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Sjogrens Topics => Living With Sjogren's => Topic started by: irish on March 31, 2008, 09:30:56 PM

Title: Discovery Health Channel--Sjogrens
Post by: irish on March 31, 2008, 09:30:56 PM
I watched the show Mystery Diagnosis tonight on Discovery Health Channel. In the advertising there was a section that made me think they will be having Sjogrens on next week. The info referred to some health issues and then the gal said "I got so I couldn't cry". Now if that isn't sjogrens I don't know what else it could be.

Anyway, the show will be airing next Monday night on Discovery Health at 10PM Eastern and 9PM Central time. If any of you folks see or hear anything else relating to this or if I got the time and date wrong would you please post the info on this thread. Thanks to all. Irish ;D
Title: Re: Discovery Health Channel--Sjogrens
Post by: Pooh on April 01, 2008, 06:03:30 AM
Thanks Irish I'll keep an eye out for it.  I missed it the first time it was on.

Hugs, Pooh
Title: Re: Discovery Health Channel--Sjogrens
Post by: Scottietottie on April 01, 2008, 08:33:00 AM
OOOOooooooH - maybe I'll be able to see that. I'll be over there then! Thanks Irish!

Take care - Scottie  :)
Title: Re: Discovery Health Channel--Sjogrens
Post by: Care on April 01, 2008, 08:37:20 PM
I saw the ad for it too.  I plan to watch if I remember!!!  It must be Sjogrens.  Pooh can you remind me to watch it?  Poor Pooh!
:)
Care
Title: Re: Discovery Health Channel--Sjogrens
Post by: gurs on April 02, 2008, 12:16:32 PM
It will prob be sjogren's, and they will make it out to be nothing, like just some dry eyes and mouth etc. Hopefully, if it is Sjogren's, they will tell the true story ,about how devastating it can actually be, including some neuro issues as well...just my thoughts & hopes.

Gurs
Title: Re: Discovery Health Channel--Sjogrens
Post by: Shari on April 02, 2008, 04:01:33 PM
Hope everyone gets to see it!  ~~Shari~~
Title: Re: Discovery Health Channel--Sjogrens
Post by: Patze on April 02, 2008, 05:19:29 PM
Hi folks,

Got to watch out for the ad, I don't seem to catch much on the tv anymore, but I'll look out for this one.  Thanks for the heads up!

Patze
Title: Re: Discovery Health Channel--Sjogrens
Post by: lynnmarie219 on April 02, 2008, 07:05:42 PM
Thanks for letting us know about this Irish...I'm going to watch out for this next week!  8)
Title: Re: Discovery Health Channel--Sjogrens
Post by: aprildawn on April 03, 2008, 11:51:42 AM
Thanks for finding out about this.  I went to discovery health channels web site and you can get email reminders sent to you to tell you when it is on.  Its on multiple times and different times a day.  The next time is 4/7.  I am definitely watching it.  I experienced a really sad moment the other day at work.  (hospital) A woman was admitted with pnuemonia/sjogrens.   She was spanish speaking and on welfare/no ins....  I talked to her daughter and she said her mothers  current dr said he hadn't heard of sjogrens and was diagnosed a long time by a rheumatologist and since moved.  She didn't take any meds and came to the hospital because of how bad her body felt and a bad cough.  I gave her some info and told her dtr about the website ( who was the only in the family with internet accesss).  After seeing her I thought about all the people out in the world that are suffering and don't know why. I know sometimes I feel like I am suffering and do know why and take meds.  Some times I feel bad and feel sorry for myself and then you go and see people like that. Gives you alot to think about. 

Aprildawn
Title: Re: Discovery Health Channel--Sjogrens
Post by: Shari on April 04, 2008, 06:00:38 AM
Good Morning Aprildawn~~It was kind of you to send them in the right direction to get help and support!   ~~Shari~~
Title: Re: Discovery Health Channel--Sjogrens
Post by: Care on April 07, 2008, 05:47:39 PM
The show is on tonight:
Monday, April, 7, 2008 at 10:00 PM ET on Discovery Health
 
Mystery Diagnosis
 
The Woman Who Couldn't Cry
 
Linda has been battling an astonishing array of ailments for over fifty years. While she continues to visit doctor after doctor searching for answers, no one can pinpoint exactly what's causing the random symptoms she experiences on a daily basis.

 It will be on again, I can post the times
Care
Title: Re: Discovery Health Channel--Sjogrens
Post by: eyeamdry on April 07, 2008, 07:44:00 PM
I am so mad.  Trying to find this channel...and finally I find the corresponding number and it's "not accessible" to me.  I pay sky high price for cable and I can't get this channel.  I'll call the cable co tomorrow and find out if they will/can add it.  Maybe I'll threaten to go to the other cable place.  Lucy
Title: Re: Discovery Health Channel--Sjogrens
Post by: Care on April 07, 2008, 08:05:28 PM
She has Sjogren's Syndrome.  Began at age 12, finally diagnosed 50 years later! 
I had symptoms in childhood, just never knew what exactly was wrong.  I had a brain hemorrhage at age 12.  That may have been the beginning. Then this strange fatigue began in High School.  I missed quite a bit of school and wondered if I was just lazy.  Not lazy. It was Sjogren's I am sure.

Care
Title: Re: Discovery Health Channel--Sjogrens
Post by: Care on April 07, 2008, 08:18:12 PM
It will be on numerous times
I am quoting Eastern Time

Mystery Diagnosis
"The Woman Who Could Not Cry"
Eastern Time Zone
Apr 12, 9:00 pm
April 13 12:00 am
Apr 19, 2:00 pm
May 04, 1:00 pm
Discovery Health Channel
They will send a reminder if you go here and request an email reminder
Hope you can see it

http://health.discovery.com/tv-schedules/series.html
Care
Title: Re: Discovery Health Channel--Sjogrens
Post by: kimbo on April 07, 2008, 08:22:43 PM
Having just read this. I found it was coming on again at my midnight. I've set my DVR to record it. Thank you for the heads up. It should be interesting.
Kim
Title: Re: Discovery Health Channel--Sjogrens
Post by: irish 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??
Title: Re: Discovery Health Channel--Sjogrens
Post by: gurs 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
Title: Re: Discovery Health Channel--Sjogrens
Post by: Waldop 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.

hugs
Barrie
Title: Re: Discovery Health Channel--Sjogrens
Post by: Waldop 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
Title: Re: Discovery Health Channel--Sjogrens
Post by: valora 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
Title: Re: Discovery Health Channel--Sjogrens
Post by: heyamy 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
Title: Re: Discovery Health Channel--Sjogrens
Post by: Waldop 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.

hugs
Barrie
Title: Re: Discovery Health Channel--Sjogrens
Post by: gurs 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..
Title: Re: Discovery Health Channel--Sjogrens
Post by: heyamy 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.
Title: Re: Discovery Health Channel--Sjogrens
Post by: Waldop 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
Title: Re: Discovery Health Channel--Sjogrens
Post by: Waldop 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!!

hugs
Barrie
Title: Re: Discovery Health Channel--Sjogrens
Post by: susiekline 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?
Title: Re: Discovery Health Channel--Sjogrens
Post by: Waldop 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
Title: Re: Discovery Health Channel--Sjogrens
Post by: susanep 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
Title: Re: Discovery Health Channel--Sjogrens
Post by: Care 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

Care
Title: Re: Discovery Health Channel--Sjogrens
Post by: irish on April 08, 2008, 09:00:00 PM
I guess I looked at the show a little differently than some of you. I thought they gave a good overview of the disease and they sure made it known that doctors don't pay any attention to people with these complaints. They mentioned dental cavities, eyes, fatigue, childhood stroke I believe, aching joints and muscle pains, gallbladder issues, heartburn, inability to tolerate bright lights and some I probably don't remember.

The thing that was interesting about the nurses training, army training and so many jobs was that she had her good days and bad days/or flares and remissions that became worse as she got older. The thing that was good about this was the way they pointed out that she was able to do these things but it darn near killed her and then the day came when she couldn't do it anymore. This is pretty much the way it is with most of us. We push ourselves until we get up one day and we have reached the wall and can go no further. If anything any medical personal watching this should get the idea about how ill people can be before they throw in the towel. Docs, we are all out there pushing and doing our best---we are not nut cases.

The reason I think this was an interesting way to put this was because we are all different in our ability to endure and snap back from physical and emotional setbacks and at the same time it let people know that if you are having any issues that are similar to this maybe you had better be more aggressive about getting medical intervention.

I don't think that 2 hours would have been enough time to cover issues as there are so many. Besides, I am sure they don't want to scare people to death.  Just my humble outlook on the show. However, I could not believe how slow that doc was about checking out the gals edema in the next disease on the show. They talked about so many months and then it turned out it was only 5 months. I really thought they were going to mean 12 months or so. It was very slow of that doctor not to run more tests by the 3rd month. A normal person doesn't have that type of swelling in their legs. Not even too much salt would do that!

We shall all wait for the next exciting episode. I watch it as much as I can as it is very interesting. Irish ;D
Title: Re: Discovery Health Channel--Sjogrens
Post by: Care on April 08, 2008, 09:17:52 PM
Good points Irish!  Well put. I just hope some doctors watch it.  What saved me was my primary care doctor.  She told me I was sick when other doctors suggested I exercise.  Shoot, I could barely move well enough exercise.  She insisted I was ill and sent me to The Cleveland Clinic.  My doctor there was number 9.  Eight others had done surgery, suggested I just needed to exercise or sent me to PT.  They recommend PT when they don't know what to do for you.  So your primary care doctor is your COACH. She said I was SICK!  Ha she was right!

Try to have the very best primary care doctor.
Care
Title: Re: Discovery Health Channel--Sjogrens
Post by: heyamy on April 09, 2008, 06:08:17 AM
Hi, Irish.
It's hard not to want more, more, more, especially for those of us who are not familiar with the program. We want a mini-series! Heck, I was still unsatisfied during the next segment with the woman and her kidney disease. I too can't believe that poor woman couldn't even get any interest from doctors for so long. And when she was going on that vacation to Florida, I was saying, "No! Don't go!"
 
At least one person in this thread commented that the Sjogren's segment seemed to imply that you can soldier through the pain. I didn't really see it that way, as the woman had to keep quitting things and couldn't even get on the floor to play with her son. But I think this disease and any similar insidious (as they often refer to it on webpages that describe Sjogren's) disease makes you supersensitive to criticism or skepticism because the progress can be slow and that just makes it more complicated to diagnose or adapt.
 
She did soldier on, but you are right that all of us eventually have to quit things and she did too. But during those years when we don't know what is happening, we tell ourselves like I did, that we're just lazy. Or imagining things. Even on days when I'm feeling good and have energy, I have this strong urge to remind people that this is rare. Because it is still difficult to accept that I can't do things like I should be able to at this age. And I still do need support from people because I'm having enough difficulty reminding myself that it isn't in my head. That just because you can't measure fatigue, it doesn't mean it isn't a huge issue and stops all activity. It is not laziness. Or depression. It's just my body.
 
It's what I was saying in a previous post. The medical community often assigns blame to us when they don't have answers. It's similar to society blaming the victim, I suppose. And I also suppose I did or still do the same. But I think this explains our sensitivity when programs mention how a person pushed past the pain. However, I do think this program presented her condition fairly: she truly did reach the wall, as you put it. And she reached it over and over again as her condition or lifestyle changed.
 
Not to open a can of worms, but one thing that bothered me is that the narrator and the way her childhood was presented seemed to place blame on her parents. My parents plan to watch this episode so I warned them to try to head off any guilt the program may inspire. I had a lot of similar childhood experiences and the last people I would blame are my parents.
 
All in all, it was really nice to see this. Thanks for alerting us!
Amy
Title: Re: Discovery Health Channel--Sjogrens
Post by: Waldop on April 09, 2008, 10:12:50 AM
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

Susan,

I hear oodles of people with Sjogren's that had some sort of gall bladder problems. Then of course, there are others that have other problems to deal with. That's usually the case with most autoimmune diseases. We don't all have the exact same path, but the steps are very closely related.

That was quite interested what they said about your gall bladder. Perhaps they should run a clinical trial on those who have Sjogrens and gall bladder problems. It would be interesting to find out the results.

hugs
Barrie
Title: Re: Discovery Health Channel--Sjogrens
Post by: Waldop on April 09, 2008, 10:19:31 AM
I find autoimmune diseases to be most fascinating, in and of itself. It's a shame that it's not done nearly as often as it should be. There are more people who suffer from these illnesses than people realize. That's why I do like bonding with others who share the same common enemy.(sorta speak)

What I especially liked about the segment on the show was the fact that as Linda was telling her story, you felt the way she felt. As I've stated on numerous occasions, you can't feel that way unless you've been in that person's shoes and that's exactly what we have been in!! Maybe our symptoms aren't exactly the same, but we know how it is to wake up in the middle of the night so parched nothing seems to help.

Nevertheless, we do appreciate you letting us know about the show. Maybe there will be more out there one day.

hugs
Barrie
Title: Re: Discovery Health Channel--Sjogrens
Post by: irish on April 09, 2008, 09:57:45 PM
One thing I want to add has come to me slowly over these past years. My mother was 36 when she had me(1st child) and had my sister at 39. I hardly remember my mother when she wasn't being emotional, having bad days, crying, having stomach pain, shoulder pain, fatigue etc. As she got older she had dry eyes and would always be clearing her throat and needing to get a drink when she talked on the phone. She just wasn't able to do much around the house and I did the washing, ironing etc. Sister did things also. Mom was either working at the store or home sick.

Now, interesting thing is that we didn't live near relatives and my folks had a business that sister and I worked in almost every day of our life after age 12 or so. We did not know any better as that is the way it was and we just dealt with it. My mom had a "nervous breakdown" (I now know why she had this breakdown--she was sick) when I was 10 years old and after that I know that she was treated differently by the doctors in the community. Doctors who then became my doctors-- and I now know that the baton was passed onto me and my sister. The docs thought of my mother as that emotional neurotic woman and hence her kids were also.

When I started having "aliments at an early age I just never thought that much about it and worked my way through it or rested etc. As I got older the problems I had became worse and as I doctored I never, ever got a good answer and usually was made to feel like I was a hypochondriac. It took me a long time to get the picture of all this. My medical records were a trickle down through the years and even the really good doctors that I went to still placed the "nut" label on me. This is one of the most hurtful elements of my disease. I really think that if a couple of these doctors had looked outside the box and had not listened to the gossip in our medical center I could have had better intervention.

I have had to work through this over time and it has not been easy. I still have a couple doctors I am going to write letters to and let them know about my health status. One of them was a really good doctor but he could be a royal you know what. I worked with him in the professional setting and when I was a patient he refused to send me for an ENT consult after a prolonged illness which entailed see 3 doctors who treated me for heaven knows what.)I missed 4 months work and started to lose my hearing and had terrible balance issues) Finally my hubby took me to him and he said I had a roaring ear infection(no ear ache til after antibiotic started and dizziness was terrible) plus I had walking pneumonia. He did not like it that I challenged him later and he also treated me like a nut.  Turned out the ENT sucked pus out of my ear and put in a tube.

Now, sorry for all the info but you needed to see the "before picture" and now I will give you the "after picture". One day I went to my psych clinic for a med check and who should I have to sit by in the waiting room. THIS DOCTOR. I did not say one word to him and he didn't say one word to me. He was embarrassed beyond belief and I didn't care because I KNEW that depression was a physical disease. I loved the ending on that one!!!!

So, unbeknownst to us our family issues can have a really big impact on us health wise. The thing is if you are brought up in that kind of an environment where life just goes on when there is illness(know illness or unknown illnenss), you just keep working and coping and going on with life no matter what.

I will also tell you that one of worst days of my life with this disease and doing work that had to be done was back in about 1979. We were remodeling our house and the north end of the basement wall was out and a big new basement dug but not closed in. Sand all over the house. The upstairs was all 2x4'x except for the bathroom. My hubby had a couple acres of hay to bale and the boys had to help him with that. Buttt, before the hay was done, we butchered 50 chickens and I ended up finishing up on these after dinner while the boys helped with bailing.Butchering chickens if bloody hard work. I had to cook meals and clean up the kitchen in the midst of this, but I was able to push my way through it. The human spirit is a wondrous thing.

I also had my period and it was a bummer of a month. It ended up that my folks came unexpectedly after supper and then the minister and his wife came unexpectedly a little later. Thankfully, we had all had baths etc by then. But, this was at a time when I was having an escalation in symptoms of undiagnosed myasthenia and sjogrens. I live in the midwest and there is a really strong work ethic here that has tickled down through generations.

Now, I never really told my hubby  how I was other than that I was really tired and hurt all over. I didn't know any better. I thought I was really tired and hurt. That is why we can push on so fully through these diseases. We have slowly learned how to cope with pain, weakness, illness, changing our lifestyle and schedules to adapt to our health status, etc and just blame it on being a mother and being tired. I know that I had to change jobs quite a bit when I was younger as I would just plain wear out and get sick and not snap back. I didn't know any better.

I can really see how this Linda was able to do the things she did. If we get an illness slowly and then it sort of goes into remission off and on, we are able to just keep pushing.We just work on the assumption that we had this before and it went away and now we have it again and it hasn't killed us, the doctors tell us nothing is wrong so it just must be something that must be endured and it is. My take on life as I know it from my generation. Irish ;D
Title: Re: Discovery Health Channel--Sjogrens
Post by: heyamy on April 10, 2008, 06:16:24 AM
Wow, Irish. Thanks for sharing your history. I grew up in a "stiff upper lip" household too but I see a lot of value in it because we always have to plod on, even when we are taken seriously by doctors. It may have made me feel more guilty when I finally hit the wall, but I can overcome that.
 
What really made me angry while reading your history is how you and your mother were treated. Sure, things were dismissed from time to time with me but I never really, really hit that attitude until three years ago when things went out of control. I'm still burning up about those doctors. I can't imagine the rage and despair and demoralizing you and your mother felt for so long.
 
Is your mother still alive? I'm so sorry for both of you.
 
Amy
Title: Re: Discovery Health Channel--Sjogrens
Post by: irish on April 10, 2008, 05:55:17 PM
Amy, There are quite a few of us out there with a "stiff upper lip" and we have all managed to survive and learn a lot while we were at it.

My mom passed away in 1984 at age 78 and I didn't realize until many years later that she was suffering from sjogrens.She was not very good at coping with her illness as she was very sensitive. She was born in 1906 so that probably explains a lot of how she dealt with things. All I know is that as I became more ill I would find myself relating to what she went through. They didn't know about this disease somuch back then.

I have never had a thin skin and I did not get totally freaked out about things for some reason. I have no idea where I got this personality trait but I have always used humor to deal with things and it has worked well for me. Also, my faith is very important to me and has sustained me always.

I always say that I must be a little slow because I don't take offense at things people would say or did to me at the time and just would use humor. On the way home or several days later it would occur to me that maybe I should be more upset about some of these things. I guess there aren't a whole lot of things that I think are worth wasting time and energy about. That is not to say that I haven't lost my temper and been assertive/aggresive at times but when dealing with doctors I would always get the same thing---she's a nurse and she is over reacting.

You don't have to feel sorry for me because in spite of everything healthwise, etc I have been extremely blessed in this life. I have a great husband and 3 boys with nice wives and grandkids, etc. There are lots of things I haven't been able to do but there are so many other blessings that I have experienced. Life is what we make it. If we want to sit and feel sorry for ourselves it is best to set aside a few hours, cry and moan and groan, get it over with and get on with life. Hope all is good at your house. Irish ;D

Title: Re: Discovery Health Channel--Sjogrens
Post by: Shari on April 10, 2008, 08:47:39 PM
Gurs~~~Just wanted to throw in that i also had my gallbladder removed that was, "just not working".  No stones or diesease.

Unfortunately I do not get the channel but will try to catch it at my friends house on one of the dates that was so kindly listed.

~~Shari~~
Title: Re: Discovery Health Channel--Sjogrens
Post by: salsen on April 11, 2008, 10:52:53 PM
Irish - I agree with you.  I thought the show was fairly informative for the short amount of time they have for each condition that is presented.  Like all other autoimmune diseases there is a ton of other things that go into the mix and makes life more difficult.  The important issue though is that SJS was given an airing.  So many people know nothing about this disease and are not aware of all the different areas of the body it can affect.  Hopefully this will help to awaken the public in general and many professionals to look a little harder and seemingly unrelated symptoms. 

It caught my eye about the gall bladder issue as this first became a problem for me back in the early 1990"s.  That is about seven years before other very significant symptoms began to pop up. 
Makes me wonder if the process actually began much earlier than I suspected. 

I think we all gear our selves up and push through when we absolutely have to.  I did this past Sunday to cook for about 20 people on the last day of my brother's visit.  Monday he headed back to California.   Did I pay for it the next two days  -  you bet!  Was it worth all the trouble --
YES!    I had not seen my brother in five years, it was well worth th pains to have all my family together again for a few hours. 

Mind over matter is a wonderful thing even for a few short hours! 

Lets hope more shows will attempt to present SJS  to the viewing audience.  Public awareness helps to bring about research funds.  We can only hope.
Title: Re: Discovery Health Channel--Sjogrens
Post by: Katybarstool on April 12, 2008, 08:04:43 AM
Hi everyone

I've been searching through all the tv listings, and altho I can see the Discovery Health Channel, I cant find any mention in the UK about the programme, which is a shame.

However, Irish Iidentify with you about the 'nut' label. I'm 51 now, had lots of illnesses as a child, including epilepsy, and had lots of joint problems at 14, which were put down to neuritis. I was marrried at 18 and between the ages of 22 and 25 had three children and once they were at pre-school, went to college alongside a part-time job and gained a honours degree.  It was hard work, particularly as two of the children had epilepsy, but I seemed to have enough energy to deal with things, until I reached about 40.  From then on I had tiredness, depression,menstrual problems, IBS, dry eyes, skin problems, ear problems ... At around 46 had a really bad chest and was diagnosed with asthma and bronchiectasis and had a tough time getting the meds sorted. Then the gyny problems got worse and aged 48 had two minor gyny ops and then total hysterectomy. Then within the next year, Sjogens and osteo arthritis. I have also had many episodes of 'flu-like symptoms.

Sorry, I don't mean to moan, but, as many of you have identified, my gp - and the other practitioners in the practice treat me as a total nut.  I have reached the stage now where I do my best not to have to visit the healthcentre, even sending a postage paid envelope for my prescriptions.  I am now in the middle of a major fatigue, and am having to take a days annual leave each week just to get me through at work. I know in my heart that I ought to go for a checkup, but you know, you get to feel a fraud for so long, that it takes a lot of strength and determination to make that appointment. It just seems too much like hard work.  Anyway, I have rambled, so thank you for perservering.

Could I just ask a question now? Does anyone find their blood pressure increases when they are extra fatigued? I'm also worried about having that checked, as I don't want to have my hrt or celebrex withdrawn due to high bp.  Woe is Kathy :'(     

Title: Re: Discovery Health Channel--Sjogrens
Post by: gurs on April 12, 2008, 11:26:16 AM
Kathy,

I was told by many of my doctors that BP usually increases when your really sick or feeling ill.
I have very low BP, but a few super bad flares, it just went way up, and came back down when I was feeling a bit better....

Gurs
Title: Re: Discovery Health Channel--Sjogrens
Post by: Shari on April 12, 2008, 04:16:29 PM
Kathy~~I have issues with regulating BP.  I will have to keep track of the circumstances.~~Shari~~
Title: Re: Discovery Health Channel--Sjogrens
Post by: irish on April 12, 2008, 07:05:08 PM
Kathy, You don't have to worry about moaning and groaning here. I just did that really lengthy post about my childhood because I wanted others to know that sometimes life can "sucker punch" us and we don't even know it. I still loved the restaurant business in spite of having to work so much.

Anyway, you have had your share of  ailments and they do pile up don't they. I guess if it was me I would now push forward and get some help. There is much more known about autoimmune than previously and now that you are older (pardon me) you will be more apt to be listened to also. Age is a good thing at times. Make sure to keep a log of all your pains, aches, fatiuge and give precise descriptions of what is hard for you to do with your fatigue.

Also, many of the people here are being treated sooner with Plaquenil as docs are learning to try and control the "beast" earlier. The truth of the matter is that you need to get that blood pressure treated before it damages your kidneys or you wake up paralyzed from a stroke. Yes, I am instilling fear into you. I don't think that they will necessarily take you off of your HRT because of  blood pressure. Did you have your ovaries out?? If you did you are probably just on estrogen and that is a whole different ball game. You need to talk to your doc and your gynecologist. You need to take care of yourself cause some day you will be a grandma and that is really fun!!! Irish ;D
Title: Re: Discovery Health Channel--Sjogrens
Post by: kimbo on April 12, 2008, 07:54:47 PM
Irish, I so appreciate all your input in all your posts. I have not been posting much and I am still reading and learning and soaking up all you Heroes. You really are heroes. Thanks for your history and for sharing your path in this health issue. I think you might even be more beautiful than that discovery lady.
Title: Re: Discovery Health Channel--Sjogrens
Post by: Schoolmarm Oma on April 13, 2008, 03:11:28 AM
For those who missed it or can't get the Discovery Channel: I missed the episode but a friend saw it and told me about it. I was able to download the podcast from health.discovery.com/   and watch it on my computer.  We could all add more to the program, but it would take years to tell all of the complex symptoms and emotions of Sjogrens. I'm just thrilled that the episode was aired at all... the more publicity we can get, the better for us all!
Karen
Title: Re: Discovery Health Channel--Sjogrens
Post by: Katybarstool on April 13, 2008, 05:13:52 AM
Hi Irish

Thank you for your kind advice. I kept one ovary, but I think it decided it was past it's sell by date, as I was having the flushes even before leaving hospital. :-[.

By the way, I am a grandma - our eldest son has a 2 1/2 year old boy and our youngest son has a 22 month old (who is going to have a baby sister in August). 

I am going to talk to the health care assistant on Tuesday about my BP. You are right, just taking oestrogen is not the same risk as taking combined oest/prog. but health professionals are not always aware of that. In the UK, we don't routinely see gynaecologists - just if we are referred due to something more major.   

I have been taking celecoxib (for arthritis) for almost a year now, and that can increase blood pressure, but having said that, my bp is lower now than it was last year when I was pretty unwell, so I don't think it has necessarily caused the recent rise. My gut feeling is that that is due to the Sjs flare up.

Part of my problem - i guess, is that I am getting heavier as I struggle to do very much exercising. Even standing for more than a few minutes causes me shin pain, or knee and hip pain. I used to enjoy swimming, but developed a severe reaction to the chemicals in the pool, so now I jsut swim in the sea once or twice a year.  However, I know I am lucky in lots of respects, as I am still managing (just) to work full time. I'm office based, and sit down most of the day, which is helpful so far as the joints are concerned.

I can't believe it took me nearly a year to find this wonderful site. I guess I am still trying to find out more about this condition, and to come to terms with it. It's a learning curve for my husband and the boys too.

Happy Sunday everyone.

Kathyx       
Title: Re: Discovery Health Channel--Sjogrens
Post by: irish on April 13, 2008, 11:28:13 AM
kimbo, Golly gee!!!! You really made my day as I sit here looking like something the cat dragged in!!!

I know that I have the Irish tendency to talk and talk and it goes into my keyboard. I do give out more history etc than is necessary at times but I am not trying to draw attention to myself. I just want others to know that I am a real person with a history etc and that life is what it is. Sometimes things happen that we have no control over and how we react to them will certainly make a difference in our lives and the lives of those around us.

I still beat myself over the head for not being more aggressive in trying to get medical help and as I think back there are a few things I would have done differently in my qwest for a diagnosis. However, I really don't know if it would have made a big change in the time it took for me to get diagnosed or not.

I , too, am thankful for this group and the information I get from others plus the friendship of others I will never meet who understand what I am going through. Aren't we all just a great bunch!!!!! Hugs to all Irish ;D



Title: Re: Discovery Health Channel--Sjogrens
Post by: heyamy on April 13, 2008, 04:26:40 PM
Hey, Irish.
I for one appreciate all of the sharing you do here. It's not like we're a captive audience. If someone is not interested, s/he can just scroll past. But I think it's great that many people repeat things over and over again because sometimes people don't know how to check old threads for information or maybe their search argument doesn't bring up what they need.
 
So, thanks. It's great to "know" you and your history.
Amy
Title: Re: Discovery Health Channel--Sjogrens
Post by: ktfabian on April 13, 2008, 07:10:05 PM
Irish wrote: "When I started having "aliments at an early age I just never thought that much about it and worked my way through it or rested etc. As I got older the problems I had became worse and as I doctored I never, ever got a good answer and usually was made to feel like I was a hypochondriac. It took me a long time to get the picture of all this. My medical records were a trickle down through the years and even the really good doctors that I went to still placed the "nut" label on me. This is one of the most hurtful elements of my disease. I really think that if a couple of these doctors had looked outside the box and had not listened to the gossip in our medical center I could have had better intervention."

Irish-what you said here really rang a bell with me.  In my teens, I can remember that the terrible headaches started, I carried Visine with me everywhere.  There was the fatigue and dry, dry, dry peeling skin on my hands in the winter no matter what I did. 

My Mom was a nurse, but she never believed any of what I told her.  She called me a hypochondriac and actually tried to have me committed when my symptoms got really bad a few months after I got married.  When she would take me to a doctor, she would start out the visit by telling the doctor that she really didn't think anything was wrong with me, but she was tired of my complaining so she brought me in. 

It wasn't til I got to know her sister (my aunt) when my husband got transferred to a job in a small OK town that my aunt and uncle happened to live in.  She told me of the family history of thyroid disease and other immune problems and my new doctor did one simple test - found out the problems that were "all in my head" were actually symptoms of hyperthyroidism.

For what it's worth, by the time I was in my teens, my Mom was a very unhappy, full-fledged alcoholic who admitted she didn't like me at the time and she says she did the best she did. Oh well.

I didn't get to see the special as we don't have cable, but I'm going to go see if I can see in on my computer,
Tracy
Title: Re: Discovery Health Channel--Sjogrens
Post by: irish on April 13, 2008, 09:26:02 PM
Tracy,. It just goes to show you that we all have a past, a present and a future and how we accept and relate to these times can make a big difference in our lives.

We can't change the way our parents acted towards us nor can we change the health history that comes with us when we are born. We just have to do the best we can. Sitting and thinking "poor me" does not one iota towards making us a better person. Some of the greatest people I have known or heard about are people that struggled through adversity and succeeded. They may not have been famous or rich, but they impacted others in some way.

So here we all sit waiting for our chance to make a difference. "Hug a kid today" or whatever comes your way. Irish ;D
Title: Re: Discovery Health Channel--Sjogrens
Post by: celticgoddess on April 26, 2008, 07:55:43 AM
I had my husband watch the Discovery Health channel program I taped on Sjogren's and it gave him a better understanding.  He is very supportive and even he tells me to watch my limits.  They finally put Sjogren's in the Social Security "little black book" on March 20 or 30,2008.
Read it online.  Maybe now they will give me my SS.  I have neuropathy and it is getting worse on my right side and I am very afraid of losing the use of my right leg.  For years everyone thought I was making it all up.

I also had all my teeth filled as a child even before I got my second teeth.  I used to get what my mother called gum boils and she would make me rinse my mouth with hot salt water.  I used to complain that my legs hurt and would someone please carry me up to the age of 7 or 8.  Of course, no one paid any attention to the fact that something was wrong.

At least at 52 I am getting treatment.  And I am thankful to all of you who post on here so that I know someone out there understands.
I am starting to get edemas inside my right ankle and outside of my right calf.  I go to see an endocrinologist on Monday and who know what more tests are in store.  I just want to find some way to treat it before it gets out of control and my leg swells up. 

I guess my main problem is that, just as I adjust my life and think I have it arranged and know my limits,  I come up with some other problem to create even more limits.  I refuse to give up my gardening even if I have to scoot along the ground on my behind and plant tomatos.
Just lost my mom on April 8 to ovarian cancer and it was a long month of going with my sister and sharing her care until the final 4 days when the pain got so bad we had to give her the morphine.  She was deaf so she could no longer read our lips so we had only touch to communicate.

It has just worn me out and I am trying to get out of the house now that spring has come and try to get back some energy.  The sunshine helps and I am working toward strengthening my left leg and my arms in case I do lose the use of my other leg.

To all of you, I appreciate reading your posts and it encourages me to do more.  I don't usually get on to post much because I have carpal tunnel in both wrists and typing is hard for me.  But I will try to get on more often.

celticgoddess
Title: Re: Discovery Health Channel--Sjogrens
Post by: Scottietottie on April 26, 2008, 10:11:58 AM
Hi Celticgoddess  :)

I'm another one who's always had lousy teeth.  I had nearly every baby tooth taken out because of gumboils (not all at the same time) I remember my legs hurting too - particularly in bed at night. I used to tell my parents my klegs were 'bored'. I thought if they moved they would hurt less but it never really worked.  I was told I had 'growing pains'.

Condolences for the loss of your mother. That whole experience must have been very draining.

You mention edemas and also carpal tunnel syndrome. Have you got a doc keeping an eye on your thyroid? Both things can be symptoms of hypothyroidism - and of course other things as well. If they are testing anyway - thyroid function tests may well be an idea!

Take care - Scottie  :)

Title: Re: Discovery Health Channel--Sjogrens
Post by: songbird on April 26, 2008, 01:06:59 PM
I saw it and they didn't make it out to be nothing. She did a great job of talking about all she had gone through for so many years without a diagnosis and even feeling like she was crazy. I kept saying the whole way through I bet she has Sjogrens I bet she does... I have the same symptoms all the time. Sure enough after 50 years she finally has help. I sure am glad I didn't have to wait that long! I was glad my husband was able to watch with me I think it helped him to understand as well.
Title: Re: Discovery Health Channel--Sjogrens
Post by: salsen on April 26, 2008, 02:18:18 PM
Katybarstool -  just read your post about BP.  I tend to have one that likes to be slightly erratic even with medication.  Two factors play a big part in this :   pain associated with pn and autonomic neuropathy.  Both of these can effect your blood pressure.   I lost 35 pounds about nine months ago and instead of helping the BP it became higher and the medication had to be increased.  As my doctor explained even if the autonomic neuropathy is the culprit the pressure still needs to regulated. 

It is interesting the responses received on those who have viewed the show. There is no definitive face of SJS.  We all have a connection through different symptoms but I would venture to say very few of us have the exact same symptoms or have progressed with the same rate with this disease. 

I had to go to the Urgent Care today because for some unknown reason I have a spot in the back of my neck that has become infected.  Since my skin breaks down fairly easy there is no telling what caused it.   Both nurses and the nurse practitioner hadn't  ever heard of SJS.  Then on to the pharmacy and again not a clue as to what I was talking about when asked any medical conditions that should be listed.  They all got a spelling lesson today LOL.   Needless to say more shows like this are greatly needed. 

Irish keep up the talk!  We can have a grassroots campaign to enlighten the world about SJS!
Title: Re: Discovery Health Channel--Sjogrens
Post by: eyeamdry on April 26, 2008, 06:25:47 PM
Quote
I also had all my teeth filled as a child even before I got my second teeth.  I used to get what my mother called gum boils and she would make me rinse my mouth with hot salt water.

Oh my!!!!!! Gum boils, I remember them well.  I don't think I've heard the term for......oh say decades.   
Title: Re: Discovery Health Channel--Sjogrens
Post by: Care on April 26, 2008, 09:27:53 PM
celticgoddess

So sorry to hear of your loss.  It is so difficult to lose a parent.  I do understand.  Time does help.  My dad died of cancer. Changes our lives forever.

Hugs
Care
Title: Re: Discovery Health Channel--Sjogrens
Post by: irish on April 26, 2008, 09:52:14 PM
celticgoddess, My sympathy to you on the loss of your Mom. I hope that you have been able to get some rest and to relieve some of the stress brought on by this event.

Also, I have never heard of gum boils. I would imagine that this was some sort of infection around the base of the tooth. Boy, you learn something everyday. I have gone through a lot with my teeth. They sort of ruled my world for about 15 years and were a problem since I was young. Had to have one of my baby teeth pulled in the middle of the night when I was about 7 years old. Imagine it was abscessed. An old dentist that reminded me of a "horse doctor" did it. It was a miracle that I didn't get bad infection.

salsen, Hope you get over this infection without any unususal issues. Irish ;D
Title: Re: Discovery Health Channel--Sjogrens
Post by: Katybarstool on April 27, 2008, 04:13:21 AM
Ceticgoddess

I'm so sorry to hear that you have had so much to cope with recently. My heartfelt sympathy goes to you.

Teeth - mine were a nightmare. Between the ages of 16 and 18 I was at the dentist nearly every week. Usually with broken or cracked teeth or dental abscesses. I eventually had half of them pulled aged 19 and the other half when I was expecting my first child at 21.  I was glad to see the back of them ;D

Interestingly, I have also had joint pain since my early teens, and periods of extreme tiredness that were always put down to depression. I'm  51, and  have only been diagnosed since last summer.  I could have kissed the (very grumpy) rheumatologist, who diagnosed me :D.

Happy Sunday everyone.

Kathyx   
Title: Re: Discovery Health Channel--Sjogrens
Post by: Linda196 on April 27, 2008, 05:57:14 AM
Hi Celticgoddess,

I'm sorry to hear of your loss. I, too, lost my Mom to ovarian cancer, and I remember too well my sister and I sitting with her, trying to anticipate her needs as she became to weak to let us know. As time passed, I was more and more able to remember the happy times, and the fun things that made it easy to celebrate Mom's life more and grieve her loss less, that time does come.

I remember a lot of "growing pains" and dentist visits as a child too, but I had Rheumatic fever when I was 5 (at least that's what was diagnosed) so it could go back to that. I'm sure the poor teeth were a direct result of long term tetracycline (brand new wonder drug then) to treat the RF.
Title: Re: Discovery Health Channel--Sjogrens
Post by: genko_b on April 27, 2008, 08:25:55 AM
Rheumatic fever, hmmm. Both my brother and I had that as children, and then as a young adult I had a bout of pericarditis that came out of nowhere. It was immediately after that I began developing the symptoms that were diagnosed as rheumatoid arthritis. Is there any connection, or is it just a very common childhood disease for people our age?

Genko
Title: Re: Discovery Health Channel--Sjogrens
Post by: Linda196 on April 27, 2008, 09:16:09 AM
Genko, I don't know how common it was considered to be, but I've always wondered if it had any bearing on my health history as an adult. After all, who knows if it was even correctly diagnosed back them. I, too, have had a couple of bouts of pericarditis (enough that now I don't even go to the doc, just take the NSAIDS for 2 weeks...I know, not the way to handle it at all  ::) ).

I'm sorry if my memory is faulty about this, but is the brother who had RF as a child the same one you referred to as having had sarcoidosis? I worked with a medical resident who was fascinated by my history, and used it in one of his studies...he seemed to think there was a strong link between the RF, the Sarc, and all the AIs. Too bad he was "only a student" and not in a position to actually do some real beneficial research...last I heard he was a medical missionary, so I doubt that he has time for much of anything but his practice.
Title: Re: Discovery Health Channel--Sjogrens
Post by: genko_b on April 27, 2008, 10:39:45 AM
Hi Linda:

Yes my brother who died of sarcoidosis had rheumatic fever. He was very ill with it and almost died. He was also a preemy, though, and his lungs never did work right. He had asthma and frequent bouts of respiratory infections as I recall.

Genko
Title: Re: Discovery Health Channel--Sjogrens
Post by: Tamik on April 27, 2008, 05:11:46 PM
I never thought about my leg pains as a kid being related -I had "charlie horses" all the time as my grandma would say.  She would prop my legs up and bring me icecream!  My daughter (11) complains all the time of being thirsty and her legs hurting -the pediatrician refused to test her. I am switching her doctors.  He was doing labs on her anyway!  Arrogant kind of guy.  TamiK
Title: Re: Discovery Health Channel--Sjogrens
Post by: genko_b on April 27, 2008, 08:12:19 PM
Good for you switching to a doctor who will listen. You may be able to save your daughter some discomfort by treating things early.

Genko
Title: Re: Discovery Health Channel--Sjogrens
Post by: Shari on April 28, 2008, 04:53:30 PM
Celticgoddess~~~My sympathy on your Moms passing.  My Mom was also deaf..the four days my sister and I were at her bedside in the hosp. involved touch and singing with her hand on my chest so she could feel me sing.  Thinking of you.

Keep up the gardening~~!!  Yes, just when things have leveled off and adjustments are made some other ailment rears it head~~especially after a stressful time.

back on track~~~~can someone give me a time when the documentary will be re aired?/  Thanks

~~Shari~~
Title: Re: Discovery Health Channel--Sjogrens
Post by: Pooh on June 15, 2008, 03:46:51 PM
Just thought I would let everyone know that missed this.  It will be repeated tomorrow night Monday June 16th, on the Discovery Channell at 10:00 P.M. 

Pooh
Title: Re: Discovery Health Channel--Sjogrens
Post by: sunamie on June 17, 2008, 03:45:55 PM
Pooh

Was switching channels and found it on last night. Caught the last half of it.  Hoped they would talk more about it. I recently was diagnosed (3 months)and am just starting to deal with my symptoms. Last year I had extreme heartburn and pancreatitus (sp). Sounds like things were brewing then.

I also have had what I thought was hot flashes from menopause for three plus years now. Is anyone always hot and have flashes? If I do not have "moving air" with a fan at my desk I cannot stand to be in the office. Of course the air cannot hit my eyes!   My husband says I am the only one with air conditioning on in the car in the winter. Thank goodness we have dual control.

Sunamie
Title: Re: Discovery Health Channel--Sjogrens
Post by: Pooh on June 17, 2008, 04:00:52 PM
Sunamie,
I'm sure it will be back on soon, it made the rounds the last time.  Keep an eye on your channel listings.

I had similiar problems with the hot and cold phases, but then they suddenly quit.  Don't know why, but I wasn't going to inquire either.  I sure didn't want them back.   I sometimes get a spell where I can't get warm, but it doesn't last very long. 

I hope you can get your "thermostat" regulated, it's very uncomfortable when you go through this.

Pooh
Title: Re: Discovery Health Channel--Sjogrens
Post by: mcdreamyfan on June 22, 2008, 08:34:09 AM
I was very disappointed in the show. I recorded it last night and had my husband watch it with me.... There was NOTHING new in that show.  Maybe it was good for someone who has Sjogerns and didn't know it, but for a person with Sjogerns it wasn't 'enough'.... sorry but I was disappointed in the show... :'(
Title: Re: Discovery Health Channel--Sjogrens
Post by: Nathan on August 26, 2008, 02:36:15 PM
This is on again this weekend. I missed it the first time. (And I'm a Mystery Diagnosis junkie too...)