Seeing practioner doctor tomorrow

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Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/28/2008 2:09 PM (GMT -7)   
thanks to all of you educating me, I can and will take a more active role in my disease(s).  I have the two blood tests written down that you told me about Ginny, and I have the 11 symptoms of Lupus that many of you provided, written down, and there is six of those symptoms that I have.
 
Not until I read a new person's post did I realize what you all meant when you said you had loss of hair.  I thought you just meant loss of hair on the head.  but apparently this is not the case.  I have no hair on or under my arms, and none on my legs.  And this has been the case for years.  I thouht the loss of hair on my body was due to age.
 
I have quit taking arthrotec for awhile, because I saw blood in my feces.  My heart doctor warned me that this would happen, and that when it did, I would have to stop taking it and other meds like it.  that leaves narcotics, and I do not wish to start them.  but may have to.  But for now, I am just letting the days pass, and see what happens, when arthrotec is out of my system.
 
Haven't done much this past few days except lay on the bed.  Heart burn so bad at night it is excruciating.
 
Thanks to all of you again.  Will let you know what my GP says tomorrow, and when he gets the results of the test tHat I am going to ask him to take.  aout ten days I think
 
Next month will be really busy with two tests on my heart, and vascular system, and then a sit down with the heart doctor on the 22.  and on the 23rd I will see the rheumy again.  And hopefully i will have enough info by then to question his questioning of why i might not have lupus.  I do understand his hesitancy, but I don't understand his efforts to disallow the diagnoses contemplation at all.  After Dr. Marlowe died, my tests were not positive enough, so I probably did not have lupus.  Now they are more than positive enough, and it still isn't enough.  Not going to get angry though, just ask him questions.
 
most of  you waited for years too,  to get the dx of lupus, and because you did it before, I feel as if I can do the same.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/28/2008 2:16 PM (GMT -7)   
(((((((( Hester )))))))

Many of us have quit pestering about the diagnosis. It is really more important that your rheumy is "treating" your disease. Often, they do this w/o a definitive dx on your chart.

A lot of us have been dx'd and then un-dx'd. Its a real energy thief. I refuse to worry about the dx any longer . . . just so the doc is tracking my symptoms, treating them, making sense to me, and watching for adverse affects of the meds and the disease.

At first I really "needed" a dx to affirm all that was happening to me and to "prove" to those around me that I had a serious problem. Now, I only care about doing what is good for my body. I don't care a wit about others anymore . . . except hubby . . . and I am so blessed that he and others are so supportive.

I hope your doctor appointments go well. Would you let us know how things go???

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/28/2008 4:37 PM (GMT -7)   
I hope your doctor appointments go well. Would you let us know how things go???
 
I sure will.  I think Dr. Aganobi will do all the tests I ask him to do, and will send the results to the rheumy when He gets them.  and I think he will make copies for me too.  Anyone would think Dr. Aganobi was an old country doctor, if he wasn't from Nigeria.;)  He is a good man.  his clinic opens at 8:30 every morning and doesn;t close til six in the evening.  you can make an appointment if you choose to, but walk ins are always welcome.  I find it easier to just walk in.
 
I guess I am hung up on that diagnoses because I tried to tell Dr. Aganobi's assistant so many times that I have lupus.  and for the same reason that you and others did I guess, I need to affirm.  Maybe I just need to let go of it, and let things be.  Lord knows there is enough other stuff to be worried about.
 
I hate having to turn loose of my arthrotec.  It doesn't take all the pain away, but enough is taken away that I have more use of my right  arm and shoulder, and right leg.  but they told me that a bleed could start inside and I wouldn't know it, except for the blood that makes it to the outside.
 
All of it just seems too much sometimes.
 
thank you for caring Rosie.
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/28/2008 7:16 PM (GMT -7)   
Hi Hester,
 
Oh, please let us know how tomorrow goes.  I know it gets so overwhelming doesn't it.  Sometimes I don't know if I can manage it.  I feel like I'm losing my mind.
 
Your doctor sounds like a nice man with a good heart and is eager to help you.  You have a lot of tests and appointments coming up don't you.  You'll get through it all.  We're here for you!
 
Have a good rest tonight, talk with you tomorrow,
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/30/2008 6:05 AM (GMT -7)   
ginny said...
Hi Hester,
 
Oh, please let us know how tomorrow goes. 
I got a copy of the results of the SLE blood test, and they are   
 
 Sed Rate (ESR) 50H
 Anti-nuclear antibody (ANA) Positive ABN 
 ANA Titer 1:2560
 ANA Pattern  Homogenous
 
And I also asked him to take blood for the things that you suggested Ginny  the Antiphospholipid Syndrome and the Anti-Cardiolipid antibody.  He will probably get the tests  back in a few days, maybe ten days, and will call me into the office, to give me the results. 
 
It is overwhelming Ginny, and I am not much of a courageous person when it comes to talking to doctors.  I forgot to ask for Nexium samples.  But they forgot three of my prescriptions, and messed the other one up. I usually don't do anything at all the days I go to the doctor.  It burns up my energy, what little I have.
 
Thank all of you for caring
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/30/2008 7:18 AM (GMT -7)   
Wow, you have a pretty high sed rate and a really high ANA. It will be interesting to see how your other labs turn out. I know what you mean about not doing much on doctor days. Just the drive and the waiting and the vist wear me out too. I hope you are getting rested up.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/30/2008 9:06 AM (GMT -7)   
Hi Hester,
 
WOW. Your ANA titre is VERY high.  Your sed rate is moderately elevated.  When you have a lot of bad symptoms it can make its way to 100 with no problem.  Mine was 100 when I was diagnosed. Keep an eye on that one.  
 
Are you still on prednisone?  If you are, stay on it. 
 
Yes, those other blood tests will take about 10 days to get back, unfortunately.   
 
I know it's difficult to communicate with doctors, especially in these early stages.  But you MUST get proactive and assertive.  It's the only way you'll get better.  The more you learn, the easier it'll be to get what you want and need from your doctors.  I have found that if I can talk like doc, I get much better care and faster treatment.  Plus, it takes the fear and unpredictable nature out of living with this disease.  Like the saying goes, "Knowledge is power".  It's very true! Always write down what you need from your doctor's visits.  Then you'll never leave without the things you need.  
 
Gain wisdom about your body and how it works.  Just in general.  If you know how the body works, how the organs work together, etc, it really makes understanding any illness easier and less stressful.  I'd encourage you to get a current book about the human body.  Sort of become a med student!! LOL.  When you have knowledge and wisdom, there is no room for fear. Or, less room for it anyway!
 
I don't think you'll be waiting years to get this diagnosis Hester.  I'm encouraged for you and hopeful that you are on a very fast track here.
 
Lots of love
Ginny
 
  
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/30/2008 9:41 AM (GMT -7)   
hippimom2 said...
Wow, you have a pretty high sed rate and a really high ANA. It will be interesting to see how your other labs turn out. I know what you mean about not doing much on doctor days. Just the drive and the waiting and the vist wear me out too. I hope you are getting rested up.

I want to see how those other labs turn out also.  I don't know what to expect from them.  I have wondered in the past if Lupus might cause heart trouble, and stroke.  and it seems it does in some people.  I am guessing that plaquenil and/or prednisone would be a defense against this?
 
And I have been resting up.  Seems today is worse than yesterday when I got home from the doctor.  But it will change.  It always does.
 
thank you Hippiemom for your response.  I  had no idea what the numbers meant except that they were all in the abnormal level.
 
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/30/2008 1:06 PM (GMT -7)   
Hi Hester,

You and Ginny may have been posting at the same time . . . so make sure you check out her informative response (just above yours).

I totally agree with Hippi and Ginny. I take very specific notes before a doctor's appointment. I type them out on my computer and bring it with me to EACH doctor appointment. There is a summary about how to do this in "Lupus Resources" (link at the end of my signature). The post is toward the bottom of that topic. It really helps me a lot. I always make sure I give the doctor a copy and hold a copy so I can refer to it during the visit. My rheumy actually uses my sheet to write his notes on. Then he adds it to his file.

Will be watching for your updates.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/30/2008 3:02 PM (GMT -7)   

I must have been writing when Ginny was, and would have missed her post if you had not pointed it out to me.

Thank you Rosie

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 9/30/2008 3:20 PM (GMT -7)   
WOW. Your ANA titre is VERY high.  Your sed rate is moderately elevated.  When you have a lot of bad symptoms it can make its way to 100 with no problem.  Mine was 100 when I was diagnosed. Keep an eye on that one.  
 
Well I can't get my cursor out of this quote, so will respond to you this way wink
 
I have started a file, and will put everything into it as I get copies of it.  And I will keep my eye on the Ana thing, and sed rate. and the Ana titre.
 
Are you still on prednisone?  If you are, stay on it. 
 
I am not on prednisone yet. I didn't ask for it, so I didn't get it I guess.  I can ask my rheumy to put me back on it.  I really did not want to start it again, because it made me gain so much weight.  but like someone else said earlier, if all you can do when you are skinny is lay on the bed, then what is the point?
 
Yes, those other blood tests will take about 10 days to get back, unfortunately. 
 
I am anxious to find out about that test that tells me if Lupus could have caused my heart attack and bypass. 
 
I know it's difficult to communicate with doctors, especially in these early stages.  But you MUST get proactive and assertive.  It's the only way you'll get better.  The more you learn, the easier it'll be to get what you want and need from your doctors.  I have found that if I can talk like doc, I
 
That will take some practice Ginny for me.  I can do it, I just have to memorize some things, and listen to all of you, and I will get educated.  but just the education itself will not find me talking assertively to doctors.   I have to figure out what is humility and what is asserting one's rights.  It is a traditional thing.  Cherokee people are not supposed to sound like they are bragging,  humility is the path to walk.  but sometimes, like now, I have to learn to be assertive so that I can get some of my energy and strength.
 
get much better care and faster treatment.  Plus, it takes the fear and unpredictable nature out of living with this disease.  Like the saying goes, "Knowledge is power".  It's very true! Always write down what you need from your doctor's visits.  Then you'll never leave without the things you need.  
 
I can do this.  I can write down what I need for the doctor to do for me when I see him.  that isn't bragging it is asking a doctor for help, and that is his purpose as a doctor to give us what we need, if he/she can.
 
Gain wisdom about your body and how it works.  Just in general.  If you know how the body works, how the organs work together, etc, it really makes understanding any illness easier and less stressful.  I'd encourage you to get a current book about the human body.  Sort of become a med student!! LOL.  When you have knowledge and wisdom, there is no room for fear. Or, less room for it anyway!
 
I don't think you'll be waiting years to get this diagnosis Hester.  I'm encouraged for you and hopeful that you are on a very fast track here.
 
Lots of love
Ginny
 
  Thank you Ginny so much for your advice and perseverence in showing me the path that can take me to a better and safer place.

And thanks again Rosie for telling me about this post from Ginny.
 
(Post edited to remove Quote Box fronm entire post)

Post Edited By Moderator (AlwaysRosie) : 10/1/2008 7:08:33 AM (GMT-6)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2008 6:09 AM (GMT -7)   
You are welcome Hester! I hope you don't mind, I edited your post to get rid of the big quote box over the whole thing. I saw you were having some trouble with it.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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