[Kiya]

((((((((Cakeladie, Jan, all))))))))))))))

sooo.... I have another dr apnt this week... this is with a doc I tried to change over to, but she has a male scribe who sits through the whole apnt and that often renders me speechless - that whole ptsd, dissociation thing. yay.
but I want another opinion on my tonsils.... (for those who are easily grossed out, stop reading now )
last chance
ok so, due to chronic bronchitis (since I was 3), my tonsils are really enlarged and full of pockets... these pockets, that I thought were infected and full of puss, are actually full of food! @_@
warned ya
So I am supposed to keep them clear of food.... oh ok. I've tried everything. And my swallowing is bad (I'm getting de ja vu of de ja vu of writing this.... woah). my other dr said there's nothing wrong with my throat, that it's something like "gloubious hystericus" but had me do a barium swallow xray test anyway... proving there's nothing wrong with my throat.
except that I choke on water, get food and pills stuck in my throat, and that there is still food particles in my throat the next day (yuck, I know).
Meanwhile, there's now food in my tonsils daily. I can't get it out. THey say at 38 i'm too old to have my tonsils out - but honestly, if they're in there putrefying, what am I supposed to do? wait for some horrid infection ten years or so down the line when it is going to be emergency surgery, and where I may get some secondary infection from?
I don't like it. I don't know what else to do. And I will have to write this down in case I can't speak in front of the male scribe. That will be Thursday. Pocket riders accepted.
And I SO don't want it just "chalked up to fibro". Because honestly, not EVERYTHING is fibro... just like not EVERYTHING was just in my head before the "existence" of fibro.
End rant

[lizardlady]

Kiya, count me in as a pocket rider.

[January]

((((( Kiya )))))

Count me in as a pocket rider, too. I don't blame you for not wanting to speak in front of the scribe. That's one of the strangest things I've heard of.

I hope so much they'll go ahead and take your tonsils out for you. You're right, everything can't be fibro, although sometimes it seems like that.

I hope so much that they find a sensible solution for you and that the Dr. really listens to you or reads what you have to say and takes it to heart. Please let us know what happens.

[cakeladie]

((((((Kiya))))))) Can you ask to go to a specialist like and ENT doctor? Here is the reason, I have lupus, RA, Fibro, pulmonary fibrous and a few other issues. My pulmonary doctor could not get my coughing under control so he wanted to send me to an ENT doctor. I thought his turban was on to tight but went anyway.

That doctor in his office but a scoop in nose and down my throat and found I havee Laryngopharyngeal Reflux or LPR. It has to do with something in your vocal cords etc. One pill a day and most of my coughing is gone weirdest thing ever.

I'll be there for you to. Hang in there

[January]

I thought his turban was on to tight but went anyway.

My hat must be invisible, but that must be what's wrong with me!

[cakeladie]

who would have thought that something to do with your vocal cords etc would make you cough. I was at my wits end so I went. Since I have seen this doctor before I was ok with going. He's not my favorite doctor but he does get the job done.

It's sad that once dx with fibro all doctors want to do is say everything is because of the fibro.

[January]

(((((Cakeladie)))))

I'm so sorry everyone thinks your problems are because of fibro. I wish you were treated with the respect and kindness you so assuredly deserve.

[cakeladie]

They either think fibro or the lupus or the RA. It's sad because I have refused to go to the ER because they usually blame it on one of the 3 and say you just have to deal with it. With lupus I have organ damage which really sucks. But I have a team of doctors and most of the time they talk but they don't get it when I say I don't want to go to the ER. You sit there and wait for ever and they really don't do anything. Sad.

[Kiya]

thanks... wow..yike! cakeladie
I saw the ENT last year or two ago... didn't like him at all... he scared me on purpose. He found nothing... maybe I need a second opinion there, too.

Odd thing is, I've been coughing daily since 2005. I had bronchitis (again) and then was deployed to New Orleans in December to assist Hurricane Katrina victims, where we all got "the Katrina Crud", but I've been coughing ever since. "no reasons found".
but thank you for the suggestion.
I feel like I inhabit a body that is not mine - not the one other people see. How can I have so many symptoms and yet dr's see nothing? My pnurse assures me I am not a hypochondriac, but what else am I to conclude?

Originally Posted by cakeladie

((((((Kiya))))))) Can you ask to go to a specialist like and ENT doctor? Here is the reason, I have lupus, RA, Fibro, pulmonary fibrous and a few other issues. My pulmonary doctor could not get my coughing under control so he wanted to send me to an ENT doctor. I thought his turban was on to tight but went anyway.

That doctor in his office but a scoop in nose and down my throat and found I havee Laryngopharyngeal Reflux or LPR. It has to do with something in your vocal cords etc. One pill a day and most of my coughing is gone weirdest thing ever.

I'll be there for you to. Hang in there

[Kiya]

thanks Lizard Lady and Jan... I will. I already forgot I hate being there with the scribe.... sooooo weird. and she doesn't see people in the exam room (that's only where vitals are taken by the nurse, and the scribe asks you why you're there and takes notes and lets you know when the dr is ready for you). She sees people in her office, across a desk, looking at a computer and hardly looks up. I just don't get it.

Originally Posted by January

((((( Kiya )))))

Count me in as a pocket rider, too. I don't blame you for not wanting to speak in front of the scribe. That's one of the strangest things I've heard of.

I hope so much they'll go ahead and take your tonsils out for you. You're right, everything can't be fibro, although sometimes it seems like that.

I hope so much that they find a sensible solution for you and that the Dr. really listens to you or reads what you have to say and takes it to heart. Please let us know what happens.

[Kiya]

right?? sit in the lobby for 6 hours (with everyone who has the flu, which is great for our immune systems), only for the docs to look at you for maybe 2 hours, take blood tests or an image, say they don't know but to come back if things get worse and to check in with your regular doc within 36 hours.

Originally Posted by cakeladie

They either think fibro or the lupus or the RA. It's sad because I have refused to go to the ER because they usually blame it on one of the 3 and say you just have to deal with it. With lupus I have organ damage which really sucks. But I have a team of doctors and most of the time they talk but they don't get it when I say I don't want to go to the ER. You sit there and wait for ever and they really don't do anything. Sad.

[cakeladie]

That's the the thing with AI's (autoimmune diseases). You can fill like crap but they can't find anything wrong, test wise. It can take years to get a lupus dx since there are between 60-80 different AI's that mimic lupus.

Look into seeing another ENT. My ENT is a jerk no bed side manners but he knows his stuff. When I gave him the note from my pulmonary doctor of what was going on and how he had tried to treat it and failed he knew kinda what to look for.

I was not happy with the numbing spray he used in my nose and then the tube he put in my nose and down my throat. It did not hurt but if I had known he was going to do that right then I would have brought someone with me.

Try to take it easy and not stress about your up coming appointment because that will cause your fibro to act up and you do not need that.

[berthegel]

Hello have not been diagnosed with fybro yet but have been referred to a neurologist.

For years I've had fatigue/fevers/chills/neck pain, hip pain, pain that feels like its in my bones, restless legs, cognitive probs, chronic insomnia , have existing anxiety/depression / increasing and worsen eye probs, burning , maybe labrynthitis , and for the last year or more I've started with tension around shoulders neck as if all my stomach torso is flexed upwards .
Constant saliva , and sometimes feels like my brain is being squeezed .
And a constant tension headache .

Years ago I thought I may have polymalgia rhuematica thenGCA because I started about 4 years ago to have carpal tunnel or something ( because I've read carpal tunnel can be all over the body legs back , which worsens with PC . and carpal can be a complication of polymalgia rhuematica .
And I also started with jaw pain , ear lobe pain .

Do these things chime with any of you ?

[January]

Hi Berthegel,

I don't have restless legs, but I can certainly understand the pain, fevers and chills. That sounds all too familiar.

I sure hope you get some answers soon. It's almost a relief when the rheumy tells you that you have fibro. Finally, someone listened and all the symptoms you've been having are real.

Welcome to the thread!

[Bubbles&Buttercup]

I'm about to apply for a rental house which I absolutely can't afford. Admittedly I can't afford anything, but I need a place so I'm just applying and I guess I'll deal with the money issue later.

I thought the unit was pretty good but my friend asked me some questions about it and I have no idea! I should have taken someone with me who would have noticed things and remembered. I'm starting to freak out about everything.

Really wishing I could just go work and earn good money and be normal.

[cakeladie]

Can you ask to see it again and then bring someone with you?

[Kiya]

doc tomorrow on the tonsils.... which are now suddenly free and clear of debris for the first time in months.... which is great.... but now the reason for my going is gone. *rolls eyes*
Oh shoot - I was going to write out for her why I am there.... guess i'd better get on that...
hugs to you all!

[Bubbles&Buttercup]

Originally Posted by cakeladie

Can you ask to see it again and then bring someone with you?

Someone got it before I did, but I'm seeing another couple units tomorrow and my mum is going to come with me.

[cakeladie]

good luck Kiya we a thinking about you

[Kiya]

So I just got back from the doctor thank you everyone for being pocket writers I was getting really nervous.
The verdict is that I have tonsil stones which I didn't even know was a thing.
She gave me a recommendation to an ENT that she knows that I will call soon. She sends all her patients there and really likes him. She said he would give me an honest opinion about either having of the tonsils out or how to care for them concerning the tonsil stones.
Thanks!!!!

[~Christina]

I known numerous people that have gotten the stones , Painful things ! I hope a solution can be found and your feeling better fast

[cakeladie]

Christina how are you feeling?

[Kiya]

I have the ENT apnt the fist week in August.

How is everyone?

I don't know why, but some how I forget just how much food can hurt us fibro folk. Ate pizza yesterday (from the grocery store; "fresh") but it always HURTS SO DAMN MUCH the next day. WHy can't I remember that? I need to remember that. I only just managed to roll out of bed, get to take my meds, and sit down at the computer to visit PC because moving more than that is beyond me right now. It is another beautiful day out -maybe the last will have for a while (it's rare in May to have nice days) and I don't feel like I can participate in it. I'd go back to bed, but that hurts too much, too. :/

Hoping everyone has as good a day as is possible. Sending support out to you all!

[January]

Oh Kiya, I hope you feel better! I am so sorry you are so sick. Both of us aren't doing very well today but it sounds like you have the short end of the stick. Please take good care of yourself.

Christina, I hope you're feeling well and I hope everyone else is doing well, too.

[~Christina]

Hi Ladies,

My Pain is just ridiculous! But I feel like I have finally been able to get in front of it.. that always helps.

I am almost ready to take a camping trip to the lake !

Hope everyone is taking care of themselves