Author Topic: Discovery Health Channel--Sjogrens  (Read 24772 times)

irish

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Re: Discovery Health Channel--Sjogrens
« Reply #15 on: April 07, 2008, 08:43:23 PM »
I watched it tonight and it was good. The only problem is I wish I was as good looking as she is. Wow, she was beautiful when she was young. Sounded like the same story we have all heard a hundred times from ourselves and others. I was surprised that she didn't mention anything about her lungs though. Also, didn't mention what medication she was put on. A good show though. I hope some doctors watched it. lol Irish ;D

Lucy, Shucks, I am sorry that you don't get that channel. Drives us crazy trying to get good reception on cable, cell phones and internet. Remember the good old days when none of these extra monthly bills existed??

gurs

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Re: Discovery Health Channel--Sjogrens
« Reply #16 on: April 08, 2008, 05:43:39 AM »
I watched it also, but was not impressed. I wish they would have taken the time to go in depth a bit more..they didnt mention any gland swelling (parotid), hair loss and go into some of the CNS issues..Like it can also mimic MS?.Her opthalmologist diagnosed her, but they didnt mention a rheumatologist did they? Im sure it would have helped alot of people watching. Im glad for the awareness it may have brought though.

Gurs
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Waldop

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Re: Discovery Health Channel--Sjogrens
« Reply #17 on: April 08, 2008, 05:54:16 AM »
Thanks for tipping us off on this show, Irish. We owe you a lot!!

When I started hearing Linda's story it really made me think about my childhood and all the weird things I had and never really put together. As you so aptly stated Irish, we can all connect to what she said. I especially connected to her gall bladder. I too, had to have mine removed and they never really knew what happened. I was told that I had sludge and that my gall bladder was scarred. They hadn't an explanation to it, but after hearing her story last night, it all makes complete sense. The one thing I didn't quite comprehend, was when her doctor was baffled by all her gastro problems. Supposedly he said that on 10% of people have stomach related problems, and I find that a bit difficult to believe. From all the people I've spoken to who have Sjogren's, USUALLY  have stomach problems, due to the lack of saliva and difficulty digesting food. I too, have acid reflux and IBS as well. So how can the doctor say he was baffled by that.

In any event, it was a wonderful story and you felt as if you weren't alone in your quest to find the truth. Those many doctors Linda saw and just pushed her away, as if she were just some nut burger. This was exactly what I was referring to yesterday.

Nevertheless, I taped it and I'm going to keep it to remind me every now and then, that we're not alone in this illness.

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Barrie

Waldop

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Re: Discovery Health Channel--Sjogrens
« Reply #18 on: April 08, 2008, 06:07:22 AM »
I watched it also, but was not impressed. I wish they would have taken the time to go in depth a bit more..they didnt mention any gland swelling (parotid), hair loss and go into some of the CNS issues..Like it can also mimic MS?.Her opthalmologist diagnosed her, but they didnt mention a rheumatologist did they? Im sure it would have helped alot of people watching. Im glad for the awareness it may have brought though.

Gurs

Gurs,

You're absolutely right about them not even mentioning a Rheumatologist. While an opthalmologist is certainly one of the doctors that us Sjoggies have to deal with regularly, a Rheumatologist is the main physician who handles the course of treatment.

What I don't like about these curtailed shows is that they sort've rush what SOME of the symptoms are. They should've also mentioned that everyone gets Sjogren's in a different way. Some might have it tougher than others. For instance, I've been lucky when it comes to my eyes. I have more problems with my mouth and glands.

In any event, it did at least bring it out there. Now if other shows would take the lead and do the same thing, we'd be on to something.

hugs
Barrie

valora

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Re: Discovery Health Channel--Sjogrens
« Reply #19 on: April 08, 2008, 06:46:18 AM »
her name is linda charles and she works with the sjogrens foundation     that  was a big plug for the foundation and a good place for education and awareness    the program was informative

heyamy

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Re: Discovery Health Channel--Sjogrens
« Reply #20 on: April 08, 2008, 08:29:17 AM »
I watched it too. Thanks so much for the head's up!
 
I agree with the comments here that while it was wonderful to see some publicity and information, there wasn't nearly enough. I was expecting some information about the Sjogren's Foundation for anyone who might want to do some research. I suppose just having the name and spelling of the disease is enough to help some people.
 
I also would have liked to see more symptoms, especially lungs and carpal tunnel and other entrapment issues. And the similarities to lupus and MS. And confusion with diagnosing and the huge percentage of those who suffer with Sjogren's with negative test results. And did they mention this AI disease is only second to RA in the number of those who have it?
 
I guess the bottom line is...this was much better than nothing and much better than some dismissal that it's just "dry eyes and mouth." 
 
Amy

Waldop

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Re: Discovery Health Channel--Sjogrens
« Reply #21 on: April 08, 2008, 08:57:26 AM »
Amy,

You made some excellent points!! They really could've explained the similarities between Sjogren's and Lupus. Perhaps if they had just one segment instead of two, they might've been able to put some more information.  Considering we rarely get any information about Sjogren's, I'm grateful for the little we had.

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Barrie

gurs

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Re: Discovery Health Channel--Sjogrens
« Reply #22 on: April 08, 2008, 09:20:27 AM »
great points Amy......Its funny about the gallbladder thing though. I had mine removed
around 20 years and they said it just didnt function right? meaning, the prob didnt know why? They also dont know what happend to my one ovary either...I used to have one, then after endo surgery a few years ago, they said it was gone..wonder if that is also sjogrens related?
Uhmmm..
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

heyamy

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Re: Discovery Health Channel--Sjogrens
« Reply #23 on: April 08, 2008, 10:22:01 AM »
Hey there, Barrie and gurs.
I hope it's obvious that I appreciate the episode on this, despite the desire to have heard more. I've never watched this program and watched the next segment, wondering - this IS Mystery Diagnosis so it obviously covers those issues that are difficult to diagnose but my burning question is WHY!?! I guess I should be grateful that the opth I ended up leaving because of his arrogance at least knew enough to mention Sjogren's when he prescribed Restasis. 
 
That poor woman who had extreme swelling each week - why didn't any doctors figure out the issue?! Why didn't this Sjogren's woman get relief for her gall bladder years earlier? Why didn't anyone tell me I was having nerve pain, not joint pain? Why was I being told I might be panicked when I couldn't breathe, not accept that the panic came AFTERWARDS?
 
I just want to tell all doctors...
 
Dear Doctor,
If you don't know what it is, how about suggesting someone who might? It's no fair to just ignore it if you don't know.
Thank you.
Patient
 
Gee, I don't know what that red light means so I'll just ignore it. Here comes a car with flashing lights. Dunno what it is, so I'll just pretend it isn't there.

Hee. Thanks for letting me get that off my chest.

Waldop

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Re: Discovery Health Channel--Sjogrens
« Reply #24 on: April 08, 2008, 11:06:07 AM »
great points Amy......Its funny about the gallbladder thing though. I had mine removed
around 20 years and they said it just didnt function right? meaning, the prob didnt know why? They also dont know what happend to my one ovary either...I used to have one, then after endo surgery a few years ago, they said it was gone..wonder if that is also sjogrens related?
Uhmmm..

Gurs,

I don't want you to think I'm prying, but what did happen with your ovary?? Why did you need surgery??  I find Sjogren's always has us asking that question???

take care.

hugs
Barrie

Waldop

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Re: Discovery Health Channel--Sjogrens
« Reply #25 on: April 08, 2008, 11:09:30 AM »
Hey there, Barrie and gurs.
I hope it's obvious that I appreciate the episode on this, despite the desire to have heard more. I've never watched this program and watched the next segment, wondering - this IS Mystery Diagnosis so it obviously covers those issues that are difficult to diagnose but my burning question is WHY!?! I guess I should be grateful that the opth I ended up leaving because of his arrogance at least knew enough to mention Sjogren's when he prescribed Restasis. 
 
That poor woman who had extreme swelling each week - why didn't any doctors figure out the issue?! Why didn't this Sjogren's woman get relief for her gall bladder years earlier? Why didn't anyone tell me I was having nerve pain, not joint pain? Why was I being told I might be panicked when I couldn't breathe, not accept that the panic came AFTERWARDS?
 
I just want to tell all doctors...
 
Dear Doctor,
If you don't know what it is, how about suggesting someone who might? It's no fair to just ignore it if you don't know.
Thank you.
Patient
 
Gee, I don't know what that red light means so I'll just ignore it. Here comes a car with flashing lights. Dunno what it is, so I'll just pretend it isn't there.

Hee. Thanks for letting me get that off my chest.

Amy,

That's the $64,000 dollar question!! It's not so much about Sjogren's itself, but rather, why do so many health professionals miss the signals. I realize that time is a great enemy with illness. Sometimes until research can be done, some of these health professionals really don't know what's going on. But then I ask, why are there others who do bone up on illnesses that aren't as common. Your statement about a car with flashing lights, is the perfect analogy!!

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Barrie

susiekline

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Re: Discovery Health Channel--Sjogrens
« Reply #26 on: April 08, 2008, 11:53:05 AM »
I watched it too. Battling my husband for control of the TV because he wanted to watch the NCAA Championship (yay, Kansas!).

The only thing I didn't like about the show was the fatigue part. They stressed the fatigue and the aching joints, but then said she made it through Army basic training by putting one foot in front of the other. I read so much about the terrible fatigue people suffer and I don't want people to think that those who suffer just aren't willing to try hard enough.

I was also surprised that there was no mention of a rheumatologist. Or even blood work for diagnosis.

Am I the only one who wonders why blood work was never done along the way?

Waldop

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Re: Discovery Health Channel--Sjogrens
« Reply #27 on: April 08, 2008, 11:57:14 AM »
I watched it too. Battling my husband for control of the TV because he wanted to watch the NCAA Championship (yay, Kansas!).

The only thing I didn't like about the show was the fatigue part. They stressed the fatigue and the aching joints, but then said she made it through Army basic training by putting one foot in front of the other. I read so much about the terrible fatigue people suffer and I don't want people to think that those who suffer just aren't willing to try hard enough.

I was also surprised that there was no mention of a rheumatologist. Or even blood work for diagnosis.

Am I the only one who wonders why blood work was never done along the way?

Susie,

I too, was wondering about the blood work. I hadn't heard a thing about the SSA/SSB antibodies and that really should've been mentioned. They only mentioned blood work as far as after she had the gall bladder surgery.

As far as her not having any blood work along the way, I somehow think the doctors that she went to, were only focusing on her eyes, until she met up with this doctor in Philadelphia. Of course, that's just my take on it.

hugs
Barrie

susanep

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Re: Discovery Health Channel--Sjogrens
« Reply #28 on: April 08, 2008, 06:33:16 PM »
I am having a poor me tonight guys. Went back to work today on my meds for what I know is bronchitis. Walking in this morning,one says, feeling better now ? My fibro also hurt bad-muscle spasms.

I read here about this program, and so glad, but don't think I get it, because we just have the basic family channels package.

It really hit me what you all said about the gallbladder. I had it tested once, and doctor said dye wouldnt go in, because it was dried up and non-functional.

I turn 55 in May, and feel like a LOT has been lost.

The other day when I seen regular gp she said mrs.p you need to get out and walk more.

WHAT? HOW?

Husband let me know her office called and said we are to come in this saturday for a follow up.
I am flaring right now and she will probably want to know AGAIN when to set up for mammogram etc.

Oh Brother-The way I feel-You guys might tune into the news !!  LOL

susanep :o
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

Care

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Re: Discovery Health Channel--Sjogrens
« Reply #29 on: April 08, 2008, 08:29:26 PM »
I think the point of the show was to present an illness that can be mysterious, and Sjogren's surely fits that criteria.  Actually there are some of us who don't see a Rheumy.  The main doctors treating me for 14 are neurologists.  I  have had Sjogren's for over a decade and am just now being referred to a rheumy.  For years the rheum's sent me back to the Neruo. That may happen again.  Blood tests can be normal and you can still have Sjogren's.  This illness can cause problems in so many organ systems.  It would be impossible to give an overview of Sjogren's in a mere 30 minutes.  I have some digestive problems but neurological problems are my biggest concern. So I could complain that they did not address my problems. I wish they had.  I was just thrilled that Sjogren's Syndrome got some exposure.

They did mention that Sjogren's can affect many systems, they listed them and went on.  My eyes are not a huge concern -pain and fatigue are.  The show only touches on the illnesses presented.  It is not like this was a special show on Sjogrens - I wish!!  ;D

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