RE: I know I should know this

[Guest guest]

, you've probably already told us this, but I'm wondering who is following this problem? Are you seeing a hematologist? I'm also curious about the pounding feeling in your ears. Have you been checked for heart arrhythmias? Back in 1994, I was first diagnosed with sarc when I had a chest xray after I developed atrial fibrillation. The upper chambers of my heart were beating about 200x/min. Periodically, I would feel like a rush to my head, in my ears, that would pass in a few seconds. I couldn't count my pulse, even at the carotids, because it was so irregular. I waited a couple of hours before I woke my husband to take me to the hospital. (Nurses are notoriously afraid of going to the E.R. unnecessarily.) It took almost 4 hrs. to convert my heart to a normal rhythm, and I had several recurrences over the next few months. I would get a feeling of my heart pounding & usually the rushing feeling in my ears. My doctor adjusted my meds a few times until I went several weeks without an episode, then weaned my off the meds. I've never had that kind of problem again, although I've had tachycardia.

Well, didn't mean to write such a long letter, especially to someone who can't see well! I'm sorry, , maybe you can get someone to read it to you?

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: "NS Group" <Neurosarcoidosis >Subject: I know I should know thisDate: Sat, 17 Feb 2007 16:11:38 -0600 (Central Standard Time)

Hey everyone, sorry I haven't been around much, and I do appologize about the Thursday and Sunday Chat's, I just can't see well enough right now to keep up with them.. So, I'm gonna put them on hold for awhile since no one has shown any interest in helping, till I can get my eyes under control... Please know that the chat room is open 24/7 and you can go there anytime and chat.. Marla's son has graciously provided us with this wonderful place where we can go and talk to one another in real time.. Marla and her son Joe have been a huge blessing to this group, and I want to say thank you.. the the both of them.. you can never say that enough..

Now, I do have a question, that I know I should know the answer to, but for some reason I just don't... I've been taking Procrit now for about a year because of my Hemocrit dropped last Feburary and I had to receive 2 units of blood.. and huge amounts of Normal saline IV..My Hemocrit has never gotten above 32 and normal is 38..even with the procrit and the blood transfusion. I've just recently had another drop to 27 no signs of active bleeding anywhere, I've had the colonoscopy, negative..This wouldn't bother me if I wasn't so symptomatic with it.. My heart feels like its pounding, and pounds all the way up into my ears, as crazy as that sounds. and I'm so short of breath with just standing up.. I know, when I first realized that something was wrong, and I mean before I was dx.. that I was a blood donor.. and I went to give blood and the refused me because my HCT and HGB were low.. that prompted me to start searching into what may be going on..

Even though, I've had these 3 surgeries with my eye, I don't think I would have lost that kind of blood from my eye? I'm beginning to think that this is a warning sign to me that my disease may be active again. Does anyone have a theory or a clue about this? They've increased my procrit to 40,000units weekly, and if I don't stablize at 36 I'm to increase it to 60,000units a week and then regular blood transfusions..I don't want that..

So as you see, I'm finding myself, seeking more answers..

And Becky, if you see this.. Please call me, I've lost your phone number.. and I'm worried about you...

Hugs,

<< 010105zd_bye_3_cut.gif >> The average US Credit Score is 675. The cost to see yours: $0 by Experian.

[Guest guest]

Yeah, Rose I'm having a hard time reading things but I have a teenager here that will read for me, if there are some answers..I've got my fonts on huge print too, which helps a lot and use the magnifyer on my mouse.. Anyway, I've checked my pulse for irregular beats, and sometimes I think its irregular and sometimes its not, its just pounding. You know I was a ER nurse for 10 years, and yes the only way I've gone is via ambulance and there is no question as that's what needs to happen.. I am seeing a hematologist and he's following this but when he found out that I have systemic sarcoid he says "oh well, you have , Chronic Illness Anemia, and don't worry about it" Well, I am worried about it, because I know that if its left untreated it can cause cardiomyopathy, and I told him I was symptomatic, he did decide to increase the procrit. I have fired the "Dr Pretty Pants" that was useless anyway.. Gosh, I've thought of atrial fib, but like I said I can't seem to determine that my heart beat is irregular.. and is usually associated with exertion.. or slight movement at the moment.

Thanks Rose..

-- I know I should know thisDate: Sat, 17 Feb 2007 16:11:38 -0600 (Central Standard Time)

Hey everyone, sorry I haven't been around much, and I do appologize about the Thursday and Sunday Chat's, I just can't see well enough right now to keep up with them.. So, I'm gonna put them on hold for awhile since no one has shown any interest in helping, till I can get my eyes under control... Please know that the chat room is open 24/7 and you can go there anytime and chat.. Marla's son has graciously provided us with this wonderful place where we can go and talk to one another in real time.. Marla and her son Joe have been a huge blessing to this group, and I want to say thank you.. the the both of them.. you can never say that enough..

Now, I do have a question, that I know I should know the answer to, but for some reason I just don't... I've been taking Procrit now for about a year because of my Hemocrit dropped last Feburary and I had to receive 2 units of blood.. and huge amounts of Normal saline IV..My Hemocrit has never gotten above 32 and normal is 38..even with the procrit and the blood transfusion. I've just recently had another drop to 27 no signs of active bleeding anywhere, I've had the colonoscopy, negative..This wouldn't bother me if I wasn't so symptomatic with it.. My heart feels like its pounding, and pounds all the way up into my ears, as crazy as that sounds. and I'm so short of breath with just standing up.. I know, when I first realized that something was wrong, and I mean before I was dx.. that I was a blood donor.. and I went to give blood and the refused me because my HCT and HGB were low.. that prompted me to start searching into what may be going on..

Even though, I've had these 3 surgeries with my eye, I don't think I would have lost that kind of blood from my eye? I'm beginning to think that this is a warning sign to me that my disease may be active again. Does anyone have a theory or a clue about this? They've increased my procrit to 40,000units weekly, and if I don't stablize at 36 I'm to increase it to 60,000units a week and then regular blood transfusions..I don't want that..

So as you see, I'm finding myself, seeking more answers..

And Becky, if you see this.. Please call me, I've lost your phone number.. and I'm worried about you...

Hugs,

<< 010105zd_bye_3_cut.gif >>

The average US Credit Score is 675. The cost to see yours: $0 by Experian.

[Guest guest]

Hmmm . . . . "Chronic Illness Anemia." Is that really a diagnosis? I'm not anemic, and I know several people with chronic illnesses who aren't anemic. , do you really have a lot of confidence in this guy, or would you feel better getting a second opinion? Now, I'll admit that I never did know much about hematology, and I've probably forgotten most of what I did know, but I do know that doctors (and nurses, and midwives, etc.) sometimes resort to official-sounding terms when they don't have an answer. "Pelvic congestion" is a favorite of one of our OB docs. Just a thought.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: I know I should know thisDate: Sat, 17 Feb 2007 20:42:43 -0600 (Central Standard Time)

Yeah, Rose I'm having a hard time reading things but I have a teenager here that will read for me, if there are some answers..I've got my fonts on huge print too, which helps a lot and use the magnifyer on my mouse.. Anyway, I've checked my pulse for irregular beats, and sometimes I think its irregular and sometimes its not, its just pounding. You know I was a ER nurse for 10 years, and yes the only way I've gone is via ambulance and there is no question as that's what needs to happen.. I am seeing a hematologist and he's following this but when he found out that I have systemic sarcoid he says "oh well, you have , Chronic Illness Anemia, and don't worry about it" Well, I am worried about it, because I know that if its left untreated it can cause cardiomyopathy, and I told him I was symptomatic, he did decide to increase the procrit. I have fired the "Dr Pretty Pants" that was useless anyway.. Gosh, I've thought of atrial fib, but like I said I can't seem to determine that my heart beat is irregular.. and is usually associated with exertion.. or slight movement at the moment.

Thanks Rose..

-- I know I should know thisDate: Sat, 17 Feb 2007 16:11:38 -0600 (Central Standard Time)

Hey everyone, sorry I haven't been around much, and I do appologize about the Thursday and Sunday Chat's, I just can't see well enough right now to keep up with them.. So, I'm gonna put them on hold for awhile since no one has shown any interest in helping, till I can get my eyes under control... Please know that the chat room is open 24/7 and you can go there anytime and chat.. Marla's son has graciously provided us with this wonderful place where we can go and talk to one another in real time.. Marla and her son Joe have been a huge blessing to this group, and I want to say thank you.. the the both of them.. you can never say that enough..

Now, I do have a question, that I know I should know the answer to, but for some reason I just don't... I've been taking Procrit now for about a year because of my Hemocrit dropped last Feburary and I had to receive 2 units of blood.. and huge amounts of Normal saline IV..My Hemocrit has never gotten above 32 and normal is 38..even with the procrit and the blood transfusion. I've just recently had another drop to 27 no signs of active bleeding anywhere, I've had the colonoscopy, negative..This wouldn't bother me if I wasn't so symptomatic with it.. My heart feels like its pounding, and pounds all the way up into my ears, as crazy as that sounds. and I'm so short of breath with just standing up.. I know, when I first realized that something was wrong, and I mean before I was dx.. that I was a blood donor.. and I went to give blood and the refused me because my HCT and HGB were low.. that prompted me to start searching into what may be going on..

Even though, I've had these 3 surgeries with my eye, I don't think I would have lost that kind of blood from my eye? I'm beginning to think that this is a warning sign to me that my disease may be active again. Does anyone have a theory or a clue about this? They've increased my procrit to 40,000units weekly, and if I don't stablize at 36 I'm to increase it to 60,000units a week and then regular blood transfusions..I don't want that..

So as you see, I'm finding myself, seeking more answers..

And Becky, if you see this.. Please call me, I've lost your phone number.. and I'm worried about you...

Hugs,

<< 010105zd_bye_3_cut.gif >>

The average US Credit Score is 675. The cost to see yours: $0 by Experian.

<< 010105zd_bye_3_cut.gif >> Find what you need at prices you’ll love. Compare products and save at MSN® Shopping.

[Guest guest]

No Rose, right now the only confidence I have in anyone is you guys! This hospital has totally blown me off for years now.. I've told Damian, that if I should die before he turns 18 that I want him to sue their a$$'s off for not taking care of me... and therefore him losing his mom before he was able to take care of himself. This guy is over the stem cell research at Vanderbilt, and I go Monday to see the Rheumi that will blow me off, and I'm to see the neurosurgeon, that won't blow me off but deals only with my spine/disc/deterioration and Physical Therapy.. While I'me waiting in between I've been thinking of going and talking to a patient affairs person, maybe to file a formal complaint about Dr Pretty Pants, and to share my dissapointment in their hospital.. They use to have a commercial on TV that said they were the listening hospital, well haven't seen that one in a while.. so I guess someone else had a complaint.. I know another really good hematologist at the hospital I use to work for.. I think your right, I'm gonna call Monday and make an appointment.

Thanks

-- I know I should know thisDate: Sat, 17 Feb 2007 16:11:38 -0600 (Central Standard Time)

Hey everyone, sorry I haven't been around much, and I do appologize about the Thursday and Sunday Chat's, I just can't see well enough right now to keep up with them.. So, I'm gonna put them on hold for awhile since no one has shown any interest in helping, till I can get my eyes under control... Please know that the chat room is open 24/7 and you can go there anytime and chat.. Marla's son has graciously provided us with this wonderful place where we can go and talk to one another in real time.. Marla and her son Joe have been a huge blessing to this group, and I want to say thank you.. the the both of them.. you can never say that enough..

Now, I do have a question, that I know I should know the answer to, but for some reason I just don't... I've been taking Procrit now for about a year because of my Hemocrit dropped last Feburary and I had to receive 2 units of blood.. and huge amounts of Normal saline IV..My Hemocrit has never gotten above 32 and normal is 38..even with the procrit and the blood transfusion. I've just recently had another drop to 27 no signs of active bleeding anywhere, I've had the colonoscopy, negative..This wouldn't bother me if I wasn't so symptomatic with it.. My heart feels like its pounding, and pounds all the way up into my ears, as crazy as that sounds. and I'm so short of breath with just standing up.. I know, when I first realized that something was wrong, and I mean before I was dx.. that I was a blood donor.. and I went to give blood and the refused me because my HCT and HGB were low.. that prompted me to start searching into what may be going on..

Even though, I've had these 3 surgeries with my eye, I don't think I would have lost that kind of blood from my eye? I'm beginning to think that this is a warning sign to me that my disease may be active again. Does anyone have a theory or a clue about this? They've increased my procrit to 40,000units weekly, and if I don't stablize at 36 I'm to increase it to 60,000units a week and then regular blood transfusions..I don't want that..

So as you see, I'm finding myself, seeking more answers..

And Becky, if you see this.. Please call me, I've lost your phone number.. and I'm worried about you...

Hugs,

<< 010105zd_bye_3_cut.gif >>

The average US Credit Score is 675. The cost to see yours: $0 by Experian.

<< 010105zd_bye_3_cut.gif >>

Find what you need at prices you’ll love. Compare products and save at MSN® Shopping.

[Guest guest]

Hi

,

I’ve

always been anemic, as a child I had to go get iron shots, and eat liverL, as an adult I run low,

once was 21 but that was after a pregnancy and delivery, I didn’t want

blood so I just ate a lot of spinach which I don’t mind, until I was sick

of spinach salads, anyway I still run 32-33, I was given iron IV while pg. and

had an anaphylactic shock reaction, so know I cannot take it even in pill form,

I do still eat spinach now and then and that manages to keep me low normal. I guess

they want your HCT higher because it has dropped so low, and they don’t

want to see you in the 20 range again. And I don’t know if this is

related to Sarc or not?

I could

never give blood either, didn’t weigh enough and low Hct too. I don’t

know that I was much help, but know you’re not alone, and Thank You for

the kind words. None of this could happen without you, Tracie, Rose, Darlene,

and my mind just went blank so if I missed one of the mods. Please know how

wonderful you all are for keeping us up and running, I hope your eyes and HCT improve

for you.

Marla

Bramer

" Faith

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

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Saturday, February 17, 2007

3:12 PM

To: NS Group

Subject: I know

I should know this

Hey everyone, sorry I haven't been around much, and I do

appologize about the Thursday and Sunday Chat's, I just can't see well enough

right now to keep up with them.. So, I'm gonna put them on hold for

awhile since no one has shown any interest in helping, till I can get my eyes

under control... Please know that the chat room is open 24/7 and you can go

there anytime and chat.. Marla's son has graciously provided us with this

wonderful place where we can go and talk to one another in real time.. Marla

and her son Joe have been a huge blessing to this group, and I want to say

thank you.. the the both of them.. you can never say that enough..

Now, I do have a question, that I know I should know the

answer to, but for some reason I just don't... I've been taking Procrit now

for about a year because of my Hemocrit dropped last Feburary and I had to

receive 2 units of blood.. and huge amounts of Normal

saline IV..My Hemocrit has never gotten above 32 and normal is 38..even

with the procrit and the blood transfusion. I've just recently had

another drop to 27 no signs of active bleeding anywhere, I've had the

colonoscopy, negative..This wouldn't bother me if I wasn't so symptomatic

with it.. My heart feels like its pounding, and pounds all the way up into my

ears, as crazy as that sounds. and I'm so short of breath with just standing

up.. I know, when I first realized that something was wrong, and I mean

before I was dx.. that I was a blood donor.. and I went to give blood and the

refused me because my HCT and HGB were low.. that prompted me to start

searching into what may be going on..

Even though, I've had these 3 surgeries with my eye, I

don't think I would have lost that kind of blood from my eye? I'm

beginning to think that this is a warning sign to me that my

disease may be active again. Does anyone have a theory or a clue about

this? They've increased my procrit to 40,000units weekly, and if I don't

stablize at 36 I'm to increase it to 60,000units a week and

then regular blood transfusions..I don't want that..

So as you see, I'm finding myself, seeking more answers..

And Becky, if you see this.. Please call me, I've

lost your phone number.. and I'm worried about you...

Hugs,