Re: Interesting Unusual Atypical

[Guest guest]

Dear ,

I feel for you and I know how you feel. There's

nothing more maddening than when a doctor tells you

your labs are okay and expects you to be glad you

don't have a disease all of a sudden. You want to

say, " Nothing wrong with me? Silly me. What was I

thinking? I must be just fine, then, and this agony

is a figment of my imagination. Thanks for setting me

straight. Really, I was just seeing multiple doctors

because I'm so taken with the nifty magazines you guys

keep in your waiting rooms. Where else can you find a

magazine about diabetes from the seventies? "

Sheeeeesh! I got sick of doctors getting the facts

about my disease screwed up so I started typing up a

sheet that told as briefly as possible what was wrong

and what I'd tried that didn't work already. It ticks

doctors off, and one even said, " I should charge you a

couple of hundred dollars for making me read this "

(and it was only one page long) but at least they

can't come back and say, " Huh? You didn't tell me you

stiff. " after I'd told them a dozen times that I can

barely move when I first wake up and get stiff even if

I sit for 10 minutes.

I pray that you'll at least be able to find some

effective treatment, even if the doctors can't give

you a distinct diagnosis.

God bless!

laura

--- tandarat <mflinder@...> wrote:

> DANG am I getting sick of those three words! They

> seem to come out

> of every doctor's mouth I encounter. If they don't

> figure this out

> soon, I may just have to donate my body to science

> now and get it

> over with. If I was a horse, they'd be taking me

> behind the

> woodshed and calling the renderer, let me tell you.

>

> I'm getting a little tired of the sympathetic nods,

> the shaking

> heads and clucking tongues, too. I don't want pity,

> I want a damn

> diagnosis, and I want treatment. Sorry about the

> language,

> but...but...damn!

>

> Yesterday I had a seizure while I was sitting in the

> the room

> waiting for my rheumatologist. He came in at the

> very end (I was

> there for probably 45 minutes, and the headache that

> preceded it

> began when I went for my blood pressure, weight,

> etc. So, this

> seizure lasted about 45 minutes (better than the 2-3

> hours the first

> one lasted). I was still pretty out of it when the

> doctor finally

> came in. I told him I had just had a seizure, and

> he patted me on

> the back, asked if I was ok, and then proceeded to

> tell me the " good

> news " ...that essentially there was nothing wrong

> with me! EXCUSE

> ME? He said no lupus (my ANA titer was " too low "

> and " wrong

> pattern " which I know is bull, since I've spoken to

> a few people on

> the lupus board who have the same pattern at the

> same titer or

> close), my RF wasn't high enough, and my sed rate

> wasn't high

> enough. My dsDNA was coming back positive but well

> within the

> normal range. OK. I try to explain to him that I

> have been on

> Plaquenil for 5 months, now, and that before I began

> it my RF was

> well over 100, and getting higher each test, my

> LOWEST sed rate was

> somewhere around 56, and often was quite a bit

> higher, and my dsDNA

> was elevated (borderline high). I asked if the

> plaquenil can lower

> these rates. He refused to answer, pointing again

> to the current

> lab work. I figured I may not be making myself

> clear (the seizures

> affect my thinking and speech for quite some time),

> and so tried a

> different approach, also hoping it wasn't so

> confrontational, and

> that maybe it would get me some answers if this

> ISN'T what everyone

> ELSE thinks it may be. I ask if it isn't lupus,

> what could it be.

> He tells me it could very well be a viral infection.

> I tell him my

> spinal tap was clear...no sign of infection at all.

> He said that

> maybe they only checked for a bacterial infection (I

> know she

> checked for everything). I then ask how it could

> last for 2

> freakin' years. He then says, " Well, this all

> started just a couple

> of months ago, right? " ARRRRRGGGGGHHHHH!. NO. It

> started after my

> daughter was born. He then says that the kidney

> failure has nothing

> to do with my current neurological problems. YES.

> I KNOW that.

> But that is when the fatigue and joint pain

> started...first mild,

> and has progressively got worse. And, yes, the

> neuro. problems

> started in the last month, and the yeast

> infections/thrush began a

> few weeks before that, and the hair loss a few weeks

> before that.

> HOWEVER, the original complaints, combined with some

> other problems

> (hearing loss, vision problems, etc.) have been

> going on for a long

> time, some as long as 2 years. So, he drew even

> MORE blood (I

> offered to just let them bleed me out completely,

> and then they can

> keep it in a fridge and take out what they need when

> they feel like

> it...I wonder if they are DRINKING the stuff ),

> had me pee in a

> cup, gave me $400 worth of vitamins and supplements

> (!), and told me

> to come back in 3 weeks.

>

> I am SO getting tired of all this. I try to keep a

> sense of humor

> about this, but this is getting ridiculous. I have

> more doctors now

> than I knew existed, and no one knows what is going

> on. I'm not

> allowed to drive, I'm not allowed to work, my mom

> and husband hate

> each other (to their credit they have been getting

> along

> surprisingly well this past week), my mother in law

> whines that she

> has to come and help once in awhile to give my mom a

> break, I can't

> even go out to pet my horses because I become

> violently ill if I'm

> in full sun for more than a few minutes, and going

> out to the store

> wipes me out completely. I'm on meds to prevent

> seizures (for what

> good that does), bring down my CSF pressure, slow my

> heartrate

> (which went sky high this last seizure and wouldn't

> come down even

> with the beta blockers for about 15 hours), plus the

> plaquenil. At

> least I'm off the prednisone, but when I stopped

> that, the rest of

> my hair fell out and the joint pain came back. Oh,

> the joys of

> being me.

>

> And yes, I admit I cried last night. The seizures

> also affect my

> mood, and I finally just lost it last night. Of

> course, my husband

> waking me up to complain about our financial

> situation didn't help,

> but I probably needed it, anyway. And today I'm

> just cranky as all

> get-out. Oh well...my family will have to deal, and

> I'll get over

> it. I just needed to vent to some people who'd

> understand, and who

> I didn't need to speak to. My new " trick " is to

> start shaking

> uncontrollably when I try to speak any louder than a

> whisper. I'm

> SO much fun to be around.

>

>

>

>

>

__________________________________________________

[Guest guest]

Dear ,

I feel for you and I know how you feel. There's

nothing more maddening than when a doctor tells you

your labs are okay and expects you to be glad you

don't have a disease all of a sudden. You want to

say, " Nothing wrong with me? Silly me. What was I

thinking? I must be just fine, then, and this agony

is a figment of my imagination. Thanks for setting me

straight. Really, I was just seeing multiple doctors

because I'm so taken with the nifty magazines you guys

keep in your waiting rooms. Where else can you find a

magazine about diabetes from the seventies? "

Sheeeeesh! I got sick of doctors getting the facts

about my disease screwed up so I started typing up a

sheet that told as briefly as possible what was wrong

and what I'd tried that didn't work already. It ticks

doctors off, and one even said, " I should charge you a

couple of hundred dollars for making me read this "

(and it was only one page long) but at least they

can't come back and say, " Huh? You didn't tell me you

stiff. " after I'd told them a dozen times that I can

barely move when I first wake up and get stiff even if

I sit for 10 minutes.

I pray that you'll at least be able to find some

effective treatment, even if the doctors can't give

you a distinct diagnosis.

God bless!

laura

--- tandarat <mflinder@...> wrote:

> DANG am I getting sick of those three words! They

> seem to come out

> of every doctor's mouth I encounter. If they don't

> figure this out

> soon, I may just have to donate my body to science

> now and get it

> over with. If I was a horse, they'd be taking me

> behind the

> woodshed and calling the renderer, let me tell you.

>

> I'm getting a little tired of the sympathetic nods,

> the shaking

> heads and clucking tongues, too. I don't want pity,

> I want a damn

> diagnosis, and I want treatment. Sorry about the

> language,

> but...but...damn!

>

> Yesterday I had a seizure while I was sitting in the

> the room

> waiting for my rheumatologist. He came in at the

> very end (I was

> there for probably 45 minutes, and the headache that

> preceded it

> began when I went for my blood pressure, weight,

> etc. So, this

> seizure lasted about 45 minutes (better than the 2-3

> hours the first

> one lasted). I was still pretty out of it when the

> doctor finally

> came in. I told him I had just had a seizure, and

> he patted me on

> the back, asked if I was ok, and then proceeded to

> tell me the " good

> news " ...that essentially there was nothing wrong

> with me! EXCUSE

> ME? He said no lupus (my ANA titer was " too low "

> and " wrong

> pattern " which I know is bull, since I've spoken to

> a few people on

> the lupus board who have the same pattern at the

> same titer or

> close), my RF wasn't high enough, and my sed rate

> wasn't high

> enough. My dsDNA was coming back positive but well

> within the

> normal range. OK. I try to explain to him that I

> have been on

> Plaquenil for 5 months, now, and that before I began

> it my RF was

> well over 100, and getting higher each test, my

> LOWEST sed rate was

> somewhere around 56, and often was quite a bit

> higher, and my dsDNA

> was elevated (borderline high). I asked if the

> plaquenil can lower

> these rates. He refused to answer, pointing again

> to the current

> lab work. I figured I may not be making myself

> clear (the seizures

> affect my thinking and speech for quite some time),

> and so tried a

> different approach, also hoping it wasn't so

> confrontational, and

> that maybe it would get me some answers if this

> ISN'T what everyone

> ELSE thinks it may be. I ask if it isn't lupus,

> what could it be.

> He tells me it could very well be a viral infection.

> I tell him my

> spinal tap was clear...no sign of infection at all.

> He said that

> maybe they only checked for a bacterial infection (I

> know she

> checked for everything). I then ask how it could

> last for 2

> freakin' years. He then says, " Well, this all

> started just a couple

> of months ago, right? " ARRRRRGGGGGHHHHH!. NO. It

> started after my

> daughter was born. He then says that the kidney

> failure has nothing

> to do with my current neurological problems. YES.

> I KNOW that.

> But that is when the fatigue and joint pain

> started...first mild,

> and has progressively got worse. And, yes, the

> neuro. problems

> started in the last month, and the yeast

> infections/thrush began a

> few weeks before that, and the hair loss a few weeks

> before that.

> HOWEVER, the original complaints, combined with some

> other problems

> (hearing loss, vision problems, etc.) have been

> going on for a long

> time, some as long as 2 years. So, he drew even

> MORE blood (I

> offered to just let them bleed me out completely,

> and then they can

> keep it in a fridge and take out what they need when

> they feel like

> it...I wonder if they are DRINKING the stuff ),

> had me pee in a

> cup, gave me $400 worth of vitamins and supplements

> (!), and told me

> to come back in 3 weeks.

>

> I am SO getting tired of all this. I try to keep a

> sense of humor

> about this, but this is getting ridiculous. I have

> more doctors now

> than I knew existed, and no one knows what is going

> on. I'm not

> allowed to drive, I'm not allowed to work, my mom

> and husband hate

> each other (to their credit they have been getting

> along

> surprisingly well this past week), my mother in law

> whines that she

> has to come and help once in awhile to give my mom a

> break, I can't

> even go out to pet my horses because I become

> violently ill if I'm

> in full sun for more than a few minutes, and going

> out to the store

> wipes me out completely. I'm on meds to prevent

> seizures (for what

> good that does), bring down my CSF pressure, slow my

> heartrate

> (which went sky high this last seizure and wouldn't

> come down even

> with the beta blockers for about 15 hours), plus the

> plaquenil. At

> least I'm off the prednisone, but when I stopped

> that, the rest of

> my hair fell out and the joint pain came back. Oh,

> the joys of

> being me.

>

> And yes, I admit I cried last night. The seizures

> also affect my

> mood, and I finally just lost it last night. Of

> course, my husband

> waking me up to complain about our financial

> situation didn't help,

> but I probably needed it, anyway. And today I'm

> just cranky as all

> get-out. Oh well...my family will have to deal, and

> I'll get over

> it. I just needed to vent to some people who'd

> understand, and who

> I didn't need to speak to. My new " trick " is to

> start shaking

> uncontrollably when I try to speak any louder than a

> whisper. I'm

> SO much fun to be around.

>

>

>

>

>

__________________________________________________