Author Topic: I'm new here ... someone PLEASE help me.  (Read 4049 times)

LizPetillo

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I'm new here ... someone PLEASE help me.
« on: July 02, 2010, 09:38:55 AM »
Hi.  Just got diagnosed with Sjogrens.  I've got lots of questions (and complaints about doctors!!)  Anyone care to dig in?

- does anyone else have a burning WHITE tongue?  It's not thrush.  4 tests and a biopsy say it's not.  I thought sjogrens tongues were red??  Anyone have any thoughts on this?  Doctors GUESS at GERD but I have no symptoms of it.

- is there anything special about the diet now?  I'm scared to eat things.  I've noticed that spaghetti will make things worse the next day.   Heard coffee has too much acid.  etc.  Any tips please?

- People say this is supposed to hit slowly but on April 17 I got nailed.  My legs from the knees down are numbish and don't want to work.  Brain fog.  BURNING for 3 weeks in the throat and lungs.  Fatigue so bad I can barely breathe.  Of course - burning mouth and little spit. 

- I'm VERY drug sensitive and have been prescribed plaquenil (spelling?) that I'm going to attempt tomorrow.  The dr gave me 400 mg a day ... but I'm going to take one of the pills and cut it in half and try that.  Seems everything I take .. even down to aleve ... sets off abnormal heart rhytm for me.  Anyone out there wanna' talk to me about these drugs and side effects? PLEASE!




LizPetillo

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Re: I'm new here ... someone PLEASE help me.
« Reply #1 on: July 02, 2010, 09:42:02 AM »
Oh .. I should note that I am 48 .... have glaucoma, kidney stones, heart rhytm issues, VERY drug sensitive, and I'm ticked at the doctors ... the many doctors .. who have been pushing me off, saying 'i don't know', misdiagnosing me, not listening, telling me to take anxiety meds because I was just fine (even though I'm not), etc.

Is anyone else mad at God?  Not the 'why me' thing .. but the 'why ANYONE should have this' thing. 
It's like being half alive.   

Joe S.

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Re: I'm new here ... someone PLEASE help me.
« Reply #2 on: July 02, 2010, 10:02:58 AM »
Liz, I understand your frustration. I do not know about some of the challenges that you face since I do not face them. I am sensitive to most medications, also. I went blind with the plaquenil. I suggest that you look up the medication and counter indications before you take them. I believe in supporting my immune system and have choosen to go a non-tradition route of vitamins, herbs, supplements, and non-traditional therapies like, Reflexology, Reiki, and meditation.

Before you try anything, check things out with your health care professional.
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Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
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Bernice

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Re: I'm new here ... someone PLEASE help me.
« Reply #3 on: July 02, 2010, 10:48:51 AM »
First of all, hello!

I read your post, it's an honest one, but girl friend you're in for a LOOOOONG haul, so as frustrating as it all is if you get this worked up with your doctors now you might as well plan on being one mad woman. cause you bout to add more of em to the list.

It's normal to be upset and even afraid, but girl don't let it break ya down, cause like I said it's a LOOOOONG  haul, up a LOOOONG hill. In many cases a solo trip. Some don't have anyone including doctors or family and friends to share the experience with.

I can guarantee you you gonna meet a whole lot more doctors that pass you around, misdiagnose you and some that will still think you  C R A Z Y for having all the complaints you show up with. That ain't gonna stop just because you got a DX, in truth the real fun just begins, cause now you got to face doctors that will look as you and ask you to spell that unknown thing you say you got / those off the bat you know can't help ya, but ya there so just roll with it praying all the while God help ya find that right one somewhere on this side of glory, and the countless PXs you will go through trying to find that right one that will help something and not destroy something else and pray you don't become immune to it too soon IF it works.

I say all of this not to scare you, but to say GIRL ya better hurry and make up with GOD if nobody else cause you gonna face days when He's gonna be your friend and doctor. Don't go this thing solo!

LOL! LOL! Cheer up my new sloggie buddy, it helps to make the ride a little easier to bare! >:( ;) :D ;D ;D ;D :'( :'(

Carolina

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Re: I'm new here ... someone PLEASE help me.
« Reply #4 on: July 02, 2010, 11:26:56 AM »
Dearest Liz:

Wow, I can't imagine getting hit all at once like that!  You have overnight what took me 8 years to develop.

I progressed in  Sjogren's sorta like you boil a frog.  Put him in cold water and slowly heat to boiling.

Also it sounds like you started out in flare mode big time!

You will have to work out the things that make you feel better.   I have had support from family (my son's a doctor and he's the one that suggested Cymbalta because it works so well with the pain of peripheral neuropathy).  

I have had good doctors and bad, and have been known to be a bit 'hard on the medical profession'.  But most of the time that's me being 'hyperbolic' for effect!  However...........  the medical profession wants billable procedures and quick diagnoses, so that they can go on to the next patient.

Since most of the time we each respond so variably to different treatments, and no matter what we get a handle on, something else pops up, it is just human nature for doctors to prefer someone easier to treat and send away happy!

TONGUE:   I don't know a thing about your tongue, sorry.

DIET:  I don't eat anything special, or avoid anything special.  My new internist wants me to adopt a special diet for Interstitlal Cystits (my bladder is inflammed by my Sjogren's), but there isn't a shred of research to support the effectiveness of a special diet.  And my IC is manageable with exercise and pain medications.  I don't have some of the frequent urination issues, either.

BUT, I do now have problems with m y bowels (there is nerve damage to my intestines now) so I may have to add some substances to my diet, or at least another type of medication.

I've been in Brain Fog so long I"m used to it.  I've forgotten that I don't remember anything anymore.

My problems with meds is that over the past 10 years, and with increasing rapidity I have become allergic to many many medications.

We each have to play that one by ear, Liz.

I do take Omeprazole to protect my stomach against the Aleve (which is my magic pain reliever of the moment).  And I also take a medication for my heart, which probably helps protect against the effect of Aleve on my heart.

It would help us if you listed your conditions and your medications in the profile below your signature.

Keep us Posted, Liz.

Things may settle down, I hope SO!

Kisses

Carolina
« Last Edit: July 04, 2010, 06:53:22 AM by Carolina »
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Katybarstool

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Re: I'm new here ... someone PLEASE help me.
« Reply #5 on: July 02, 2010, 12:54:39 PM »
Hi Liz

Welcome! You have had lots of good advice, so I'll just say, I hope you get some help and peace of mind soon.

God bless.
Kathyx

jstroble

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Re: I'm new here ... someone PLEASE help me.
« Reply #6 on: July 02, 2010, 04:10:04 PM »
Hi

Welcome!   I am so sorry you are having to deal with all these new problems.  There are lots of wonderful people here who will ALWAYS be here for you. 

I have something  called migratory glossitis which affects my tongue.  I don't know what the white on your tongue looks like.  I have white raised areas with normal tongue in between.  My tongue looks like a road map.  And the white seems to move around hence the migratory part.  If you google it  you will be able to find a picture which you can compare with your tongue. 

I was on Plaquinel for several years.  I had no big side effects, just some diarrhea which was helped by eating yogurt. 

I hope you do well on it.  I never  had any kind of eye problem and my eyes were checked every 6 months. 

Warm comforting and healing thoughts are being sent your way. 

Joyce

lynnmarie219

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Re: I'm new here ... someone PLEASE help me.
« Reply #7 on: July 02, 2010, 04:31:41 PM »
Hi Liz,

Just want to welcome to you Sjogrens World as well......I think you have received some good advice already....my only added advice to you would be to slow down and take one thing at a time.

When I was first diagnosed....I tried to research like crazy and solve all of my problems right away and then found out it was going to take time to figure it all out......and some things I was probably never going to understand......that medications would be a trial and error as to what would work for me....and just when I felt things were going well...something else would creep in and I may have to change the path I was taking.

I'm not trying to scare you...I just want to say we have to learn with time to slow down.....take it one day at a time....and don't forget to enjoy life in the meantime! 

LizPetillo

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Re: I'm new here ... someone PLEASE help me.
« Reply #8 on: July 04, 2010, 06:45:50 AM »
Thank you for your responses. 

@ Joe ... I'm trying accupuncture.  My third session is July 5.  The chinese herbalist/accupuncturist is nice and is trying to help, unlike many of the western doctors I've been dealing with.  Honestly ... it's not done anything for me yet.  This disease is progressing very fast.  But I was (still am??) willing to try as long as I can walk.

@Bernice ... I was a very religious person.  Until 3 months ago I thought God was my best friend.  My father.  My real father.  But parents aren't supposed to treat their children like this.  On earth, we arrest parents for causing their children pain and abandoning them.  people say to me 'everything happens for a reason' and I am guilty of saying this to so many people.  I now wish I could take it back.  You don't hurt people you love, and He is hurting me.  He could stop it.  And he isn't much of a doctor ... I prayed my heart out for weeks for a proper diagnosis and drugs I can take.  Instead I get wrong diagnosis after wrong diagnosis AND drugs a series of drugs that I have bad reactions to. 

@ Carolina  ... Aleve ... sets off my irregular heart beat.  Dangitall ... I react to everything.  And now I can't even take a vitamin complex without breaking out and itching. 

Migratory Glossitis .. thanks .. I'll look that up. 

 

LizPetillo

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Re: I'm new here ... someone PLEASE help me.
« Reply #9 on: July 04, 2010, 06:51:37 AM »
I don't understand what a 'flair' is or how long this is supposed to last.  It's been since Apr 17.  My mouth is swollen inside, so are my lips.  Swallowing is hard .. sometimes almost can't.  the legs from the knees down are numblish and it's hard to walk.  I'm dizzy sometimes now.  The lights look strange .. like a camera flash on freeze with kinda a halo or something ...

This is going to finish off my glaucoma .. either this disease or the medicine.  I can't take glaucoma meds because I have cardiac reactions to them all.  drats. 

It's hard to breathe.  It hurts to breathe.  Without the prednezone I wheeze and burn.  It feels like pneuomina inside but dry.  All the doctors say "i don't know .. go see ______ (someone else). 

The big thing is the tongue and the throat swelling.  It's gotta be something other than Sjogrens, right?  Sjogrens doesn't have a white tongue that swells and unswells .. does it?  I've had MRI (without contrast because I have cardiac problems with it) and they didn't see anything.

If I don't take the prednezone my tongue and glands swell .. and mymouth fills with what seems like watery bacteria or something.    Then my tongue gets infected.  VERY strange.

Gerty

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Re: I'm new here ... someone PLEASE help me.
« Reply #10 on: July 04, 2010, 08:28:59 PM »
Hello Liz Im new as well you sort of sound like me but don't this is what I posted and this is how I feel,
I was diagnosed with sjogren's about 20 mths ago at that time I felt like I had spoon full of sand in my mouth more annoying then anything else not long after that I got a Metallic taste in my mouth and a feeling of biting into a pepper corn that stayed there until Christmas day last year my tongue felt like it was burning and was very painful it settled to some what but never went 100% both the taste and now a very mild burn was still there until about 2 weeks ago I had like another flare if there is flares in Sjogrens I guess you could say it hung around for a week it would be good in the morning and slowly get worse during the day time and by dinner time my mouth is so sore I find it hard to eat I have gashes out of the sides and top of my tongue and Raised red bumps at the back of my tongue and this 2nd time it has settled but stayed worse then it did the first time I have lupus S.L.E and fibromyalgia as well as the Sjogren's my lupus has been in remission for about 10 years now I am 48 year old women. I hope I'm making sense

Nic Alex

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Re: I'm new here ... someone PLEASE help me.
« Reply #11 on: July 04, 2010, 08:33:35 PM »
I know how you feel.  I was diagnosed in February 2010.  Initially I found the Sjogrens Foundation website to be a very helpful introduction. I went to a Sjogrens support group meeting where everyone discussed what they were taking and I was not on anything and had no clue but oh did I learn fast.  I thought my symptoms were bad then, but little did I know.  I suggest you change your diet and leave out any food with acidity(spaghetti, pizza, ketchup, oranges).  I have had my bouts with GERD. Get plenty of rest.  Incorporate exercise into your day.  Stay stress free and take one day at a time. Please check with your eye doctor before using plaquenil, but other than that I say go for it.

colleen

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Re: I'm new here ... someone PLEASE help me.
« Reply #12 on: July 15, 2010, 01:32:13 AM »
Hi Liz ,

You will find alot of support here....we are all in this together. As for the tounge it could be Geographical tounge. you may want to research it on the net.

take care Colleen

LizPetillo

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Re: I'm new here ... someone PLEASE help me.
« Reply #13 on: July 16, 2010, 11:01:39 AM »
Checked geographic tongue .. not it. 
Now it's got all these big red sore bumps on the back and sides.
Some dark spots inside the bumps.
And it's still swelling/unswelling.
The plaquenil maybe? 
No one seems to know.