Author Topic: Vent  (Read 536 times)

Confused

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Vent
« on: July 26, 2019, 07:23:39 PM »
Ok the hospital I go to----make that went to has changed some of its rules on what it treats as far as sjogren's is concerned.  Of course you have to have a sjogren's dx.  I started off with a very nice,
 
(HA) Rheumy.  She had been the doc that dx'ed me with sjogren's and now all the things she had said ( I have the paper of what was written down by her for that appointment) don't seem to
 
mean a thing.  And neither does the fact I am picking up new things as I go along.  Despite the fact I had gone sero negative when the hospital she works at she still dx'ed me with sjogren's.  Of

course I have a myriad of problems besides the fact I went sero negative.  I lost my thyroid.  I can fall asleep talking to you.  I can barely move at times.  Oh, there is a list and I could go on but

alot of the problems I have I had before I was dx'ed with sjogren's.
 
Makes it a bit hard to say a med is causing something I was not taking a med for.  Makes it even harder when she does not have any current tests  that have been taken or maybe easier as I know she did not even take the time to find out what was going on.

The worst thing is that what she said today does not match up with what she said before and the tons of tests I had to have when she first dx'ed me.  I could not have Rheumy appointments as she went straight into allergy treatment.  Seems this was not true.  She was working as a Rheumy all the years I was told she was not.

Is this happening everywhere or is it me?
« Last Edit: July 26, 2019, 07:25:22 PM by Confused »

Joe S.

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Re: Vent
« Reply #1 on: July 27, 2019, 04:23:55 AM »
I have been led to believe that there is a shortage of Rheumy's. I believe that we have to advocate for ourselves. Where I have to go for treatment, the VA, I have not seen a Rheumy. I have a GP, rotating Cardiologists, dentists, and eye doctors. I have a medication specialist that I have seen more than any of the doctors listed above. She is interested in managing my Diabetes more than any thing else.

As some of you know, I take a lot of supplements. We just added an ionic balancing water filter. An I am waiting for help to clear space to set up the new Rife Plasma system. It surprised me to learn that this new system has a treatment for Sjogren's. The treatment for diabetes is a long sequence of about a couple of hours. It does drop my blood sugars. The Sjogren's treatment includes kill frequencies for nano-bacteria so it looks promising to me.   
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araminta

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Re: Vent
« Reply #2 on: July 27, 2019, 05:13:29 AM »
I'm sorry you're so upset, Confused.   It seems like a lot of the stress of having Sjogrens comes from our dealings with doctors and specialists.

Do you mean you will have to start all over again trying to get a diagnosis?    If so that sounds absurd.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

eye2dry

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Re: Vent
« Reply #3 on: July 27, 2019, 08:00:26 AM »
Hi Confused.

My sjogrens was dx with positive labs in 2010. I also was positive for RA with labs at same time.
My rhuemy does not believe in re running  positive labs.....he always said no point, a positive is a
positive.

Maybe also it is not a good idea  to do it b/c labs fluctuate and I guess if they do, at least in your case, they
take back their sjogrens dx.

Sorry it happened to you.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

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Confused

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Re: Vent
« Reply #4 on: July 27, 2019, 08:12:43 AM »
Araminta,
To meet whatever weird standards they are now supposedly following I would have to hit high SSA again on a blood test or worse yet have someone slice my lip.  I realize I was so darn upset last night that the vent probably is hard to follow.My GP gave me a blood test which hit high and said I had Sjogren's.  I made an appointment with a supposed really good Rheumy to find out what was going on.  He insisted on another round of panels for autoimmune and I had even higher on my SS-A.  He said I had sjogrens and wanted me on  plaquenil and something else that eludes me right now.  I had to have an eye test for the plaquenil.  Oh he did X-rays for arthritis

My second appointment-- I had not been able to get into the eye doc yet so the Rheumy was not happy and gave me the name of another eye doc to see.  He threw some scripts at me and then as my husband and I were going to ask him questions he suddenly discovered what job my hubby had and THAT was what he wanted to talk about.  We walked out and I tried a few more Rheumy's and figured this was a lost cause until I saw the doc at the hospital that dx'ed and does understand sjogrens.  However after running a ton of tests etc for base line, that I did not think I needed, she said suddenly she was going into allergy med full time so I was stuck with another Rheumy who insisted since I had gone sero negative I did not have sjogren's.  It was because I did not show positive at the hospital but I had already gone sero negative.
I am not even going to try to explain what garbage this Rheumy that I had once liked so well had to say, but she had been talking to the Rheumy I had been seeing, who insists I don't have sjogrens but tried hard to put me on plaquenil and so on.  I can tell you all about her love life which we got updates every apt.  The reason I had stayed there was it was a window to get help if I had to be sent to another specialist.  I had a leukemia scare and saw the head hematologist at a good hospital that the Rheumy referred me to.
No sense in explaining any more except the hematologist said the original labs that had dx'ed my sjogrens were just fine for that and hospitals want you to use their hospitals.  Yes, I would have to be re dx'ed but from the way she was talking I doubt they would even look at the blood.
Sorry for the tirade.  Thanks Joe my hubby wants to try to look up and figure out the machine you just got.




   

Confused

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Re: Vent
« Reply #5 on: July 27, 2019, 08:46:15 AM »
Thanks Shelly,

I had figured I would not take another test ever from that hospital.  I was offered one yesterday as sometimes labs are wrong or so the Rheumy said!  Does that mean her lab could be wrong twice by saying I had the right blood work done twice from her lab??  When I first met her she said her lab didn't make mistakes like the other labs did...

I had a friend ( sjogrens was really bad) who's heart would literally stop.  She worked with a really good Rheumy that was not taking patients when I started at this hospital  He really went all out to try to help her.  During an acute flare she needed something from the endocrinologist.  The endocrinologist said she had to make a sudden move to a different state and couldn't help her. 

My friend made it through the flare but there was a critical need for the endo.  The endo did not move.  She didn't have to.  She just did not want to work with my friend!!!  Cute.  Who runs that  hospital??   That incident should have told me the values of that hospital.

I have no idea how I will handle this.  I will never see that so called Rheumy again.  I have already been told that to get a good doc is not likely.  I have friends without sjogrens in different states and they can not find a good doctor.  I'm old and therefore why bother with someone who is old. 


araminta

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Re: Vent
« Reply #6 on: July 27, 2019, 10:34:56 AM »
I don't know what to say,  Confused, the situation sounds unbelievable.

As you know I'm in the UK and with the NHS, so I don't completely understand your health system.   Is this all down to money, do you think?   I mean hospitals getting themselves paid to do unnecessary tests and treatments.  :(
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

irish

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Re: Vent
« Reply #7 on: July 27, 2019, 10:40:21 AM »
There is no explaining some of the junk that goes on when we are trying to get treatment., Been there done that.

My only advice is to find another doctor or just stick to an internist who will treat your symptoms. Life is getting more complicated and with the government regs and insurance regs it is going to hit us all sooner than later., If I sound cynical, I sort of am. Autoimmune is a very confusing place and for some reason there is a lot of junk out there about Sjogrens.

I have so many things occurring because of Sjogrens but have so far been seeing docs that try. What more can I say. There is no cure at this point so the try is the best we can do. Not trying to make you discouraged but do want you to know that we have all pretty much faced this in some way or form and shed tears. Good luck. Irish

P.S. I started over trying to find help quite a few times and had the same tests over and over cause nobody believes the tests done else where. And cat scans....I should glow in the dark. I am 76 and still trying to sort things out. Luckily have a good internest who is getting frustrated though. You can find a new doc. It is not impossible but I would avoid trying to find a new rheumy cause they are few and far between. Actually I have had bad luck with 4 rheumies cause they didn't know that much about Sjogrens. I have not figured out that concept at all.
« Last Edit: July 27, 2019, 11:39:39 PM by irish »

sixty

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Re: Vent
« Reply #8 on: July 27, 2019, 05:46:47 PM »
Yes, isn't that odd??  Sjogrens is such a prevalent disease and so few docs really know that much.