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wrightrs
05-13-2009, 08:09 AM
I was wondering what kind of problems are rheumy's suppose to handle. Because when I go to mine. He acts like all my problems are beneath him. I feel like I'm telling him things he should handle. Things that are lupus related.
He always tells me to tell my PCP. I go to my PCP he tells me to tell my rheumy. I just want to know what they should handle.

rob
05-13-2009, 08:57 AM
Hey there Becky,

Honestly, I don't really know what they are supposed to actually be doing. I have seen many rheumo's in the past five years, and I found there was absolutely no consistency between any of them. When it comes to Lupus, I really don't think they know what the hell they are supposed to be doing. One thing they are good at though, is passing the buck. I wish I had a better answer for you.

Rob

wrightrs
05-13-2009, 09:18 AM
Thanks Rob and they do pass the buck. That's all mine does. I think I'm going to find another one. Because I'm not getting anywhere with this one. I'm tried of feeling so bad, and going to him, thinking he's going to do something and he does nothing.

gina
05-13-2009, 09:42 AM
I am not sure either i don't see one my internists takes care of all my symptoms. if she needs to talk to one there is one in the practice so i don't have to pay to see him she just ask him questions and he helps her out with the meds. for me and that is all. sorry i couldn't help you

wrightrs
05-13-2009, 12:25 PM
Maybe I don't need a rheamy. Maybe I need a lupus speclist how do you find one of them ?

Oluwa
05-13-2009, 12:32 PM
My rhuemBA supposedly does grant studies on Lupus...and he still gives me the blank dot Little Orphan Annies eyes...

Here is a guide line for doctors who treat our symptoms, Becky....

Treatments for autoimmune diseases vary. So do the types of doctors who provide them.

For some people, one doctor will be enough to manage their disease. Others may require a team approach with several specialists treating various aspects of an autoimmune disease. One doctor might coordinate and give care, and others would treat specific organ problems. For example, a person with lupus might be seen by a rheumatologist. But that person might also see a nephrologist for related kidney problems and a dermatologist for skin problems.
Specialists you may need to see include:



A rheumatologist, who treats arthritis and other rheumatic diseases. These include scleroderma and systemic lupus erythematosus (lupus or SLE).
An endocrinologist, who treats gland and hormone problems. These include diabetes and thyroid disease.
A neurologist, who treats nerve problems. These include multiple sclerosis and myasthenia gravis.
A hematologist, who treats diseases that affect the blood. These include pernicious anemia and autoimmune hemolytic anemia.
A gastroenterologist, who treats problems with the digestive system. These include Crohn's disease and ulcerative colitis.
A dermatologist, who treats problems of the skin, hair, and nails. These include psoriasis, pemphigus/pemphigoid, and alopecia areata.
A nephrologist, who treats kidney problems. These include glomerulonephritis, inflamed kidneys associated with lupus.

Love,
Oluwa

lucky7
05-13-2009, 12:32 PM
Boy are you and Rob right Becky!!! Pass the buck and act confused! They are ALL good at that! I experience the EXACT same thing from my Rheumy:skeptical: Thats why im getting a referal from my GP to a GOOD RHEUMY at the University of Michigan! Between that and the Cleveland Clinic, im Hopeing to move things along a littl faster! UGH! :wacko:

wrightrs
05-13-2009, 01:51 PM
Boy are you and Rob right Becky!!! Pass the buck and act confused! They are ALL good at that! I experience the EXACT same thing from my Rheumy Thats why im getting a referal from my GP to a GOOD RHEUMY at the University of Michigan! Between that and the Cleveland Clinic, im Hopeing to move things along a littl faster! UGH!



Good luck in Michigan !!!! Maybe I should try Duke it's about 4 hrs. away. If I go that far and they still pass the buck. I might get angry enough to pitch a little fit.:hissyfit: I'm tired of trying to be nice to them.
:beat-dead-horse::rolling-crazy::1:

wrightrs
05-13-2009, 02:01 PM
My rhuemBA supposedly does grant studies on Lupus...and he still gives me the blank dot Little Orphan Annies eyes...

Here is a guide line for doctors who treat our symptoms, Becky....

Treatments for autoimmune diseases vary. So do the types of doctors who provide them.

For some people, one doctor will be enough to manage their disease. Others may require a team approach with several specialists treating various aspects of an autoimmune disease. One doctor might coordinate and give care, and others would treat specific organ problems. For example, a person with lupus might be seen by a rheumatologist. But that person might also see a nephrologist for related kidney problems and a dermatologist for skin problems.
Specialists you may need to see include:



A rheumatologist, who treats arthritis and other rheumatic diseases. These include scleroderma and systemic lupus erythematosus (lupus or SLE).
An endocrinologist, who treats gland and hormone problems. These include diabetes and thyroid disease.
A neurologist, who treats nerve problems. These include multiple sclerosis and myasthenia gravis.
A hematologist, who treats diseases that affect the blood. These include pernicious anemia and autoimmune hemolytic anemia.
A gastroenterologist, who treats problems with the digestive system. These include Crohn's disease and ulcerative colitis.
A dermatologist, who treats problems of the skin, hair, and nails. These include psoriasis, pemphigus/pemphigoid, and alopecia areata.
A nephrologist, who treats kidney problems. These include glomerulonephritis, inflamed kidneys associated with lupus.

Love,
Oluwa



Thanks for your help you are always so helpful and you have so much knowledge. I'm going to have to figure something out this has gone on to long !! That how I found this site. I was looking for answers then.

lucky7
05-13-2009, 02:03 PM
Ive discovered Becky that being nice just doesnt get you anywhere unfortunately:no: Im SO MUCH FIRMER now than ive ever been. Being NICE and not speaking up (and trusting my dr)got me 3yrs of my old GP telling me "its in my head" and "youre stressed, get some rest". Even though my blood tests were saying otherwise at that point! B****! LOL Carl and i told her how we felt and now shes shaking in her shoes cuz we told her what our lawyers saying about it ALL! LOL Tell me ints in my head now B****!! :laugh:

wrightrs
05-13-2009, 02:25 PM
Ive discovered Becky that being nice just doesnt get you anywhere unfortunately:no: Im SO MUCH FIRMER now than ive ever been. Being NICE and not speaking up (and trusting my dr)got me 3yrs of my old GP telling me "its in my head" and "youre stressed, get some rest". Even though my blood tests were saying otherwise at that point! B****! LOL Carl and i told her how we felt and now shes shaking in her shoes cuz we told her what our lawyers saying about it ALL! LOL Tell me ints in my head now B****!! :laugh:


Do you still go to the same doctor. They act like they think its in my head too!!! It makes me feel embarrassed to say anything. I wish my husband could go with me. But my husband would be nicer to them, than I am.:hissyfit:

sick n tired
05-13-2009, 02:34 PM
I totally agree with Rob...it is very confusing when I need the Rheumy to do something and he says for me to go elsewhere...last January, I got sick and ended up with Pneumonia and water around my heart(can't remember what that is called:cute:) My rheumy was upset that my pcp never called him back because he had to handle it...Rob said it very well...they are great at passing the buck...

Pearl
05-13-2009, 02:39 PM
This is what I used to hear when I was in sales, many years ago. Frankly, I used to think it was a bunch of BS (pardon my abbreviated language...) It stuck with me though, and I share this with you to adopt as you go on the hunt for a doctor who will listen and care. You may have to go through many Dr. NO's (one who does not listen, care, help, etc.) before you get to a Dr. YES. I heard just the other day that the average lupus patient seeks the care of at least three rheumys before diagnosis. That was my personal experience also.

You have the right to hire and fire at will any physician that does not work as your partner to help you be as healthy as possible. Doctors are not God, Master of the Universe, or Psychic. Therefore, they cannot banish you to the depths of discomfort simply because they have no answers except "It must be in your head." You know what is in your head and you know what is going on in your body. I would bet my right arm there are very few people who want to be sick the way lupus makes you sick. Are you kidding me? I would not hesitate to say exactly that to the next doctor who suggests this is all in your head.

As for your search for the right doctor, seek the assistance of the Lupus Foundation of America, or a chapter in your area. Google lupus research centers, etc. and try to find a researcher in your area that accepts patients.

You are not crazy, nor are you a hypochondriac. You are tired, frustrated and you do not feel well. Let your frustration be your motivation. Never give up. As I have said many times before, it's your life, your health and your money. You are worth it.

Keep your chin up. My thoughts are with you.

wrightrs
05-13-2009, 02:56 PM
I totally agree with Rob...it is very confusing when I need the Rheumy to do something and he says for me to go elsewhere...last January, I got sick and ended up with Pneumonia and water around my heart(can't remember what that is called:cute:) My rheumy was upset that my pcp never called him back because he had to handle it...Rob said it very well...they are great at passing the buck...



I can't walk very well at all. I asked my rheumy if he could send me to a place to get a power chair. I told him I was tried of sitting home all the time. He told me to ask your PCP. So I went to my PCP. They fill out paper work. And sent it to the ins. The ins said they needed info from my rheumy. That was a year ago, still don't have one. We go on vacation soon. So I've been calling about it. He acts like is beneath him to deal with something like that.

lucky7
05-13-2009, 02:57 PM
HEck NO Becky, im with a new one but shes not turning out to be so great either:skeptical: My first visit she says "lupus and R Arthritis". Carl and i wlaked awya soooo happy! Next visit after some MORE bloodwork "im not sure what to do next or say, your not sick,it probably is just fibromyalgia". UGH! Carl and i laughed! LITERALLY! WE are so used to this same old same old. Its routine anymore. Depending on what my blood says at that particular moment is how the dr acts towards us. ITS SICKENING. MInd you, the first visit they have my bloodwork from the lab and thats all, no records from my old GP. Next visit they received my records, omg, its night and day. MY old GP put on the very top page that im a hypo and i probably have a mental disorder. Carl and i laugh about it now. WE KNOW what the deal is, thye cant hurt us anymore with their Godlike atttitudes. WE have a path to get me listened to by a dr who cares its just taking time. WE WILL PREVAIL!!!!!!!!!!!!!!!!!LOL:banana:

Angel Oliver
05-13-2009, 03:47 PM
Becky..you hang there.I just messaged you.xxx

sick n tired
05-13-2009, 04:01 PM
I hear you on that one....I have severe dry eyes so Rheumy sent me to eye specialist to ask for Restasis and I ask him he told me I needed to get it from Rheumy....so frustrated...

So Wrightrs....What I did last year is I rented one of those chairs....maybe that is something you need to do...

Pearl
05-13-2009, 04:43 PM
Have you tried calling the power chair company directly and asking for assistance? If that doesn't work, you could try sending a certified letter, return receipt requested, to your doctor and to your rheumy requesting that they provide one another and provide the insurance company with the necessary information to process your request for a power chair and ask that they provide this information within 10 days receipt of your letter. (You will get the return receipt back from the post office letting you know who signed for the letter at the doctors' offices and when they received it.) Advise them to provide you with a copy of the information provided to one another and to the insurance company, along with confirmation that the documents have been sent as requested. They may ask to you sign an authorization for the release of this information. Your letter should get their attention and let them know you are serious. I am not offering legal advice here. This is just one way to communicate and to document your efforts.

My mother died because doctors could not figure out what was wrong with her...they told us it was in her head and even sent her for a psychiatric evaluation. It was outrageous. As it turns out, she died catastrophically and suffered needlessly because we trusted that the doctors were doing their best, especially when medical test after medical test came back with normal results. After her death, I vowed never to let doctors dissuade what my heart and mind told me was the truth - about my own health, or the health of someone I love. Insist on proper care. Your life depends on it. You are worth it.

Just a suggestion. I hope you get this worked out. I am sorry you are feeling unwell.

Jana

rob
05-13-2009, 04:50 PM
HEck NO Becky, im with a new one but shes not turning out to be so great either:skeptical: My first visit she says "lupus and R Arthritis". Carl and i wlaked awya soooo happy! Next visit after some MORE bloodwork "im not sure what to do next or say, your not sick,it probably is just fibromyalgia". UGH! Carl and i laughed! LITERALLY! WE are so used to this same old same old. Its routine anymore. WE WILL PREVAIL!!!!!!!!!!!!!!!!!LOL:banana:
Hey there Jeanette,

There are three words I absolutely despise hearing when they are uttered by a person who is supposed to be a professional in their field-"It's probably just...".

It's probably just this, or it's probably just that, it's probably just fibromyalgia. I've heard that from various Dr's and specialists far too often. I used to produce firearms for various law enforcement agencies. To be specific, I built sniper rifles for the better part of 16 years. One day, I had the head of the Hostage Recue Team from a major federal agency call me with some questions regarding the performance of some rifles I had recently built for them. These are firearms that absolutely must work properly 100% of the time, and there are no exceptions, nor are there any excuses for anything less than complete reliability. Did I just say to my client "oh it's probably just this, or probably just that". Of course not. If one of my weapons malfunctioned in a real world situation, it could get someone killed. I cleared my schedule for the day, and we tracked down, and solved the problem. It was indeed a minor mechanical glitch that could have led to a weapon not firing at the critical moment when it needed to.

I considered this kind of work to be life and death type of stuff. How is it, that these various doctors and specialists don't see their own work in the same way? I mean, Lupus is an incurable, and sometimes fatal disease. How is this not life and death type of work? How do they just blow people off and go home and sleep well at night? Sure, firearms design and medicine are two completely different things, but the outcome of negligence in performing either job can ultimately lead to the same unfortunate outcome. I guess I apply my own standards to other peoples work, and get angry when I see them not performing to a proper standard. I don't get it. Anyway, I'm having one of my bad Dr/Rheumo rant days today. Thanks for letting me get up on the soapbox for a bit.

Rob

lucky7
05-13-2009, 04:55 PM
WOW Jana, VERY POWERFUL WORDS MY FRIEND. SO SORRY for the way your mother was treated. Thats not right and im sorry for the pain you must have felt. Sorry you lost her but also sorry you lost her in that way:no: You are in my HEART and THOUGHTS my friend:hug:

Unfortunately my mother-in-law lost her mother to lupus in just that same way. Her drs told her the same things your mothers doctors told her. Shes VERY worried about me considering she sees the exact same symptoms in me. Shes in Florida and she feels so helpless,im very close to her, i call her my mom and ive been in the family for 19 yrs now so we are VERY CLOSE. Im estranged from my mother unfortunatrely, she has a drug and alcohol problem that i tried to help her with for as long as i can remember but she choses not to help herself.

Im glad you are here to share your heartbreaking story with us. Once again, im sorry for your pain.XXXXXXXXXXXXXX

Rastagirl
05-13-2009, 05:02 PM
Wow, we have some eloquent speakers here, Rob and Jana. You guys can climb on your soapboxes anytime for our benefit :soapbox:

Hope you're taking notes Becky. This is some good stuff to encourage you to keep on fighting for what you truly deserve.

Sure hope you get things resolved in your favor soon.

Hugs,

:cool2: Lori

Pearl
05-13-2009, 05:05 PM
Thanks for thinking of me. I only hope my mother's experience will inspire others and help them to find the strength to live and to fight another day. I am sorry about your mom and am happy for you that you are close to another "mom." Tell her not to worry about you. You are a fighter. Everyone here is. And today, we are going to join together and help Becky find the strength to lasso up a power chair so she can go on vacation!

lucky7
05-13-2009, 05:13 PM
Rob, YOU DESERVE that soapbox my friend! :soapbox1: THANK YOU for your GREAT analogy. YOu always say the right things at the right times, i appreciate that.:cute:

lucky7
05-13-2009, 05:14 PM
LOL WE will get that powerchair yet Becky!!!!!! ;)

wrightrs
05-13-2009, 10:30 PM
This is what I used to hear when I was in sales, many years ago. Frankly, I used to think it was a bunch of BS (pardon my abbreviated language...) It stuck with me though, and I share this with you to adopt as you go on the hunt for a doctor who will listen and care. You may have to go through many Dr. NO's (one who does not listen, care, help, etc.) before you get to a Dr. YES. I heard just the other day that the average lupus patient seeks the care of at least three rheumys before diagnosis. That was my personal experience also.

You have the right to hire and fire at will any physician that does not work as your partner to help you be as healthy as possible. Doctors are not God, Master of the Universe, or Psychic. Therefore, they cannot banish you to the depths of discomfort simply because they have no answers except "It must be in your head." You know what is in your head and you know what is going on in your body. I would bet my right arm there are very few people who want to be sick the way lupus makes you sick. Are you kidding me? I would not hesitate to say exactly that to the next doctor who suggests this is all in your head.

As for your search for the right doctor, seek the assistance of the Lupus Foundation of America, or a chapter in your area. Google lupus research centers, etc. and try to find a researcher in your area that accepts patients.

You are not crazy, nor are you a hypochondriac. You are tired, frustrated and you do not feel well. Let your frustration be your motivation. Never give up. As I have said many times before, it's your life, your health and your money. You are worth it.

Keep your chin up. My thoughts are with you.


Thanks so much. This is so true !!!

wrightrs
05-13-2009, 10:45 PM
HEck NO Becky, im with a new one but shes not turning out to be so great either:skeptical: My first visit she says "lupus and R Arthritis". Carl and i wlaked awya soooo happy! Next visit after some MORE bloodwork "im not sure what to do next or say, your not sick,it probably is just fibromyalgia". UGH! Carl and i laughed! LITERALLY! WE are so used to this same old same old. Its routine anymore. Depending on what my blood says at that particular moment is how the dr acts towards us. ITS SICKENING. MInd you, the first visit they have my bloodwork from the lab and thats all, no records from my old GP. Next visit they received my records, omg, its night and day. MY old GP put on the very top page that im a hypo and i probably have a mental disorder. Carl and i laugh about it now. WE KNOW what the deal is, thye cant hurt us anymore with their Godlike atttitudes. WE have a path to get me listened to by a dr who cares its just taking time. WE WILL PREVAIL!!!!!!!!!!!!!!!!!LOL:banana:



I wonder if you looked at all his patients records how many he thought were hypo. (probably all of then).

wrightrs
05-14-2009, 08:47 AM
Have you tried calling the power chair company directly and asking for assistance? If that doesn't work, you could try sending a certified letter, return receipt requested, to your doctor and to your rheumy requesting that they provide one another and provide the insurance company with the necessary information to process your request for a power chair and ask that they provide this information within 10 days receipt of your letter. (You will get the return receipt back from the post office letting you know who signed for the letter at the doctors' offices and when they received it.) Advise them to provide you with a copy of the information provided to one another and to the insurance company, along with confirmation that the documents have been sent as requested. They may ask to you sign an authorization for the release of this information. Your letter should get their attention and let them know you are serious. I am not offering legal advice here. This is just one way to communicate and to document your efforts.

My mother died because doctors could not figure out what was wrong with her...they told us it was in her head and even sent her for a psychiatric evaluation. It was outrageous. As it turns out, she died catastrophically and suffered needlessly because we trusted that the doctors were doing their best, especially when medical test after medical test came back with normal results. After her death, I vowed never to let doctors dissuade what my heart and mind told me was the truth - about my own health, or the health of someone I love. Insist on proper care. Your life depends on it. You are worth it.

Just a suggestion. I hope you get this worked out. I am sorry you are feeling unwell.

Jana


So sorry about your mother. We do give doctors to much power.

Thanks for the great ideas on commutacating with doctors. I never thoght of sending them a certafied letter.

I'm also looking up about where to get power chairs. So I can go talk to them.

Thanks so much for you help.

wrightrs
05-14-2009, 08:49 AM
Becky..you hang there.I just messaged you.xxx

Thanks Angel, I wrote you back. Your so sweet.

wrightrs
05-14-2009, 09:29 AM
Hey there Jeanette,

There are three words I absolutely despise hearing when they are uttered by a person who is supposed to be a professional in their field-"It's probably just...".

It's probably just this, or it's probably just that, it's probably just fibromyalgia. I've heard that from various Dr's and specialists far too often. I used to produce firearms for various law enforcement agencies. To be specific, I built sniper rifles for the better part of 16 years. One day, I had the head of the Hostage Recue Team from a major federal agency call me with some questions regarding the performance of some rifles I had recently built for them. These are firearms that absolutely must work properly 100% of the time, and there are no exceptions, nor are there any excuses for anything less than complete reliability. Did I just say to my client "oh it's probably just this, or probably just that". Of course not. If one of my weapons malfunctioned in a real world situation, it could get someone killed. I cleared my schedule for the day, and we tracked down, and solved the problem. It was indeed a minor mechanical glitch that could have led to a weapon not firing at the critical moment when it needed to.

I considered this kind of work to be life and death type of stuff. How is it, that these various doctors and specialists don't see their own work in the same way? I mean, Lupus is an incurable, and sometimes fatal disease. How is this not life and death type of work? How do they just blow people off and go home and sleep well at night? Sure, firearms design and medicine are two completely different things, but the outcome of negligence in performing either job can ultimately lead to the same unfortunate outcome. I guess I apply my own standards to other peoples work, and get angry when I see them not performing to a proper standard. I don't get it. Anyway, I'm having one of my bad Dr/Rheumo rant days today. Thanks for letting me get up on the soapbox for a bit.

Rob


I think your right Rob. My doctors say probably all the time. I have some very serious medical problems. Some doctors say they probably come from lupus. Some say they probably don't. I really don't care what they come from. I just want something done about them.

They know I have these problems. I get so frustrated when I go to them and they still act like its in my head.

wrightrs
05-14-2009, 09:37 AM
WOW Jana, VERY POWERFUL WORDS MY FRIEND. SO SORRY for the way your mother was treated. Thats not right and im sorry for the pain you must have felt. Sorry you lost her but also sorry you lost her in that way:no: You are in my HEART and THOUGHTS my friend:hug:

Unfortunately my mother-in-law lost her mother to lupus in just that same way. Her drs told her the same things your mothers doctors told her. Shes VERY worried about me considering she sees the exact same symptoms in me. Shes in Florida and she feels so helpless,im very close to her, i call her my mom and ive been in the family for 19 yrs now so we are VERY CLOSE. Im estranged from my mother unfortunatrely, she has a drug and alcohol problem that i tried to help her with for as long as i can remember but she choses not to help herself.

Im glad you are here to share your heartbreaking story with us. Once again, im sorry for your pain.XXXXXXXXXXXXXX


I'm glad you and your Mother-in-law are close since your not close with your Mom. Sorry about your Mom. Do you ever see her?

wrightrs
05-14-2009, 09:44 AM
Thanks for thinking of me. I only hope my mother's experience will inspire others and help them to find the strength to live and to fight another day. I am sorry about your mom and am happy for you that you are close to another "mom." Tell her not to worry about you. You are a fighter. Everyone here is. And today, we are going to join together and help Becky find the strength to lasso up a power chair so she can go on vacation!


Thanks, I'm working on the chair. I think I going to see about renting one for vacation. Maybe that will get the ball rolling.

lucky7
05-14-2009, 02:47 PM
No i dont see my mom anymore Becky. It saddens me at times but it is waht it is, i dont have the power to CHANGE her or to MAKE HER SEE she has addictions etc.... Im at peace most of the time with it, she hurt me BAD so much of my life, i have my days when i cry but not many because i dont dwell on whats not within my power to change. It does me no good. Thank you for asking Becky. XXXXXXXXXXXXXX

mountaindreamer
05-14-2009, 03:18 PM
WOW guys,

i have been on here last night and again this morning, and i just now found this thread. So sorry Becky, but i see everyone is taking good care of you. So many stories, so many heartbreaks, but so much strength in our little group...we are truly fortunate to have each other.

Becky, if you show the scooter chair store where you are in the insurance approval process, do you think they might loan you a chair? I don't know how, but there must be a way past this.

Can you take the form that you need signed to the drs. office yourself, and tell them you are there and need someone's approval....surely someone else can sign the form....doctors' representatives sign the prescription slips so why not an insurance form.

I can come to Charlotte and go with you, i have friends there that i need to visit anyway. We can join arms and stand together until we get some satisfaction....let me know, i can be there in 4 1/2 hours (i need 30 minutes to pack).

wrightrs
05-14-2009, 04:57 PM
WOW guys,

i have been on here last night and again this morning, and i just now found this thread. So sorry Becky, but i see everyone is taking good care of you. So many stories, so many heartbreaks, but so much strength in our little group...we are truly fortunate to have each other.

Becky, if you show the scooter chair store where you are in the insurance approval process, do you think they might loan you a chair? I don't know how, but there must be a way past this.

Can you take the form that you need signed to the drs. office yourself, and tell them you are there and need someone's approval....surely someone else can sign the form....doctors' representatives sign the prescription slips so why not an insurance form.

I can come to Charlotte and go with you, i have friends there that i need to visit anyway. We can join arms and stand together until we get some satisfaction....let me know, i can be there in 4 1/2 hours (i need 30 minutes to pack).

Someone told me the scooter people would contact my ins. and Drs. I might go tomorrow to a place thats on my ins. and talk to them.

Thanks your so sweet. I will let you know what I find out.

wrightrs
05-14-2009, 05:10 PM
I'm going back to rheamy tomorrow. Angel encougaged me to call back.

The person that called on the phone said the Dr. told her to tell me. "He didn't think this is lupus related. but he would see me anyway". I guess he thinks it's in my head !!!!:hissyfit::grumpy:

I think he's mad too !!!!:unsure::wideeyed:

abbasgirl
05-15-2009, 11:43 AM
I'm reading and nodding my head in agreement with many wise statements here and laughing at the little cracks made about rheumy's too.

I've had rheumy's say the same thing to me too. My pcp would send me to the rheumy, the rheumy would send me to the pcp. I'm not a very patient person. Two visits each with two different rheumy's and that was it for me. I gave them a second shot but the bedside manner and such was too much for me. If they don't show that they want to be helpful, they don't get any of my money or time...because chances are they're not going to be helpful.

My last rheumy, (the third time turned out to be a charm in this situation) which I'm keeping, isn't by far the greatest I think...but I like her attitude and she seems to really want her patients to feel better. However, she's a stickler to the rule books on things and won't stretch far. For example, it's highly suspected that I have Lupus, but since I don't meet all of the criteria, she can't do anything except tell me to continue the Plaquenil because it seems to be helping. HOWEVER, this doc is pretty smart and did her homework and found something else wrong she's not qualified to help me with...the enzyme deficiency I mentioned before. She sent me to a hematologist she knows and the hema found even more things. The hema says it's too soon to rule out Lupus...my first labs pointed to it too strongly and I have so many symptoms. Plus, with the enzyme deficiency I have there is evidence it can be linked with Lupus...or perhaps created the Lupus.

If a doctor doesn't have the right attitude, to me, they're just not qualified to help me. I know there are some doctors that are very bright and can solve the problem but their bedside manner is rotten. I can't work with people like that. lol. I don't have the patience for it. If House MD were treating me I think I'd die of fright. Brilliance alone just doesn't comfort me. lol.

I know it's frustrating. I have been through a lot of doctors over the years not just for myself but for my kids too. Experience told me this could stress me beyond the max...and after researching enough I could smell where this was going after my second rheumy. We live in a poor area...if you have an illness that's not a textbook problem, there's just not a lot to choose from. If there is a qualified rheumy in my area I'd love to know where he or she is. But I got tired of gambling with the money and frustration. What I did was look for reviews online and pray my heart out about it. I looked for anyone on my PPO list that is connected to Emory university hospital. I had read a lot of discussions online about finding university hospitals because they seem to be more up to date. I found that out to be true for my situation. I can't say much for my rheumy's or hema's medical staff but the doctors are great compared to what I have seen. It may not be true about every university hospital however... I have a friend in MI that didn't really get the help she needed at one. I have to drive two hours for this care but it's worth it.

Hang in there. There is a better doctor out there for you. It's just a matter of finding him or her. I'll be praying about it along with others. ((((hugs))))

emilbear
05-15-2009, 02:56 PM
becky,

you mentioned going to duke to see a rheumy when this thread started. i grew up in nc and was still living there when i went through the diagnosis process. i saw a rheumy at unc medical center/hospital named dr. mary anne dooley. i saw her only once because we were trying to get a third opinion on what was going on with me, particularly b/c i had nerve and circulation issues in my feet and legs (while in my early 20s). anyway, she was really nice and from what i understand she is one of the top docs in her field. my sister-in-law's mother was a regular patient of dr. dooley's too. she had some crazy, intense autoimmune things going on that the docs would think they figured out then something else would go wrong with her. BUT dooley hung in there with her.

i should say though that my mom is a registered nurse and went with me to all my appointments and my sister-in-law was in med school when her mom's health problems escalated. it's hard to tell how much difference that makes in terms of how docs treat you but i think they are not as quick to dismiss you if there is someone who knows something about medicine with the patient. that is just a comment about docs in general. like anything, if possible, it helps to have an informed advocate with you :yes:

i hope you find a good rheumy soon!

mountaindreamer
05-15-2009, 06:38 PM
Hi Abassgirl,

i noticed you mentioned seeing a rheumy at Emory. I live about 15 minutes from Emory, and want to offer my home for you to stay at anytime it would make your trip easier. I have plenty of room, and live alone with my little Roscoe who loves company. So, let me know if you need to stay here, i would truly love to have you. I live very close to Stone Mountain.

lucky7
05-18-2009, 04:41 PM
AWWWW Phyllis! YOu are SO SWEET!! I think we should still have that get-together! All of us meet up at your place! How fun would that be to finally SEE each other in person!!!!:cute: Im winning that lottery yet!!! Then im sending for everyone to meet in one place!!! Oh the things i would do if i was rich! I dont dwell on it but i DO DREAM sometimes!!!

scubagramplit
05-18-2009, 04:54 PM
I have to say on your question about the rheumies(spelling?), my first one was a nice guy however he did not think I had lupus, sent to for a 2nd & 3rd opinion, one said yes and the Oregon Health Sciences University said no. After I ended up in the hospital last year with pularisy and neumonia that came on suddenly he admited he was wrong. Then he left the country to go take care of his mother, I chose the only one that diagnosed me correctly. this rheumy interned at one of the leading lupus clinics on the west coast, he very forthright with me, listens and takes action. he sertainly seems very knowledgable with this disease. Best of luck to you finding a good. God bless.

lucky7
05-18-2009, 04:58 PM
Glad you found a good one Scubagramplit!!!:cute:

mountaindreamer
05-18-2009, 05:14 PM
hi subagramplit,

i am so glad you found a dr. that you can trust. It is so interesting (and at the same time, frightening) that it often takes us going through 2 or 3 drs. before we find a match.

leaf
05-18-2009, 06:05 PM
How do you guys in the states keep getting to say I am going to try a new this type of doctor and new this.....Where i am you have to have a doctor refer you and if he doesn't well then he doesn't and you are stuck....now no one wants to even talk to you if you already have a physician.....so you are stuck with the asses you get..........I am getting stupider, feel stupider and yes I am finally getting very depressed...things are worse, not working and/or falling apart.....people look at me like oh you look good and it can't be that bad...what the hell does what I look on the outside matter, for crying out loud I had to talk to myself to get myself in this damned oh you look good state. Well, I raise my white flag...ok its a kleenax...even my husband is frustrated to the point he does not know what to do. I'm tired more than not, I am in pain more than not, I am awake more than I am asleep, and yes I know I hear it, I can't take anything...ahhhhhhhhhhhhhhh...will someone please find another drug beside tylenol and aspirin things for pain for those allergic..for crying out loud we can send someone to the moon....why do people always have to get so angry when I say anything.....I cannot do this, God i can't and for once I am going to say this....I don't want to there!!!!!!!! My arthritis is so bad my fingers are barely usuable. I already had a physical problem with my legs from something else. What's left...take away my bike and tennis racket and i should be happy with a wheelchair...take away my ability to write...then im dead.
and i appologise for this note...........nothing makes sense...even nurses here can't get any damn good health care. Wow we are spending zillions of dollars on a new hospital with nothing but asses left to fill it...........fine....soon I will think of going to my dogs vet....im just tired of crying....
leaf

lucky7
05-18-2009, 06:19 PM
AWWWW, Leaf im so sorry you are feeling so bad.:no: I wish i could do something for you. All i can say about the drs is that the only one i can CHOOSE to keep changing is my GP , without a referral. All the other specialists i see were THROUGH a referral from whatever GP i am seeing at the time. Some of those specialists can refer me to another specialist IF its their area of expertise. An example of this would be my ENT refered me to my neurologist, he could only do this because they BOTH deal with the area of the body from the neck up. Crazy huh!:wacko: Its alot to keep up with but i just keep doing what i can to make it to the end of this long road! Cant you change GPs without a referral? I hope you can find a better way of getting the drs you want, you are in my heart and my thoughts:cute:

lucky7
05-18-2009, 06:25 PM
OOPS, i also wanted to say that just cuz we change drs here and there doesnt mean were getting much better health care:wacko: Ive run into so many GOOFBALLS i had no idea the medical world was so full of a***holes either! Ive discovered that with most drs you have to be lying there in front of them almost dead BEFORE they take you seriously! I get "oh, you are so young and healthy, just go home and rest, you LOOK fine" so much that im ready to slap someone.:shocked: My husband and i laugh now cuz we are so used to what each new dr is going to say before they say it! We have a routine anymore with each new a**hole, we look at each other, smile and walk out.

abbasgirl
05-20-2009, 10:50 PM
Phyllis, you are so very kind! I'd love that! I wish I saw this before we left for Emory Tuesday! We could have met somewhere and had lunch together or something. Next time I'm coming down there I'll give you a holler and we can do that?

abbasgirl
05-20-2009, 10:55 PM
Oh Leaf...how awful for you! I feel like a heel for complaining now. Thanks for reminding me to count my blessings.

I'm so sorry you have an ass for a doctor. I'm praying you get unstuck. (((Hugs))) How long have you had to endure this now?

wrightrs
05-21-2009, 10:52 AM
I have some news about the wheel chair. But we are leaving for a few days so will tell you when I get back. Unless I find the Internet while I'm gone. Getting ready for trips is so stressful. I'm going to try to rent a wheel chair to use on my trip also.

:6::6::6::6:

Pearl
05-21-2009, 01:24 PM
Becky -

WooHoo! I am soooo excited you found a chair. Now go and have a great vacation!

Leaf - I am so sorry you are having trouble with your physician. Finding a good one seems to be a common problem. We do have a little freedom of choice here regarding physician selection, although it is rapidly disappearing. Lucky7 gave you some great advice - maybe you can switch your primary doctor. Work on the referrals from there. In the meantime, hang in there. We all understand your frustration. If words could heal you, I'd give you a dictionary!

Wishing you pain-free days,

Jana

lucky7
05-21-2009, 06:32 PM
WOO HOO Becky!!! News about a wheelchair!!!! You ENJOY your time away!!!! :drive:

wrightrs
06-04-2009, 02:16 PM
Well I been through it with the chair. When I got to the beach I tired to rent one for vacation. Didn't happen. I looked up names of place on the Internet before I left. Some were closed for the holiday. The ones I talked to wouldn't rent for a week. You would think in a resort area like Myrtle beach you could find them for vacationers:hissyfit:

But anyway when I got back from the beach. I had a calls from the wheelchair place here on my messages. I was excited because I thought it was about my permanent chair. I call them to see. Well they told me my doctor had sent them a prescription for my manual wheel chair. I told them I was supposed to be getting a power chair. They told me I needed to call my doctor back. I was so frustrated. I went into a depression. On top of that I found out I have arthritis in my spine. So depressing. So I gave up on my chair most of the week.:hissyfit:

But yesterday I call my doctor back. You have to talk to his secretary for things like this. She gave me a hard time. But then she told me she would talk to my doctor and call me back.:nah:

She called back today and told me my doctor wrote the prescription for the power chair and told me it's hard to get approved for them. I told her that the chair place has already explained all that to me. I told her that I have an 1000 dollar deductible and ins. covers 70% after that. That we also pay very high premiums. I told her that if they cover the chair I've already paid for it.
She was very crabby.:wacko:

Also my husband wants me to get the chair. But he will complain about how much it will cost for years. That will make me more depressed. Especially with all the cut backs at his job.

But anyway I have the prescription now. Now I go though the approval process. I may not be here much for a few days. To get ready. They come to my house and measure. So I have to clean up. I haven't even unpacked from my trip. Let you know more later.

Angel Oliver
06-04-2009, 04:14 PM
Why is everything so difficult...so unfair for you...but so glad you are finally getting it.As for your husband......dont let him tell you anything for years...you are his wife....end of!!

love
Amanda.xxxxxx

dsunshine
06-04-2009, 05:39 PM
Fortunately I have a decent Rheumy! I think she has been great at getting me out of pain, calling me back with my lab results, adjusting my meds and answering my millions of questions. I have broken down on her so many times about Lupus, personal issues, etc. so she has also become my therapist in a way! BUT my Rheumy is in Beverly Hills so I am guessing the patients she have expect nothing less being in this area. I do hope your Rheumy adjust his/her attitude and shows some compassion and care to your issues and concerns...you expect doctors to have some type of answers or direct you to a specialist who can address you questions and concerns. Sorry you have to endure that crap!

Bonita
06-08-2009, 06:44 PM
I am so sorry to hear that all of you do not have a good rheumy. I really have a good one and he told me that i am a challenge. He always answers all my questions and i have talked to him so many times on my cell phone and when he does not have answers he sends me to one of the other doctors you have listed. My family doctor is the one who has the problem i ask him something and he says what does the rheumy say. Bonita

Monique89
06-08-2009, 07:02 PM
I actually really like my rheumatologist too. He answers all of my questions, and even gave me his email address incase i had any questions between appointments, as it is easier for him to respond quicker to email than to a phone call as he is with patients.
My hematologist however, i really dont like him. I am staying with him though because he is the best hematologist in melbourne so i have been told by many people. He really does know what he is talking about and is treating me well, but he just has no people skills and is so hard to get in contact with!!!
My GP is my favourite doctor though...he is just so willing to help me out, he even called me the day after i got admitted to hospital to see how i was going...He is just a lovely man...He even wrote letters to my work and to uni to get me special consideration, which he didnt have to do...Last week i sat in his office and cried for my whole 30 minutes appointment and he didnt care...

lucky7
06-09-2009, 11:07 AM
AWWW, im glad you got the prescription for the chair Becky! Sorry about tthe cost though! YUCK! :no: I say we all hyjack a chair for you then you wont have to pay!!! WOO HOO!!!! OK, i know its wrong to condone stealing but hey, the insurance companies are stealing from uss all of the time right!? Pay back baby!!!!! LOL I DO wish you the best in getting the chair though Becky:cute:

mountaindreamer
06-09-2009, 09:04 PM
hi becky,

so sorry about the chair for vacation, but i hope you found a way to enjoy your time at the beach. Myrtle beach is a beautiful place, hope you got to watch a sunrise over the east coast...so pretty.

i agree, it seems that in a resort area there would be chair rentals available for a week....i guess they are not worried about repeat customers.

why in the world would the drs. secretary want to be so crabby about your chair? like it really affects her, she is not the one trying to stay independent while fighting a debilitating disease....this is your life, and you know what you need.

i know the chair is extremely expensive, but if it keeps you mobile and able to do for yourself, then it will be worth every penny. I wish you did not have to put up with your hubby's complaining, it certainly won't help anything.

hope you are sleeping in peace tonight,

ashleybaby715
06-10-2009, 04:35 AM
uhm...from my understanding...and from what my rheumy does.... they focus in bone and joint issues and diseases like arthritis ....and they deal with diseases linked to these things...like lupus.

my doctor has been really helpful with everything, although i have to see different doctors for everything... like my lungs, eyes, kidneys and such.... my rheumy is the one that has recommended them.

i lovee my doctor ! :yes:

wrightrs
06-10-2009, 07:14 AM
Thanks everybody still working on the chair. I'm going to a physical Therapist to be evaluated now!!! They are also suppose to come and inspect my house to see if it will fit. Wonder what they will want me to do next !!! :hissyfit::hissyfit::hissyfit::hissyfit:

Pearl
06-11-2009, 08:08 AM
This chair thing will get worked out...have faith. I know the process is sooooo aggravating. I'm sending positive thoughts your way.

Jana

ginlyn
06-11-2009, 06:56 PM
Thanks Rob and they do pass the buck. That's all mine does. I think I'm going to find another one. Because I'm not getting anywhere with this one. I'm tried of feeling so bad, and going to him, thinking he's going to do something and he does nothing.
Becky
If you can find a new one sometimes specialists are the worstI have only foundone good one in the 6 I have tried and I am running out of choses of Rhuemys and the one good one retired because she had her own health problemsotherwise I would have notleft her practice.
Ginlyn

wrightrs
06-11-2009, 10:41 PM
Ginlyn,

Sorry you lost your good doctor. I lost some good ones too. My Endocrinologists left two years ago to home school her children. I've not found a new one yet. Good ones are few and far between.

wrightrs
06-11-2009, 10:44 PM
This chair thing will get worked out...have faith. I know the process is sooooo aggravating. I'm sending positive thoughts your way.

Jana

Thanks still working on it !!!

wrightrs
08-04-2009, 07:31 PM
Getting prepared for my next rheumy visit. Taking lots of notes. Hoping not to be brushed off again. I'm going to be ready this time. Hope he will be ready.

lucky7
08-07-2009, 01:53 PM
Dont LET him brush you off dear Becky.:no: ANd if hes JERK enough to do so, then MOVE on to the NEXT one because YOU DESERVE BETTER than THAT!!!! I know ITS DRAINING BUT, take care of yourself the way YOU DESERVE to be taken care of:cute: xxxxxxxxx