Re: Grrrrrrrrrr!!!!!!!!!!!! Another wasted 2 hours

[Guest guest]

Raving Vents R Us!

This IS the Complaint Department!

Honey, I hear you loud and clear! You have every right to be seething, boiling mad!

Above all, I say - BE PERSISTENT! Get hold of your own medical records, if necessary, and go through them with a fine-toothed comb and underline all pertinent details, then take it to head of the neurology department or something. Maybe you should mail or fax all of it to Dr. Baughman in Cinncinati - ask him to evaluate the records and give an opinion about your diagnosis... He was fairly prompt in answering an e.mail when I sent him one!

Hang in there! I'm sending you strength and Lots of Love!

L & L,

Jeri

[Guest guest]

Excellent rant, Toni! I'd give it a 9.2. Had to take off points for no

caps & only a few cuss words. But overall, creativity and technical very

impressive! Keep training! Judge Rose

Original Message:

-----------------

From: Toni tonijo@...

Date: Mon, 19 Jul 2004 14:22:04 -0000

To: Neurosarcoidosis

Subject: Grrrrrrrrrr!!!!!!!!!!!! Another wasted 2 hours

Hi All,

I just can't believe these bloody dr's anymore, today was just about the

last straw. I had another rheumy appt at 8:50am this morning and after

waiting for 2 hours to see the dr, I find that I didn't get to see my

regular rheumy again today but another offsider or whatever he was. I was

in there for a total of about 10 to 15 mins, treated me with total

insignificance, couldn't wait to get me out the door. It appears VERY

obvious to me that my regular rheumatologist has palmed me off. I laid on

him the problems I'm having with social security disability because none of

them will commit to the neurosarc diagnosis even though that's what they

are treating me for and was their initial working diagnosis. He said there

hasn't been any clinical evidence to make a definite diagnosis only the

symptoms that I state I am having. So it was a come back in three months

and see how you're going. I said I had an appt with the immunologist in 3

weeks and he said well just wait and see what he has to say. My pain and

fatigue has worsened over the last 3 weeks, my cough is still there, not

any better and my GP has increased my prednisone from 30 to 40mg. After

telling this quack everything I could in the few minutes I gathered he was

willing to spare, he didn't offer me ANYTHING, not another chest MRI, no

blood work, NO NOTHING. He said why don't you try going back to work for

an hour a day.......I just couldn't believe it. Apart from the fact that I

can barely stay awake for a full on concentrated hour, by the time I got

ready for work, showered and dressed, got the bus to work, I'd have to turn

around and come home again. Bloody hell, what is wrong with these drs. I

told him about these mini seizures or switching off episodes I have where I

just stare into space until I I finally get back with it again on my own or

someone is calling me back to the real world, my slurred speech, the little

electric shocks I have just as I am falling asleep that jolt me wide awake

again so I hardly get any sleep at all. He says, well I haven't noticed

any slurring speech since you've been talking to me. Honestly I could have

punched him in the face. My hubby just sat there shaking his head. Just

before the dr was ushering us out, he just said come on darl, let's get out

of here. He doesn't know what he's talking about. So I left starting to

wonder if maybe, just maybe they are right, is it in my head, but then it

can't be, I have the symptoms, I have the raised blood levels, the out of

control sugar levels, the low thyroid problems, the shakes, the imbalance,

the insomnia, the pain, the fatigue, the intermittent ringing ears, slurred

speech, nerve and muscle spasms, particularly in my face following the

bells palsy, the piercing pain in my bones, etc etc etc. you all know all

about it. What am I supposed to do......just hang tough for yet another

month to see the immunologist and go through ALL this again.... I've

really had it, really really had it with all these dr's who think they know

all about you and your body after they've seen you for all of five minutes.

Thanks for the vent and rave.....hope everyone else is doing a lot better

Toni

Brisbane, OZ

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.718 / Virus Database: 474 - Release Date: 9/07/2004

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

www.mirc.com download the program, follow instructions find Server Dalnet

then type in /join #NSChat. If you need help please notify at

topdat@... or topdat on yahoo messenger.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Toni, I am so sorry that you, or in fact, anyone, has to go through a crap visit like that. I wish I had more comfort and support for you but alot of my doctor visits are about the same as yours. gaggle of idiots they all are. Some of my doctors disagree with what other of my doctors say. I think it's the multi-organ complexity of this disease that throws them for a loop. Because they don't know what to do...it's easier to make you think most of its in your mind... I've had doctors outright lie to my face and then I found out that they had botched some of my treatment up and put the blame on me. Keeping some kindof daily symptom journal may help but then they'd probably say you were focusing on it too much. Personally, I have to wait till it acts up at its worst to get proper attention and the rest of the time I 'cope' the best I can with my meds being what they are. But you are at a tight spot when it comes

to disability. The only thing I can think of at all is to see a lawyer...one who deals with disability payments....and see if he can help you. The lucky ones who have found a good doctor still face alot of problems with roller-coaster symptoms. But it is nice to have a doctor who sympathizes and understands this disease and who doesn't look at you like you're making it all up. Imagine the doc's face on a pillow and punch it...over and over and over again. bloody loon he is. Most of us have gone through very similar and even worse encounters with docs though it probably doesn't help you feel much better, does it?....loads of hugs S. known sometimes as the bitchy princessToni wrote:

Hi All,I just can't believe these bloody dr's anymore, today was just about the last straw. I had another rheumy appt at 8:50am this morning and after waiting for 2 hours to see the dr, I find that I didn't get to see my regular rheumy again today but another offsider or whatever he was. I was in there for a total of about 10 to 15 mins, treated me with total insignificance, couldn't wait to get me out the door. It appears VERY obvious to me that my regular rheumatologist has palmed me off. I laid on him the problems I'm having with social security disability because none of them will commit to the neurosarc diagnosis even though that's what they are treating me for and was their initial working diagnosis. He said there hasn't been any clinical evidence to make a definite diagnosis only the symptoms

that I state I am having. So it was a come back in three months and see how you're going. I said I had an appt with the immunologist in 3 weeks and he said well just wait and see what he has to say. My pain and fatigue has worsened over the last 3 weeks, my cough is still there, not any better and my GP has increased my prednisone from 30 to 40mg. After telling this quack everything I could in the few minutes I gathered he was willing to spare, he didn't offer me ANYTHING, not another chest MRI, no blood work, NO NOTHING. He said why don't you try going back to work for an hour a day.......I just couldn't believe it. Apart from the fact that I can barely stay awake for a full on concentrated hour, by the time I got ready for work, showered and dressed, got the bus to work, I'd have to turn around and come home again. Bloody hell, what is wrong with these drs. I told him about these mini

seizures or switching off episodes I have where I just stare into space until I I finally get back with it again on my own or someone is calling me back to the real world, my slurred speech, the little electric shocks I have just as I am falling asleep that jolt me wide awake again so I hardly get any sleep at all. He says, well I haven't noticed any slurring speech since you've been talking to me. Honestly I could have punched him in the face. My hubby just sat there shaking his head. Just before the dr was ushering us out, he just said come on darl, let's get out of here. He doesn't know what he's talking about. So I left starting to wonder if maybe, just maybe they are right, is it in my head, but then it can't be, I have the symptoms, I have the raised blood levels, the out of control sugar levels, the low thyroid problems, the shakes, the imbalance, the insomnia, the pain, the fatigue, the

intermittent ringing ears, slurred speech, nerve and muscle spasms, particularly in my face following the bells palsy, the piercing pain in my bones, etc etc etc. you all know all about it. What am I supposed to do......just hang tough for yet another month to see the immunologist and go through ALL this again.... I've really had it, really really had it with all these dr's who think they know all about you and your body after they've seen you for all of five minutes.Thanks for the vent and rave.....hope everyone else is doing a lot betterToniBrisbane, OZ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.718 / Virus Database: 474 - Release Date: 9/07/2004~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays

10pm EST USAwww.mirc.com download the program, follow instructions find Server Dalnet then type in /join #NSChat. If you need help please notify at topdat@... or topdat on yahoo messenger.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Toni.

First of all, darling, sweet girl, I am going to astral project this

evening to leave the durable sparkling purple bootstraps. Your story

of being humiliated by a dismissive and ignorant specialist is

soooooooooo common amongst us. I was lucky the first year (just about

nine years ago) when I was ill. First, the neurologist assigned to me

in the ER was pretty exhaustive in trying to find out what was wrong --

I was also very, very lucky that from the first my then fiance who was

at that time a full time chiropractor working in the biggest practice

in the state was 100 percent concerned and never has in all this time

suggested my symptoms were anything but very real and very frightening.

Right up the day of my " Sarc bullet " and even went so far as to yell

at me for trying to push through the things that were happening, as I

always did whenever some idiot specialist suggested my symptoms were

stress related.

On the sly, I made my own appointment with a shrink after a

psychiatrist friend of minewas adament that I convince myself that my

symptoms were serious and in immediate need of treatment. After three

visits he told me I didn't need his services and that he was completely

convinced my symptoms were organic. When I told my neuro about it he

was pissed that I had wasted my time. He wasn't at all sure that my

illness looked like MS but it was the closest he could find. He put me

on tegretol (I had developed trigeminal neuralgia and stocking and

glove pins and needles). He also did a few burst treatments of

prednisone but was a bit hesitant in case it was some kind of virus

which would actually be made worse by prednisone. The most helpful

thing he did was to advise me to find legal representation and file for

SSDI right away. He could see the nosedive I was taking, expecially

with my memory and with balance and fatigue.

Then this pretty good neuro left town. He also left me with no

referral, as he had no respect for any of the neuros in town ( and

Indianapolis is pretty large). I found my second neuro through the MS

swim group at the JCC. The majority of her patients had MS and she was

on the board of the Indiana MS Society. Also, by chance, she never

doubted the severity and quick onset of my smptoms because the man who

shared two western floors of my townhouse was also her patient. He and

her wife had seen me leave one day early in my treatment at that

office. The had confessed their extreme concern and perplexity over

what seemed to be an overnight change from outgoing, athletic and a

gardening fanatic (our upstairs windows looked down into the others'

fenced in garden patios -- gardening had been a great passion, but I

had not harvested any of my vegetables and had yet (it was February) to

prune back my flowerbeds.

I had already made reservations through my first neuro at the Mayo

Clinic, and although my new neuro was confident they could not find

anything she hadn't, I felt obligated to go as my friends at my school

district were paying for the trip plus expenses. One very STUPID rheumy

suggested I had hysteria and quoted the mass hysteria of women during

the victorian era (Actually, those real fits of fainting were due to

eversotight corsets -- the big oaf). I agreed , rather, insisted on

seeing a psychiatrist. I saw him all five weekdays I was there and he

ruled out completely and psychiatric explanation. However, the

official report from Mayo has the suggestion from the rheumy earlier in

the letter than the psychiatrist. I can't tell you the fodder this had

given unfit and callous docs since, even though I make them read the

entire report and they seem to back off. Still, I wanted hope by this

time that things might be easy to fix. I saw another psychiatrist. On

the second day I was dismissed. I saw yet another who didn't even

examine me. He said if I was fool enough to go to another psychiatrist

I really MUST be crazy.

Oh, sweet, sweet, Toni. Can you believe that when that neuro retired

and I was referred to the new head of neurology, he had come from all

places -mayo's. And the kicker wasn't that I had too few symptoms but

that I had too many at a time. That and that my remissions were

shorter than my relapses, and I could no longer be labelled as

relapsing/remitting MS. He went ahead and dx'd me as secondary

progressive and took me off the Avonex, as it seemed not to be working.

He also agreed not to give me anymore medrol packs or solumedrol

unless I once again couldn't walk (that had happened in 97-98) or if I

went completely blind. That was the single worst mistake I have made

as a result of having a bonehead doctor. One year after I went off all

prednisone they found the sarc in my lungs. Turns out my second neuro

(the good one) had been testing my ACE level all along.

When my third neuro found out about the sarc lung exray he put me

inpatient for a week. It seems that my vanity (the only reason for my

laying off the pred) had really bitten me in the but. Just a month

after I was released I developed seconday sjogren's or heresford's I

think it's called. I started these horrible night sweats, terribly dry

mouth and eyes, totally screwed up sense of taste and on and on.

When I finally was referred to a rheumy (I really hated the sarc team

at IU, and I was still trying to assemble some specialists nearer to my

home). Can you believe I was positive for five different immuno

diseases? They ruled it down to either sarc or lympoma, but the neuro

symptoms continued to worsen. The rhemy prescribed 20, 40, then 60 mg

of prednisone. he wasn't experienced in sarc, though. Somewhere in

there I had a mediastenoscopy. Then, since I was tapering down DURING

my Yellowstone vacation, my ACE Level kept climbing. My rheumy and

internist said my neurologist had NO experience with sarc and that I

should find someone on the internet. Luckily I had already found this

great group (member since 2000)

The happiest person about my initially acurate diagnosis was my

opthalmologist. He was a sweet older man who by instinct had known

that my eye problems over the years weren't typical for MS but very

typical for neurosarc. But he also cried in front of me and my

husband.. my first hint of the hard road ahead.

Oh, Whew, Toni! Can you tell that I'm not speaking well but am dying

to speak? I hope I didn't make this worse. I just wanted you to know

what more folks than not in our 200+membership have had to fight what

you are fighting. I'd like to say that having a diagnosis in stone

helps things, but for most it is just the beginning of the road, or

shall I say see-saw off medications a treatments. I do know that after

going to see Dr. Stern in Atlanta (Was Rose's neurosarc doc) for a

second specialist opinion and having a second and rare positive biopsy

(a year and a half ago I had a weird and painful subcutaneous breakouts

-- hard and oddly shaped tumorlike masses).. Having a double double

whammy lets me forego any suspicions about my dx and leaves me as a

weird labrat.

You are luckier than you think. Our disease seems to be the the rare

disease of the year for funding and research. There's a whole new

classification of drugs available since my first meeting with Baughman

in 91. And, finally, the left hand is sharing what the right hand is

doing and even attempting to do. By far, though the thing that has

helped me through the past few years has been this group, and the state

sarc support system. My first day of chemo (cytoxan in November of 91)

I came home to a kind phone call from the president of our local

chapter.

And now, quite tardy, I am going to try to find some of our group on

Dalnet.

WELLER, WELLER, WELLER, OY, OY, OY

RENENES, BOOTSTRAP FAIRY.

> Hi All,

>

> I just can't believe these bloody dr's anymore, today was just about

> the

> last straw.  I had another rheumy appt at 8:50am this morning and

> after

> waiting for 2 hours to see the dr, I find that I didn't get to see my

> regular rheumy again today but another offsider or whatever he was. 

> I was

> in there for a total of about 10 to 15 mins, treated me with total

> insignificance, couldn't wait to get me out the door.  It appears VERY

> obvious to me that my regular rheumatologist has palmed me off.  I

> laid on

> him the problems I'm having with social security disability because

> none of

> them will commit to the neurosarc diagnosis even though that's what

> they

> are treating me for and was their initial working diagnosis.  He said

> there

> hasn't been any clinical evidence to make a definite diagnosis only

> the

> symptoms that I state I am having.  So it was a come back in three

> months

> and see how you're going.  I said I had an appt with the immunologist

> in 3

> weeks and he said well just wait and see what he has to say.  My pain

> and

> fatigue has worsened over the last 3 weeks, my cough is still there,

> not

> any better and my GP has increased my prednisone from 30 to 40mg. 

> After

> telling this quack everything I could in the few minutes I gathered

> he was

> willing to spare, he didn't offer me ANYTHING, not another chest MRI,

> no

> blood work, NO NOTHING.  He said why don't you try going back to work

> for

> an hour a day.......I just couldn't believe it.  Apart from the fact

> that I

> can barely stay awake for a full on concentrated hour, by the time I

> got

> ready for work, showered and dressed, got the bus to work, I'd have

> to turn

> around and come home again.  Bloody hell, what is wrong with these

> drs.  I

> told him about these mini seizures or switching off episodes I have

> where I

> just stare into space until I I finally get back with it again on my

> own or

> someone is calling me back to the real world, my slurred speech, the

> little

> electric shocks I have just as I am falling asleep that jolt me wide

> awake

> again so I hardly get any sleep at all.  He says, well I haven't

> noticed

> any slurring speech since you've been talking to me.  Honestly I

> could have

> punched him in the face.  My hubby just sat there shaking his head. 

> Just

> before the dr was ushering us out, he just said come on darl, let's

> get out

> of here.  He doesn't know what he's talking about.  So I left

> starting to

> wonder if maybe, just maybe they are right, is it in my head, but

> then it

> can't be, I have the symptoms, I have the raised blood levels, the

> out of

> control sugar levels, the low thyroid problems, the shakes, the

> imbalance,

> the insomnia, the pain, the fatigue, the intermittent ringing ears,

> slurred

> speech, nerve and muscle spasms, particularly in my face following the

> bells palsy, the piercing pain in my bones, etc etc etc.   you all

> know all

> about it.  What am I supposed to do......just hang tough for yet

> another

> month to see the immunologist and go through ALL this again....  I've

> really had it, really really had it with all these dr's who think

> they know

> all about you and your body after they've seen you for all of five

> minutes.

>

> Thanks for the vent and rave.....hope everyone else is doing a lot

> better

>

> Toni

> Brisbane, OZ

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.718 / Virus Database: 474 - Release Date: 9/07/2004

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> Live Group Chat:-

> Mondays & Fridays 10pm EST USA

> www.mirc.com download the program, follow instructions find Server

> Dalnet then type in /join #NSChat. If you need help please notify

> at topdat@... or topdat on yahoo messenger.

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>