pain and fever, and my weight melting off to
105lbs and have never been that small, and the splinter hemorrhages now covering 8 of my finger nails and now toe nails too.
And i ask her could the lupus or vasculitis be affecting my heart causeing
ENDOCARDITIS! She at that time tol me no it's a fungus.
When her nurse called me back yesterday I told her what were they doing the echo for and they had gotten me very upset with that out of the blue call
with possible endocarditis on top of everything else im batteling with already
and i totaly broke down and cryed got so upset didnt rember the time or date of test!
She said oh! dr. Harris just wants to check yourvheart out good, I ask who ordered the test and why.
she said my reummy called my pcp that did the nail fungus scrape and he told her he had only saw the splinter in 2 cases and it was paitents with heart involvement of endocarditis and he thought mine was either the lupus or endocarditis.
I didnt know he thought mine was possible endocarditis but he told my rummy that.
Then her nurse tryed to sugar coat is oh! we just want to be safe and ck your
heart out good, I told her this far in the game with all i have going on i do
not want to be left in the dark tell me streight out what you all are thinking and doing as far as my health problems as i have been through so much already, not to be beating around the bush with me , Just tell me the truth.

So i go today for the echo and will probly be a day or so before i get results
and i go to my new neurologist specilaist at the university thur , tomarrow.
Will let you all know the results of the test and visits.
Thank's for letting me vent on rheumatologist that need to go back to school or get in another profession! LOL! NO wonder we stay so sick.LOL!!!

Hug's and Love to all!! Thank's so much to all at WHL! Dont know what
i would do without you all!! Hope you all have a pain free day.~ Diane ~

Saysusie
03-02-2011, 08:18 AM
I know that you have been through so much lately and having to fight with doctors has not made it any easier. However, it now appears that your rheumy and your PCP are WORKING TOGETHER and that is a GOOD THING!! Also, I am so proud of you for standing up for yourself and for demanding that they tell you the complete truth and give you the whole picture! That is what they are supposed to do and it is just a matter of respect that they do.
Continue to insist that the two doctors work together for the benefit of your health and do not back down on demanding that you be treated with respect. Let us know how the test goes and how you are doing. We are here for you.

Peace and Blessings
Namaste
Saysusie

BonusMom
03-02-2011, 08:30 AM
Sounds like a couple of stressful days, Diane. You hang in there. Take a deep breath before the test. Let us know how everything goes.

~LUVMYFLOWERS~
03-02-2011, 05:49 PM
Thank's so much Saysusie for the encourageing word's! After 7 year's of rummy's and neuro's e.r.
visits, and i do belive every test and blood test in the book, And so many so called specialist and dr's even though i am usely a yes mam & no sir and use to have a lot of respect for doctors, but at this point any new one's i will kindly sit and listen & answer all questions
to my best, But when they try to beat around the bush or act like they dont know what to do with me I will surley stand my ground, and am very out spoken and have learned to ask lots of questions & i take my pen and paper with me to every visit as i have short term memory now
so i dont forget any thing.LOL!
And i know now that what ive been diagnosed with are all fairley rare but still rare complications of SLE LUPUS, SJOGRENS, & vasculitis But a good reumatologist should know of
all complications of the diseases even the rare ones. And it dose make my angry that for the last 4 years if they would of reconised or cared to look at the rare complications they could of had me on meds to prevent mine from going to my brain, and other vital organs.
So yes i agree every one that read's this please insist, change doctors or simply get up and walk out , when you know you're getting sicker and you body is giveing you clues that thing's are just not right and your doctor just wont listen.
God bless you Saysusie, and i will get back with you all on my results.
Thank's for the incouragement & Hope you have a great weekend! ~ Diane ~
I know that you have been through so much lately and having to fight with doctors has not made it any easier. However, it now appears that your rheumy and your PCP are WORKING TOGETHER and that is a GOOD THING!! Also, I am so proud of you for standing up for yourself and for demanding that they tell you the complete truth and give you the whole picture! That is what they are supposed to do and it is just a matter of respect that they do.
Continue to insist that the two doctors work together for the benefit of your health and do not back down on demanding that you be treated with respect. Let us know how the test goes and how you are doing. We are here for you.

Peace and Blessings
Namaste
Saysusie

~LUVMYFLOWERS~
03-02-2011, 06:00 PM
THANK'S Bonus Mom, Yes it has, just when i finaly get to my im gonna beat
this, and and try to start my healing process, and do my best to have a good outlook attitude even though by what mri's and specialist say, seem's im hit with something else from the
lupus ,sjogrens, raynuads or vasculitis. But I will take a deep breath sure gonna have to on this one also. Thank's so much for your kind word's and I hope you have a painfree night and weekend. I will surley get back with you all and let you know result's.
Have a great weekend! ~ Diane ~
Sounds like a couple of stressful days, Diane. You hang in there. Take a deep breath before the test. Let us know how everything goes.

tgal
03-02-2011, 08:34 PM
I agree with Carlotta (Susie)! You did an awesome job standing up for yourself in this matter. It is great to see people standing up and taking charge of their health. That is the best thing that I learned from this site and I am glad to see others learning it too!

magistramarla
03-02-2011, 09:46 PM
Diane,
You have really been through the wringer lately, girl. As the others have said, I'm glad to see some cooperation between your docs and the way that you are standing up for yourself.
Good luck with your appointment tomorrow. Let us know how it goes.
Hugs,
Marla

~LUVMYFLOWERS~
03-05-2011, 04:57 AM
Hi WHL Family, Hope you all are well,
Giveing you an update on my doctor visit to the teaching university with my new
professor of neurology. Well it is surley mind blowing at the difference in the care and the knoledge that these doctors have over my reg rumatologist and neurologist in the autoammuine diseases, and rare ones and the complications of them.
My reumatologist there had set this appt up with the new neurologist to get second oppion on the sjogrens and r/a and cns vasculitis.
And when i went online to search this new neurologist @ the university I saw where his second field of specialty was multiple sclerosis- neurology and was wondering why my reumatologist set me up with him. Well he ask lot's of questions, did some test in his office, close my eyes & touch nose, something with a metal weher it felt hot on foot but got cold as he went up leg, that let him know dammaged nerves in legs, he opened my medical files and read them , i had my first cd of mri with the 12 brain lesions he put it on computor and studdied it well. he couldent find my second mri on computor, After that i told him about the dizzy spell i had 2 weeks ago, he how it started what happened and had i had them before and how many.
Then he looked at me and said I do have sjorgrens and sjogrens is what has gone to my brain
causeing the cns vasculitis,( central nervous system involvement). DUE TO MY OTHER REUMATOLOGIST NOT CATCHING IT IN TIME! Ask me about my painful dry eyes and was every thing else dry, i said yes very bad and getting worse, he looked at my hands and skin
also literly drawing up from dryness.Wanted to kknow how long i had these symptoms, what all the other rummys and neuros dx me with & other test.
I ask him why i have been thruogh 3 reumatologist & 2 neurologist and none of them caught it
and would only say at first fibro, then a couple of years it was mctd poss lupus, sjogrens,
ryanuads, then here lately, dx lupus, sjogrens raynuads , poss scleroderma, cns vasculitis.

He explaned thet Sjogrens is a rare disease and reg reumatologist & neurologist just do
not studdy that in ther schooling there kinda like reg pcp'sthey may tough on it but thats all.
Where at a teaching University where you have professors of a specialty that is what they studdy and teach on is rare disorders & diseases & and research.
And he was the most kindest ,and knoledgeable, neurologist i have ever met, and was surley
working wit my reumatologist there that sent me to him and i know going through all aspects to figure out what all is wrong with me and doing there best to help me and get me to feeling better and the right dx and meds to slow this disease.
And that alone is such a Blessing and a Burden off me to know they are working so hard on me & doing ther very best, and actuly know very well about lupus, sjorgrens, cns vasculitis and all othere's.
Any way he said he wanted to do one more blood test that noone else had probly done on me yet it is called ( NMO - lgL TEST ) So when i got home i looked it up and scared me to death.
It is a blood test to test for ( Neuromyelitis Optica ) or the cammon name (Devic's Disease).
So my reummy there must of had that also in the back of his mind and not said anything
and so thats why he set me up with the neurologist - multiple sclerosis professor, at least
he's surley not leaveing a leaf unturned with me! But lordy that is a very deadly disease
and i guess my simptoms of the spells where my legs are weak and heavy and spasams,
and at times i cant hardly walk ,virtigo,double vision, and the rapid disability i am getting
may have led him to check out that possibility. Becuse devic's disease dose come along with sjogrens, and sle lupus.

So im still on my Roller CoasterLOL! SURE HOPING IT WILL HURRY UP AND STOP & LET
ME OFF!!!!!!!!!!!!!!! Havent heard on my echo cardiograham test results, But i surley
will call the nurse monday and see if they have results, surley should be back by then.

My new pro. neurologist said im on the right meds and i should start to felling better once the
IMURAN kicks in , said it will take it 3 to 6 months to start working!

Lot's of Love to you all And HUG'S!!!!!!!!!! Hope you have a great weekend! ~ Diane ~

tgal
03-05-2011, 05:55 AM
I am so glad that you finally have someone that knows what they are doing! Now that they acknowledge what you have they can begin giving your the correct meds. Please keep me posted! I will be thinking of you!

GoodDog
03-05-2011, 01:28 PM
Thanks for updating us and I'm glad you're finally being taken care of. You're in my thoughts daily.

~LUVMYFLOWERS~
03-06-2011, 04:49 AM
Thank you Mari!! You are alway's in my thought's also. I hope you have a great and
Pain Free weekend!! Load's of love to you!! ~Diane~
I am so glad that you finally have someone that knows what they are doing! Now that they acknowledge what you have they can begin giving your the correct meds. Please keep me posted! I will be thinking of you!

Peridot20_Gem
03-07-2011, 07:31 PM
Hello Diane,
My god mate you have been going through alot while i've not been on and i do hope to god it's not MS because i know several people with it and it is bad and very hard to live with.
It really looks like they going to town on you now to really find out and about time as well, hows your medication now and i am sorry to hear you in such a worse state and i've been thinking a great deal about you while not on but i was unable to do anything and i do really apologise.

Love you dearly well you know that already and my thought's are always with you mate.

((Hugs & kisses to you always)) xxxxxxxxxxx

~LUVMYFLOWERS~
03-08-2011, 02:32 PM
Hope you all are doing good today, Giveing you all an update on the call i got yesterday on
the result's on my emergency echocardiograham test, From my TOTALY INCOMPETENT
RHUMATOLOGIST, That is supose to be takeing orders from my rummy specialist at the teaching
university. Not good!!!! She got her nurse to call me with the results becuse she know's it
is her mistake for not listening and checking on what she should of.

The nurse said my Mitroal Valve and my Tricuspid valve in my heart is dammaged showing
blood regurgation going back into my heart that should be going out!
I Totaly freaked out heart started going ninty miles an hour had to take a whole xanax and
told the nurse to wait a minuint & let me get a paper & pen to write it down. Mind you I just had this same test not even a year ago & my heart was fine!
So i wrote all that down and then ask nurse was it Endocarditis, was it caused from sle or sjogren's or what, That ive been telling the rummy for the last 5 months something was wrong &
something else was going on becuse of the ongoing weight loss severe fatigue not getting better but worse, very short of breath, legs not working well & very weak, chills, fever &
would be out of breath just walking to my bathroom.
The nurse said WELL YOU JUST HAVE SO MANY SYMPTOMS GOING ON AT ONE TIME, Dr. harris
just couldent figure it out! I said OMG!!! that's why i went to a rumatologist becuse they are
supose to know autoammuine diseases & complications of them. HELLO! The nurse said
well i dont know if it's endocarditis or if lupus caused it or sjorgrens caused it, And the report
says it is mild and i have you an appt with a cardilogist for April 8th and he will have to look at your echo and tell you what caused it and and what needs to be done. Then the nurse go's to
saying well at least now you have got all these dr's working so hard togeather on you and to get it all figured out now and hopefully get you felling better! I Told her ive been going through this for almost 9 years now & had been seeing this rummy for the past 3 yr's and have gone down hill since till she finaly told me i was so complicated so just didnot know what else to do cause she wanted all blood work to tell her what autoammuine diseases i had, So she sent me to the university where she should of admited years ago and sent me then instead of slowley killing me.
So thats why im shotr of breath it says when the blood backs up back in the heart it pushes up in the lung's. This is a very dangerous heart problem she has caused me, So i just hope & pray
it's not had time to get very bad at this point. Just do not think i can handel any more envasive
test or the thought of heart surgery i realy just dont know where i can draw any more stregith
from at this time. This has pulled me down so far, even a deep breath is not working.

And im still waiteing on my other test my new neurologist took last week to see if i have
neuromyelitis optica the test was nmo-lgL devic's disease. Trying to deal with my heart prob and i cringe every time my cell rings waiting on the other test results is just about more than i can bear at this time. So i go to see my rummy specialist the 31st this month at the university i Will get him to get me a good cardiologist there at the university, no more local dr's for me.

Lot's of love to all , will give update when i hear on devics test results'
Thanks for being here for me!!!!!!!!!!!!!! ~ Diane~

Peridot20_Gem
03-08-2011, 02:52 PM
Hello Diane,
I just don't know what to say mate except that i'm really sorry to hear the bad news with everything else going on and i bet it as shocked your hubby besides yourself.
I'm just disgusted with since you've been a member you've gone back and forth with tests here and there and it's took till now to pick it up.

You don't think they're looking down the line of an heart op when you see the specialist and fancy getting a nurse to tell you such bad news, it really explains the tiedness you've been having more of plus breathlessness and i wonder if that's what's affecting you weight.

Diane i'm so worried for you mate and i really do hope they can help you quickly but pain free as possible, i'm off to tell ste because i just can't take it in with what they've found.

Thinking of you so much mate & all our love to you from this end ((Hugs & xxxxxxxxxxxxx's)) Diane

Your dear friend Terri xxxxxxxxx