RE: , this is long

[Guest guest]

HI

,

I live

in No. Colorado, My primary doc is in Fort , the farthest I’ve ventured

to see docs is Denver, and that was one of the docs that was ready and willing

to treat me, had the Rx for Methotrexate all written out, and some how it came

into the conversation what my husband did, and she pulled back so fast, decided

I would need more tests and more consultations, of which that consultation told

me I was depressed and just needed treatment for that, she and I rather had it

out too. My PCP only sees me for a routine check up, when it comes to

Sarc he would always say call your pulmonologist, so now I just see my pulm

every 3 months or sooner if I need too, he does blood tests every 3 months, and

he is wonderful and most of the time listens to what I have to say. He has

a Sarc patient with Sarc in the heart, so he knows how bad this can get.

Last time I saw him and told him I was having more neruo pain, he said it was

time to see a neurologist again, and I begged him not to send me to Denver, so

I saw someone in Fort , he was excellent, but he had a stroke a couple

years ago, and he is not the same doctor, his experience made him a more compassionate

doctor, and he listen to every word I said and did a complete exam, said I needed

an MRI to rule out M.S. or any other abnormality, then he looked at me and

said, “but you and I both know that you have N.S. and that it doesn’t

always show up on the MRI, but your hx and exam are certainly N.S. Do you

know I couldn’t decide if I should hug him or just cry! So the MRI

didn’t show any brain lesions, although he said he was certain they were

there and in my spine, it should my sinus cavities were full, report said ?

polyps, but he figured it was Sarc. But wanted me to see an ENT, thus the ENT

story.

So I am

very blessed to have two caring doctors who live only 15-30 mins. Away, is should

say 3 my PCP is wonderful too!

Wow

sorry to be so long winded.

I agree

with you the government should do something about letting health insurance

dictate how doctors are going to practice, I had to pay $100 for a tube of

ointment I use on my Sarcoid lesions that lasted me 4 years, because the

Insurance said I needed to try OTC’s first, my doctor even called, can

you believe that, the insurance company deciding not my doctor what is best for

me, they turned me down for Remicade too! So frustrating good thing I could

afford the ointment but no way on the Remicade, and we’ve paid

thousandsssssssssssssssss of dollars on health insurance, like 1200 a

month! The people who they talk to usually don’t have a clue either,

well this is certainly one of my soap boxes. Like here’s a good

one, the hosp. sent me a bill for the MRI for almost $4000, the insurance paid

like $800 and said I owed $210, according to their contract. So that

means if you don’t have insurance you get to pay $4000. We are still In a

dispute with a Denver

hosp. for $1800, when they call every 6 months I tell them to fight it

out with the insurance we had then. One thing I found interesting is that

one time the caller told me that because it is a Hospital they can never report

it to the Credit agencies, that was all I needed to hear.

Marla

Bramer

" Faith

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

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Saturday, April 07, 2007

3:34 PM

To: Neurosarcoidosis

Subject: RE:

Re:Where do I begin?

Marla, are you seeing Dr's in Nashville? The only

doctor I've had to examine me was the new Hematologist.. in like 4

years. They look at me as if I have 2 heads, then brush me off as if I'm

totally off the wall.. I begged my PCP to listen to me, told her that she

wasn't getting the full picture when all she would let me do was to give her

1 symptom at a time.. and seeing her once every 3 months.. Now, the symptoms

of anemia can be along with many others, Shortness of Breath on minimal

exertion, Chest tightness, fatigue, palipatations.. etc.. all of these

being the ones I have.. she would either allow me to tell her I was Short of

breath, or have chest tightness.. never at the same visit, she

considered each one a complaint. grrrr.. Yes Doctors were more caring back in

the day, before managed care.. now they are only concerned with if they are

gonna get paid or not. and the quicker they get you in and get you out the

better they get paid. If you have a chronic illness, they don't get paid the

same,for your visits, because you have to keep coming back.. The

government should be ashamed.. and the medical people for allowing all of

this to happen..

--

Re:Where do I begin?

I also have anemia. My hemotologist told me that taking iron pills

was useless. She said I needed IV iron. I had been taking Niferex 150 for

months and I thoiught it was helping but when they did a CBC it showed that

it was not working.

At first they put me on IV iron and Procrit. When my iron level was

up to normal range they stopped the IV iron and switched from Procrit to

Aerpnesp (sp?) It is suppose to be more powerful and cost less than Procrit.

Anyway it finely kicked in and my hemoglobin is now 11.3.

Today I had a visit with my internest who laughed when I told him

the hemotologist said that they thought I had Anemia of Chronic Disease. He

then laughed and said that is what they alwaysmsay when they can't figure

out why you are not making good RBC.

Take Care

Judy in PA

[Guest guest]

You go girl.. lol Its a shame that people that don't have medical backgrounds are at the mercies of these idiots..My parents which aren't spring chickens anymore, will still ask me if something sounds right to me, when they go to the doctor..and if something needs appealed you better know they know I can do that.. I know there are people on here lots sicker than me.. have been sick a lot longer, and have better sense than I do.. but guys please don't let these people treat you with disrespect..That's something that one human can do to another without crossing any lines. If you feel that any of your doctors have been disrespectful to you there are people you can go to like internal affairs or patient affairs.. won't cost a dime to pick up the phone and just talk to them.. now you might not get to see the butt hole that disrespected you again.. but so what.. they have just done you a favor..

-- Re:Where do I begin?

I also have anemia. My hemotologist told me that taking iron pills was useless. She said I needed IV iron. I had been taking Niferex 150 for months and I thoiught it was helping but when they did a CBC it showed that it was not working.

At first they put me on IV iron and Procrit. When my iron level was up to normal range they stopped the IV iron and switched from Procrit to Aerpnesp (sp?) It is suppose to be more powerful and cost less than Procrit.

Anyway it finely kicked in and my hemoglobin is now 11.3.

Today I had a visit with my internest who laughed when I told him the hemotologist said that they thought I had Anemia of Chronic Disease. He then laughed and said that is what they alwaysmsay when they can't figure out why you are not making good RBC.

Take Care

Judy in PA

[Guest guest]

This goes for nurses & other staff too. My daughter Ginny has been in the hospital more than out since November, with chronic pancreatitis. She's always been treated well, or at least okay, by all her nurses. UNTIL this last time. She had a j-tube inserted (a tube inserted through an abdominal incision, used for feedings) and 2 days post-op developed a wound abscess. Any of you who've ever suffered an abscess or hematoma knows how painful they can be. One nurse who came in to change Ginny's bandage decided to play doctor & try to drain the abscess by pressing on it. Ginny cried & begged her to stop, but she just continued. Then Ginny grabbed her hand & the nurse told her to take her f---ing hand off her. Ginny reported the nurse to the head nurse & the next day, while I was there, a patient rep came in to talk to her about it. She took it very seriously & assured Ginny that she would not see that nurse again. So don't hesitate to contact patient reps, quality assurance people, etc.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: , this is longDate: Sat, 7 Apr 2007 19:53:09 -0500 (Central Daylight Time)

You go girl.. lol Its a shame that people that don't have medical backgrounds are at the mercies of these idiots..My parents which aren't spring chickens anymore, will still ask me if something sounds right to me, when they go to the doctor..and if something needs appealed you better know they know I can do that.. I know there are people on here lots sicker than me.. have been sick a lot longer, and have better sense than I do.. but guys please don't let these people treat you with disrespect..That's something that one human can do to another without crossing any lines. If you feel that any of your doctors have been disrespectful to you there are people you can go to like internal affairs or patient affairs.. won't cost a dime to pick up the phone and just talk to them.. now you might not get to see the butt hole that disrespected you again.. but so what.. they have just done you a favor..

-- Re:Where do I begin?

I also have anemia. My hemotologist told me that taking iron pills was useless. She said I needed IV iron. I had been taking Niferex 150 for months and I thoiught it was helping but when they did a CBC it showed that it was not working.

At first they put me on IV iron and Procrit. When my iron level was up to normal range they stopped the IV iron and switched from Procrit to Aerpnesp (sp?) It is suppose to be more powerful and cost less than Procrit.

Anyway it finely kicked in and my hemoglobin is now 11.3.

Today I had a visit with my internest who laughed when I told him the hemotologist said that they thought I had Anemia of Chronic Disease. He then laughed and said that is what they alwaysmsay when they can't figure out why you are not making good RBC.

Take Care

Judy in PA

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