Author Topic: How Often Has a Doctor Said This to You????  (Read 6799 times)

Waldop

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How Often Has a Doctor Said This to You????
« on: April 06, 2008, 02:45:42 PM »
I don't mean to sound negative, but I often wonder how many others have heard a doctor say to them, "Only the mouth and eyes are involved in Sjogren's??" While I realize that the core of Sjogren symptoms are the eyes and mouth, I've had spoken to numerous Sjogren patients who have had more than dry eyes and mouth to contend with.  The last two Rheumatologists that I've dealt with would always tell me that they only examine the eyes and mouth because that's all that's ever involved. Now I'm not trying to scare anyone, but the fact remains, there are other factors involved other than the obvious two. Basically, I can't get a Rheumatologist to take Sjogren's seriously and quite frankly, it truly bugs me.  I had mentioned in another thread that I wanted to contact Dr. Vivino because he once mentioned in an article,  how one thing that truly annoys him, is when doctors take Sjogren's for granted and DON'T look at the entire picture. Well, I know EXACTLY what he's referring to. I only wish I resided in Pennsyvlania so I could see such a wonderful physician as him. I'm sure there are others out there, but they seem to be few and far between. I often feel that if a patient isn't comfortable with his/her doctor, there can never be a good rapport with that particular doctor. One can only change doctors just so often. Especially when one doesn't have insurance, or is limited to who they can see.

Oh well, enough ranting and raving. I am grateful for what I've got in life.

Thanks for listening to me.

hugs
Barrie

irish

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Re: How Often Has a Doctor Said This to You????
« Reply #1 on: April 06, 2008, 03:12:35 PM »
Barrie, There are more of those docs out there than a person would think. I don't know what stone age they are living in but they have not kept up on things. Have you googled about Sjogrens and found a good site to copy and take with you to give to the doctor. Maybe even printing off some of the neurological articles on this site might shake up a few docs.

I bet a lot of them don't even know that Sjogrens can mimic MS or that it is a kissing cousin of lupus. Makes a person made bigtime!!! To think that we have to go to so many doctors to get someone to listen to us. I know I have had a bunch of docs who treated me bad and like a nut case. I wrote one of them a long letter and I think they probably got the point, but they will never admit it. Irish ;D

susanep

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Re: How Often Has a Doctor Said This to You????
« Reply #2 on: April 06, 2008, 04:39:30 PM »
I know what you mean. I had to see my regular gp Saturday so sick with this crud going around. I start going over all my symptoms, and telling her how bad it gets with my sjogrens. All she says is when was your last mammogram,pap test,ect. I don't care what her reasons were behind this, I am really ticked off. The only reason I got an antibiotic, is because I threatened to pull my snotty tissue with green snot out of the wastebasket for her to see.

I think I am way past worrying about hurting their feelings anymore. I am too darn sick for that.

susanep :)
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

Waldop

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Re: How Often Has a Doctor Said This to You????
« Reply #3 on: April 06, 2008, 05:07:30 PM »
Barrie, There are more of those docs out there than a person would think. I don't know what stone age they are living in but they have not kept up on things. Have you googled about Sjogrens and found a good site to copy and take with you to give to the doctor. Maybe even printing off some of the neurological articles on this site might shake up a few docs.

I bet a lot of them don't even know that Sjogrens can mimic MS or that it is a kissing cousin of lupus. Makes a person made bigtime!!! To think that we have to go to so many doctors to get someone to listen to us. I know I have had a bunch of docs who treated me bad and like a nut case. I wrote one of them a long letter and I think they probably got the point, but they will never admit it. Irish ;D

Irish,

The Rheumatologist I see now, is more stubborn than ignorant.  I could share with him all the updated info on Sjogren's, but he sees it the way he sees it and NO ONE is going to tell him otherwise. Believe you me, if I had a choice, I would definitely go to another doctor. Unfortunately, this is basically the only Rheumatologist in town, and on my so called insurance coverage. I keep telling my primary care physician's office to let me know if any new one's get on the list.

You're 150% right about Sjogren's mimicking MS, or being a kissing cousin to Lupus. It's almost as if Sjogren's doesn't exist in their eyes!!  >:( >:(

I applaud you for writing a letter. That's the best way to convey one's feelings.  I sometimes wish, we as patients, would have more options when it comes to picking and choosing doctors, but we don't.

Anyhow, thanks for your input.

hugs
Barrie


Waldop

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Re: How Often Has a Doctor Said This to You????
« Reply #4 on: April 06, 2008, 05:10:37 PM »
I know what you mean. I had to see my regular gp Saturday so sick with this crud going around. I start going over all my symptoms, and telling her how bad it gets with my sjogrens. All she says is when was your last mammogram,pap test,ect. I don't care what her reasons were behind this, I am really ticked off. The only reason I got an antibiotic, is because I threatened to pull my snotty tissue with green snot out of the wastebasket for her to see.

I think I am way past worrying about hurting their feelings anymore. I am too darn sick for that.

susanep :)

Susan,

It sounds as if your doctor is a robot. Asking the usual questions without even wanting to hear what you have to say. This is EXACTLY what I'm referring to!! It's almost as if we talk to ourselves. I still believe that everyone is entitled to a decent doctor who respects the people he/she treats. I'm not saying that we as patients should take a doctor for granted, but it goes both ways, and it almost never does!!

I loved what you said about threatening to pull your tissue out with the evidence!! I would've loved to have been a fly on that wal!!  :o :o :o

I guess all we have is ourselves. At least we can listen to one another!!

hugs
Barrie

Pooh

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Re: How Often Has a Doctor Said This to You????
« Reply #5 on: April 06, 2008, 05:18:47 PM »
Wouldn't it be wonderful if we could inject these uncaring doctor's with a Sjogren's Syndrome serum.  One that last's for a month or two, just so they can experience what we go through every day.  Especially those times when it flares. 

I often wonder if these doctor's are really in the medical field to help people or simply because Mom and Dad wanted a doctor in the family.  I have finally realized that my own GP doesn't know as much as he wants me to think.  I'm in the process of changing GP's. 

Hang in there Barrie, maybe by some act of God he'll get one of these AI's. 

Hugs, Pooh

wordnerd

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Re: How Often Has a Doctor Said This to You????
« Reply #6 on: April 07, 2008, 11:35:42 AM »
This is a very very sore subject for me!  I know I've mentioned this before, but I former GP was basically treating me as if I had a Somatization disorder despite the fact that I was already diagnosed with AI Pancreatitis, Hashimoto's, and all my other docs were convinced I had some underlying AI disease but just weren't sure which at that point.  So when my pancreatitis flared up to the point I couldn't keep food down for 2 weeks and hadn't keep fluids down in 48 hours I ended up being admitted through the ER.  My mom called her so she would be in the loop and she basically yelled at my mom for taking me to the hospital in the first place and said that I need to learn how to deal with my "health issues" at home.  I ended up in the hospital for 6 weeks with not only AI Pancreatitis but AI Hepatitis and a bunch of other complications and thats when I finally got my Sjogren's diagnosis.

I also fired my doctor at the time.  Obviously.

This happened in September, but I'm still so so angry about it.  I want to sue her or write her a letter or file a complaint about her but I just don't have the energy right now.  I don't know if there would be any point of suing her because I didn't listen to her advice and stay home from the hospital, so I couldn't really claim damages.  I really just want an apology and for her to admit that she was totally wrong.

Anyway... I say I wouldn't wish this disease on anyone but... I think I might actually have to agree with Pooh.  Let the punishment fit the crime.  >:(

Scottietottie

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Re: How Often Has a Doctor Said This to You????
« Reply #7 on: April 07, 2008, 12:38:51 PM »
Hi Barrie  :)

How often? TOO often - and from various doctors. It makes me mad too. Rhematologists really should know better though. I don't expect a GP to know everything but I do think that when they come across something they don't know - they can use the internet like everyone else and probably have unrestricted access to some good sites too.

I've told several 'ologists' now that's it's a darn site more than dry eyes and mouth. I think in my own case the dryness came late but the underlying disease was already active.

Take care - Scottie  :)
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Waldop

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Re: How Often Has a Doctor Said This to You????
« Reply #8 on: April 07, 2008, 01:37:04 PM »
Wouldn't it be wonderful if we could inject these uncaring doctor's with a Sjogren's Syndrome serum.  One that last's for a month or two, just so they can experience what we go through every day.  Especially those times when it flares. 

I often wonder if these doctor's are really in the medical field to help people or simply because Mom and Dad wanted a doctor in the family.  I have finally realized that my own GP doesn't know as much as he wants me to think.  I'm in the process of changing GP's. 

Hang in there Barrie, maybe by some act of God he'll get one of these AI's. 

Hugs, Pooh

Pooh,

I think you could be on to something. You can't help but wonder why some of these doctors became doctors in the first place!!

Wouldn't life be grand if we could inject those very doctors. You know, I somehow think they still wouldn't get it. You can't help but scratch your head.

Sorry to hear about your GP. I hear all too many stories like this and it really ticks me off. I know I should channel my emotions more positively, but every once in awhile we need to vent.

You take care..

hugs
Barrie

Waldop

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Re: How Often Has a Doctor Said This to You????
« Reply #9 on: April 07, 2008, 01:41:58 PM »
This is a very very sore subject for me!  I know I've mentioned this before, but I former GP was basically treating me as if I had a Somatization disorder despite the fact that I was already diagnosed with AI Pancreatitis, Hashimoto's, and all my other docs were convinced I had some underlying AI disease but just weren't sure which at that point.  So when my pancreatitis flared up to the point I couldn't keep food down for 2 weeks and hadn't keep fluids down in 48 hours I ended up being admitted through the ER.  My mom called her so she would be in the loop and she basically yelled at my mom for taking me to the hospital in the first place and said that I need to learn how to deal with my "health issues" at home.  I ended up in the hospital for 6 weeks with not only AI Pancreatitis but AI Hepatitis and a bunch of other complications and thats when I finally got my Sjogren's diagnosis.

I also fired my doctor at the time.  Obviously.

This happened in September, but I'm still so so angry about it.  I want to sue her or write her a letter or file a complaint about her but I just don't have the energy right now.  I don't know if there would be any point of suing her because I didn't listen to her advice and stay home from the hospital, so I couldn't really claim damages.  I really just want an apology and for her to admit that she was totally wrong.

Anyway... I say I wouldn't wish this disease on anyone but... I think I might actually have to agree with Pooh.  Let the punishment fit the crime.  >:(

I feel so badly for you. But as I stated in my prior email, I'm not a bit surprised. I hear these stories way too often and it's getting ridiculous. I can surely comprehend your anger. When a so called doctor dismisses your illness you have every right to be ticked off and want some satisfaction.  This doctor has no right being near people. She obviously doesn't know how to deal with the real world.

We can only hope and pray things change for the better, but then I hear a story such as yours and it really makes my blood boil!!  >:( >:(

You take care and feel better.

hugs
Barrie

Waldop

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Re: How Often Has a Doctor Said This to You????
« Reply #10 on: April 07, 2008, 01:45:33 PM »
Hi Barrie  :)

How often? TOO often - and from various doctors. It makes me mad too. Rhematologists really should know better though. I don't expect a GP to know everything but I do think that when they come across something they don't know - they can use the internet like everyone else and probably have unrestricted access to some good sites too.

I've told several 'ologists' now that's it's a darn site more than dry eyes and mouth. I think in my own case the dryness came late but the underlying disease was already active.

Take care - Scottie  :)

Scottie,

I managed to give some doctors information about Sjogren's, but they just look at me as if to say, "Why should I bother with this!!" It's almost as if some of these so called doctors have their pet projects and they only want to focus on that. This particularly the case with specialists. God forbid they actually learn something new and expand their knowledge, that would be a terrible thing!!  I would never wish this illness on anyone, but as Pooh so eloquently stated, let them deal with Sjogren's for one week and see what happens!! Mark my words they'd get a better perception of what we deal with, day in and day out!!  >:( >:( >:(

You take care and hang in there.

hugs
Barrie

YICKelly

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Re: How Often Has a Doctor Said This to You????
« Reply #11 on: April 07, 2008, 04:06:31 PM »
i am so sorry that everyone has to go through all of that.  Can I tell you that there are good, caring doctors out there.  I know I have had a few.  Please don't throw anything at me.  My GP always does something if i complain about something I feel isn't right.  The first GP I had when I moved to Ohio was about the nicest guy I have ever met(he has died).  He sent me to great surgeons when he finally listened to my complaint about feeling so old - OK it did take a few times to get him to listen - no one expects a not guite 40 yr. old to complain about feeling like she is 90.  But I went to the same surgeon his wife went to.  I have often thanked God for leading me to such great doctors. Especially now that I am on Medicare/Medicaid, it is much more difficult to find good ones that accept those.  Hang in there.  I am praying you all with find at least one doctor that will do what is right by you!

Tamik

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Re: How Often Has a Doctor Said This to You????
« Reply #12 on: April 07, 2008, 07:55:57 PM »
You really hit a nerve with this post! I have seen many GP's and 2 neurologists who  -if they have even heard of Sjogren's - have said it only affects the eyes and mouth! My Rhumetologist is knowledgable or willing to look things up I tell her. She just only wants to see me for my autoimmune issues - how the heck do I tell the difference??? :)    I finally found a GP who at least has heard of it and is willing to work with me.  Tami K

Waldop

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Re: How Often Has a Doctor Said This to You????
« Reply #13 on: April 08, 2008, 06:11:16 AM »
i am so sorry that everyone has to go through all of that.  Can I tell you that there are good, caring doctors out there.  I know I have had a few.  Please don't throw anything at me.  My GP always does something if i complain about something I feel isn't right.  The first GP I had when I moved to Ohio was about the nicest guy I have ever met(he has died).  He sent me to great surgeons when he finally listened to my complaint about feeling so old - OK it did take a few times to get him to listen - no one expects a not guite 40 yr. old to complain about feeling like she is 90.  But I went to the same surgeon his wife went to.  I have often thanked God for leading me to such great doctors. Especially now that I am on Medicare/Medicaid, it is much more difficult to find good ones that accept those.  Hang in there.  I am praying you all with find at least one doctor that will do what is right by you!

You're right, there are some that are caring and empathetic to people's needs. I'm glad whenever I do hear of positive stories. I'm just saying that a lot of people have had problems when it comes to autoimmune diseases, because they don't know much about it. Instead of being honest and up front, they'd rather be aloof and make their patients think their nuts.

Anyhow, I'm glad to hear that you do have good doctors. Maybe one day we won't have to talk about this and it'll be something of the past. Although, I wouldn't hold my breath. Cynical as that sounds, it's also quite realistic.

hugs
Barrie

Waldop

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Re: How Often Has a Doctor Said This to You????
« Reply #14 on: April 08, 2008, 06:15:57 AM »
You really hit a nerve with this post! I have seen many GP's and 2 neurologists who  -if they have even heard of Sjogren's - have said it only affects the eyes and mouth! My Rhumetologist is knowledgable or willing to look things up I tell her. She just only wants to see me for my autoimmune issues - how the heck do I tell the difference??? :)    I finally found a GP who at least has heard of it and is willing to work with me.  Tami K

Tami,

The whole key is finding someone who really knows Sjogren's and is willing to work with you. That's all anyone can expect.  I will admit that the new primary I see is a miserable human being, but when I told him I had Sjogren's, he immediately pounced up and took attention. I also mentioned that I had the anticardiolipin antibodies and you know what he said???... He then said, "You've got a BIG autoimmune problem!!"  You think doctor!!  All I ever hope is that all patients get treated equally and if a doctor doesn't know something, they'll at least own up and admit it. And, be willing to learn.

hugs
Barrie