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Sjogrens Topics => Living With Sjogren's => Topic started by: Zeta on June 09, 2008, 06:36:38 PM

Title: I can't believe doctors sometimes...
Post by: Zeta on June 09, 2008, 06:36:38 PM
My doctor told me that if I had Sjogren's syndrome, my tongue would look like a cobble stone road. How many of you that have been diagnosed have a tongue that looks like that? He said that my red and white tongue is normal and not indicative of Sjogren's. Is there any validity to that? Or is he just dumb? Because from what I know about Sjogren's, a tongue that bad probably comes from having had progressive disease for many, many years. I've only been showing symptoms for 2 and a half years.

I also wanted to mention that I was pretty much given proof that my dry mouth and eyes and EVERYTHING is probably autoimmune. He gave me some cortisone shots in my hips to treat my "bursitis" and with in about 2 hours I felt better over all. Its not in my head. My tongue is almost pink. Still some white, but not nearly as much. And my eyes don't feel like they have sand all in them. How long can I expect to keep experiencing the relief? Will it be gone tomorrow? Whats a sure fire way to know that the injection is helping me and its not in my head? Thanks.
Title: Re: I can't believe doctors sometimes...
Post by: Joe S. on June 09, 2008, 07:26:58 PM
Hi Zeta.

DO NOT let anyone tell you it is "All-in-your-head". Find a good Rheumy and get a good Dx. I think that is your best first step. They will take blood samples that will help find the correct Dx.

Do not worry about when the pain will come back...enjoy your freedom from pain in the present.
Title: Re: I can't believe doctors sometimes...
Post by: lynnmarie219 on June 09, 2008, 07:38:48 PM
Great advice Joe!

Btw....I have sjogrens...diagnosed by symptoms, positive labs, and a positive lip biopsy and my tongue DOES NOT look like a cobble stone road! That is why I went to a doctor and now I take medications to give me saliva and drink fluids and keep my mouth moist with other OTC products....so that it doesn't end up looking or feeling like that!

Where do these some of these doctors come up with these crazy ideas and opinions?? I yiyiyiyiyi!
Title: Re: I can't believe doctors sometimes...
Post by: Debora on June 09, 2008, 07:52:58 PM
Hi Zeta

My tongue doesn't look bad, sometimes it does look all torn up. 
I went thru heck and back with the doctors I had seen to find out why I was like this.  I've learned to interview the doctors once I had a diagnoses.  My rhuemy is 100 miles away one way and wanted me to have a doctor from my area to help maintain me.  The doctors that said that sjogrens is just dry eyes and dry mouth, I let them know in a nice way that it is more than that and to please read up on it.

I knew I hit the "Mother Lode" when I found a specialist here that was so happy to finally have a sjoggie patient!

Hang in there!
Debora
Title: Re: I can't believe doctors sometimes...
Post by: eyeamdry on June 09, 2008, 08:50:25 PM
My rheumy is 150 miles roundtrip and I feel like I have the "jackpot."  Bad part is I'm afraid she'll retire, but I'll stay with her til that day.  My GP, who is closeby does the in-between followup and bloodwork.  It's worth the trip for me and this seems to be going well.   Lucy
Title: Re: I can't believe doctors sometimes...
Post by: irish on June 09, 2008, 09:50:14 PM
Zeta, I would be willing to bet that most sjogrens patients don't have cobblestone tongues. It depends of the patient and the type of dryness that they have.

Also, the cortisone shots that I have had in the past last about 2-4 weeks.  I think that your doc needs to learn more about Sjogrens. I was sick for 40 years with the aches and pains, heartburn, you name it and the last symptom I got was the dry eyes. Also, my mouth was dry but I always chewed gum and sucked on lifesavers(sugar free) and I just thought I felt dry from my thyroid medication. No 2 sjoggies or any other autoimmune patient are all the same. This is one disease that makes the doctors and the patients work to keep up with it. Irish ;D
Title: Re: I can't believe doctors sometimes...
Post by: Zeta on June 10, 2008, 03:26:49 AM
Yes. The shots are most definitely helping me. I woke up this morning and for the first time in months my mouth wasn't as white as a sheet (maybe that's an exaggeration but its usually pretty white!) and I didn't feel the need to run for the bottled water.

But I don't want cortisone to treat this. No prednisone. Nothing like that. I'd like to try plaquenil because it seems to be safer and as far as I know doesn't suppress the immune system. Right? The problem lies in getting lucky and finding a doctor that will treat me for it with out positive test results. No doctor I've ever gone to has treated me with out a positive test showing SOMETHING. I need to get out of Louisiana I guess.
Title: Re: I can't believe doctors sometimes...
Post by: Skylar on June 10, 2008, 05:11:44 AM
Hi Zeta, is this a rheumy that made that silly statement or general practitioner doctor? I doubt a rheumy would have said this. If this was the doctor I was using to treat my Sjogren's, I'd be out looking for a new one. I am glad you have found temporary relief with the cortisone.

I had an allergist who told me if I didn't use my inhalers for my asthma that I would get lung cancer - oh boy I left his practice immediately because this is not true.

Skylar
Title: Re: I can't believe doctors sometimes...
Post by: Joe S. on June 10, 2008, 05:32:08 AM
Hi Zeta, I looked for several years before I found my Rheumy. I talked to several MD's for recommendations but they had none. Then I hit on the Idea of asking people with fibro (the only Dx I had at the time). After about 20 people I had an Idea that it was a woman that I was looking for. I looked in the phone book for someone close and rolled the dice. I got somewhat lucky.
Joe
Title: Re: I can't believe doctors sometimes...
Post by: Heather Bell on June 10, 2008, 05:49:43 AM
Hi Zeta
Normal tongue here! Rest of me looks pretty darn good too.
But that's the problem with autoimmune, look well, feel awful.
Title: Re: I can't believe doctors sometimes...
Post by: LenV on June 10, 2008, 07:31:11 AM
My tongue is pretty bad, but not cobblestoned.  It's more slick and cracked ..no cobblestone look.  He needs to go back to school. 

How did they diagnose you with Sjogren's?

Billye
Title: Re: I can't believe doctors sometimes...
Post by: Zeta on June 10, 2008, 03:42:46 PM
I haven't been diagnosed with Sjogren's. He keeps saying either CFS, or fibromyalgia. But what he WOULD not stop saying is that I'm also probably just "stressed from school." And yes, this is a rheumatologist that made that dumb statement. I guess you're right. Time to find a new doc. I do have another question. He gave me the shots right at the joints where I was hurting. In both hips. So, it is safe to say that it is in my blood stream right? Its so nice to finally have saliva. But at the same time its a tease. Because I know I'm not going to get relief like this again for a LOOOOONG time.
Title: Re: I can't believe doctors sometimes...
Post by: Scottietottie on June 10, 2008, 04:01:24 PM
Hi Zeta  :)

I've never heard of Cortizone shots in the hips having any effect on saliva before. I thought cortiszone shots were just very localised. I knew I used to get them in one knee before I got a partial knee replacement but I don't remember them helping anything other than me knee until it got too bad for them to work any more.

Take care - Scottie  :)
Title: Re: I can't believe doctors sometimes...
Post by: eyeamdry on June 10, 2008, 04:10:22 PM
Quote
I knew I used to get them in one knee before I got a partial knee replacement but I don't remember them helping anything other than me knee until it got too bad for them to work any more.

Scottie, same here with my knee, cortisone shots and my partial knee replacement.   I've had shots in most of my joints, but never had (or looked) improvement otherwise.  Lucy
Title: Re: I can't believe doctors sometimes...
Post by: JannaLee on June 10, 2008, 06:58:52 PM
Diagnosed with strongly high blood factors.

Tongue looks normal.

Your doc.'s a boob.  Get rid of him.
Title: Re: I can't believe doctors sometimes...
Post by: irish on June 10, 2008, 09:14:41 PM
It is not uncommon to have prednisone given at the same time that you start the Plaquenil. The prednisone is to reduce the autoimmune assault on your body while waiting for the Plaquenil to kick in. Prednisone is not as bad as people make it out to be. Yes, it does have a lot of side effects, but it also is a miracle drug much of the time at reducing inflammation and pain and saving peoples lives.

Plaquenil is not supposed to suppress the immune system. The rheumy I saw said he would give Plaquenil to an Aids patient if they needed it. Irish ;D
Title: Re: I can't believe doctors sometimes...
Post by: Zeta on June 12, 2008, 08:10:48 PM
Thanks, Irish. That post was very encouraging. How often does plaquenil work in sjogren's patients?


As for the others who posted about getting cortisone shots. It turns out shots in the joint really do make it into the system. And if its sustained release it can last for weeks. Which is what is going on with me. I asked my dad and he's a pharmacist. He's a better person to ask than a doctor. As each day goes by my tongue gets more moisture and color. At least I have a couple of more weeks of relief. But then after that it will be back. Hopefully not with a vengeance. The downside to all of this is that my permanent bacterial vaginosis is even harder to manage. Its flaring up horribly right now. I'm having a love/hate struggle with the stuff right now. The corstisone, that is.