Rant Score

March 12, 2007

Rose, thank you for scoring this rant. I was going to-- but I was concerned about the lack of expletives also.

As for the real content-- that neuro needs his head examined. You have sarc-- pred's no longer effective--as you've been on it previously--so onto bigger and better stuff.

Call the lab where you got the bloodwork done, and insist they send a second copy to the MD. It's bullsh & # that he didn't look for it, and have his staff call WHILE YOU WERE THERE!!

Oh, and as for the rant-- there are all good!~************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

March 12, 2007

Very good rant, Tony. Extra points for out-doctoring your doctor. Unfortunately, some deductions for lack of cuss words or at least *!# & #*.

Artistic content: 7.9 Presentation: 6.8

Keep practicing!

BTW, I'm intrigued by your address, dancingangelsfarm. Do you have an actual farm?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Tired & frustratedDate: Mon, 12 Mar 2007 23:14:58 -0000

MRI head & c-spine bright & early this morning + CT-chest. These were to compliment the GA scan & blood test done last month...yep, that's because it took the third party payer 4 weeks to approve the MRI + 2 weeks for an available appointment. That's not what set me off. I understand that it is what it is and it's business for the payers. Despite the pounding headache, I went forward this morning with a smile on my face, knowing today held the promise of relief, even if temporary, from the beast. Little did I know that the day would take a nosedive in short order. Add the thump, thump, thump, brrrrrr of the MRI to the already pounding headache & by 9 AM it hurt to keep my eyes open. No problem, or so I thought, the meeting with the Dr to review the results shouldn't take too long, then I could head home, hopefully with rx in hand, to rest before heading off to work. Wrong, 3 hours later I made my second trip to the reception window to see if they forgot about me. Apparently, they are always triple booked on Mondays. Mental note to self...avoid Monday & afternoon appointments or bring a sleeping bag.4 1/2 hours later I was finally in the exam room talking with the Dr. The MRI & CT were normal. No big surprise there...every scan has been 'normal' over the past 15 years. He then tells me that I don't have MS. Great, grand, wonderful! That's very comforting to know but the dx was sarcoid of the CNS, remember? Nope, nothing on the MRI or CT to suggest sarc, let alone neuro sarc. Great news, I'm cured, let me pass out cigars & invitations to the party...just wish it was that easy! What about the non-caseating granulomas, the elevated ACE levels, the bi-lateral facial palsy, the diplopia / blurred vision, the history of neurologic events, the headaches, the lupus pernio on my nose, & the rest of the issues that support the diagnosis??? I asked politely about the results of the GA scan & the blood test. A quizical look from the doctor as there aren't any other results in the file. He goes on line with the imaging center, looks up the report & low & behold the GA scan came back postive with findings that "...are consistant with sarcoidosis." He gives me another puzzled look..."What do we have you on right now?" NOTHING! I remind him that he was waiting for the results of the blood work & all of the scans before starting treatment with cyclosporine(dang short term memory...at least I think that was the drug)...that was six weeks & many hours of pain ago! "And how long have you had the headache?" This time around, about 10 weeks with maybe 4 or 5 days during that time when I wasn't tempted to curl up in the fetal position next to the commode on the bathroom floor.He scribbles on his pad & hands me a script for 5 days worth of prednisone despite my reminder that steriods turn me in Mr Hyde. "Well, we can't give you anything else until we run some blood tests to get a baseline." I explained that I had those lab tests six weeks ago...the missing results, remember? "Well, that's all I can do for now. Schedule an appointment for next week." No point in continuing the conversation. I took the rx, scheduled a follow up next week, then drove home to feed the cat before heading into work. My head feels as if it's in a vice & my eyes as if I were Curly & Moe was having a hayday poking me with his fingers. Perhaps the Dr was overwhelmed with all the extra patients. I'll give him the benefit of the doubt for now. The renewal of my FMLA paperwork is due shortly...until the headaches, fatigue & other 'fun' issues subside, I'll have to play nice in the sandbox or chance having to miss work on the worst of days without the protection of FMLA. If things don't improve when I speak to him next week I'll be looking for a new neurologist...my gosh, as if the beast is bad enough without all the other crap...can you tell that I'm very frustrated right now. Sorry about the rant. Thanks for letting me get that out. I know you folks have been down the same road & understand the frustration. Peace to all...

With tax season right around the corner, make sure to follow these few simple tips.

March 13, 2007

Sorry ladies...my Mom always taught me to be a gentleman, especially

in mixed companies(not to mention that Marla's husband is an

attorney), so I'll graciously accept my scores and move forward.

Thank you all for your support...yesterday was frustrating day and I

broke my own rule...don't let 'em get you down. My little sign with

Dorie the absent minded fish that is posted on the fridge reminded me

last night to 'just keep swimming'. Undoubtedly good advice.

I've decided to seek out a new doctor. The current doc is supposedly

good but I find that this counts for little if they don't have the

time to use their talent.

Rose, you asked about my e-mail address. I have a small, non-

commercial farm complete with orchards, vineyards, an apiary,

chickens, and... I call it my little slice of heaven on earth. The

farm makes me drag my carcass out of bed & get dressed no matter how

I feel as the livestock needs to be fed & watered. The critters would

be laughing if I was in my jammies or dressed liked some of the folks

said they dress to get the mail (still rofl about those

comments)...anyway, it's something I enjoy which keeps me from

mailing those invitations to my pity party.

I started today on the right foot as I know that I need to look out

for me. I called the lab & asked them to resend my results, called

the pharmacy to ask why my rx says " take as directed " ...what the heck

does that mean?...then called the doc's office to straighten out the

rx. Regardless of the detours, today is a better day. Peace to

all...

>

> Rose, thank you for scoring this rant. I was going to-- but I was

concerned

> about the lack of expletives also.

>

> As for the real content-- that neuro needs his head examined. You

have

> sarc-- pred's no longer effective--as you've been on it previously--

so onto bigger

> and better stuff.

>

> Call the lab where you got the bloodwork done, and insist they send

a second

> copy to the MD. It's bullsh that he didn't look for it, and have

his staff

> call WHILE YOU WERE THERE!!

>

> Oh, and as for the rant-- there are all good!~

>

> **************************************

> AOL now offers free email to everyone. Find out more about what's

> free from AOL at http://www.aol.com.

>

March 13, 2007

Tony,

In which State is your little piece of heaven? It sounds wonderful. At

least I can dream of it...my husband and I would like to like out in the

sticks, but I need to be close to docs and stuff cause I don't do a

whole lot of driving.

Terri

> >

> > Rose, thank you for scoring this rant. I was going to-- but I was

> concerned

> > about the lack of expletives also.

> >

> > As for the real content-- that neuro needs his head examined. You

> have

> > sarc-- pred's no longer effective--as you've been on it previously--

> so onto bigger

> > and better stuff.

> >

> > Call the lab where you got the bloodwork done, and insist they send

> a second

> > copy to the MD. It's bullsh that he didn't look for it, and have

> his staff

> > call WHILE YOU WERE THERE!!

> >

> > Oh, and as for the rant-- there are all good!~

> >

> > **************************************

> > AOL now offers free email to everyone. Find out more about what's

> > free from AOL at http://www.aol.com.

> >

>

March 14, 2007

Terri, I'm in New York, aka the land of taxes. I have 5 1/2 acres on

the outskirts of the Brockport / Rochester area, close enough to

services that I may need but far enough to enjoy the peace & quite of

the country side.

>

> Tony,

>

> In which State is your little piece of heaven? It sounds

wonderful. At

> least I can dream of it...my husband and I would like to like out in

the

> sticks, but I need to be close to docs and stuff cause I don't do a

> whole lot of driving.

>

> Terri

March 14, 2007

Tony,

Sounds awesome. When I was young I lived in New York but we were on

Long Island. My Dad was Navy.

I know something about the taxes - the Commonwealth of Virginia taxes

you on everything! Where did the " Dancing Angels Farm " name come from?

I hope you don't think I am too nosy.

I read your post to Matt and was wondering how long you have been

dealing with the double vision? I have it in my left eye (since last

Sept) and it worsens as I get fatigued. I usually just end up closing

one eye as it gets worse but everything thinks I am winking at them -

hee hee.

Take care.

Terri G.

> >

> > Tony,

> >

> > In which State is your little piece of heaven? It sounds

> wonderful. At

> > least I can dream of it...my husband and I would like to like out in

> the

> > sticks, but I need to be close to docs and stuff cause I don't do a

> > whole lot of driving.

> >

> > Terri

>

March 15, 2007

Tony,

don’t worry my husband doesn’t read our emails! But I understand the

gentlemen thing, and that’s nice in this world we live in! keep on

having a good day, smile it works for everyone, when I am doing the make up of

other women, and tell them to smile to put their blush on, they not only smile

but start laughing, hey if’ that’s what it takes, then smile away,

but you must always smile while looking in the mirror! J Marla

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Tony

Sent: Tuesday, March 13, 2007

11:05 AM

To: Neurosarcoidosis

Subject: Re:

Rant Score

Sorry ladies...my Mom always taught me to be a

gentleman, especially