Re: Anemia issues

[Guest guest]

everytime I stand up or walk to the bathroom, I'm so out of breath and my heart races and beats hard up into my head, I hate that feeling.. Good luck!

,

Did they ever add the Folic Acid? If not, ask-- (demand) that they give you a script for at least 1mg a day. With our history of immunosupressive therapies-- this is one that the meds have permanently wiped out.

Also-- this is also a sign of hypo or hyperthyroid. Either one can give you the heartbeat to the chest. With you being so extremely anemic-- there isn't enough redblood cells in your blood to carry oxygen anywhere! So you probably need supplemental oxygen also. Please ask for a PFT-- and have them see what your DLCO levels are. Diffusion Lung Capacity Oxygenation. This will tell them what is happening as your are trying to walk around. Chances are that even if your pulse oxygenation shows 94 or 95%, you get up to move around, and you drop to the low 80%. This would show the need for portable oxygen at all times.

What happens is that as we sit around the house, our bodies have acclimated to this-- and so sitting still, we're ok. We have numbness in our extremities, and we've come to think of this as normal. It's not!

It is our bodies way of salvaging the oxygen we have to keep our organs functioning, and now you want to get up and go the bathroom. Your body needs more oxygen to the extremities, and so what little bit you have- becomes immediately depleted, and you are dizzy and lightheaded.

When you sit back down, you may even notice that your extremities become even more numb and tingling- burning-- as your vital organs grab the oxygen again to survive.

My local pulm refuses to look at the DLCO-- and so that has put me into the place of having to have the specialist in LA instruct him. It will and is causing pulmonary hypertension-- and with oxygen supplemention-- we may be able to put off that PPH for a few more years. (It causes the lungs to need more oxygen, so the lungs make the heart pump harder and faster, and that makes the pulmonary artery have to handle increased blood pressure, and that makes the artery thicken to handle the increased blood pressure to the lungs-- and as it thickens- it narrows, and then we throw the blood clot that will hopefully kill us rather than leave us with a serious stroke and incapitation.)

Get on it girlfriend, you have all the symptoms!

Love ya,

Tracie

NS Co-owner/moderator************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Thank you for describing this - the dissemination test for pulmonary

function. I just had my first full PFT done and the technician was

showing me the results and said she was surprised because she thought

my dissemination results would be better.

I have such bad shortness of breath that I literally do noting all

day. Just taking a shower causes me terrible shortness of breath.

I am also really low on ferritin - protein measurement for iron - so

I'm very iron deficient. I've been begging them to give me an iron

transfusion. I hope the results from this test help to make my case.

It frustrates me so much because the stupid range for ferritin is 10-

300 and I'm up from 10 to 23 and they said, " well you're in

range " .....I could got postal if I hear that phrase again!!!! For

crying out loud at least get me into the middle of the range!!!

[Guest guest]

Thanks Tracie.. I've already discussed this with the hematologist.. he told me not to worry, which pisses me off, because I know what happens due to no blood circulating around in your veins.. Cardiomyopathy comes to my mind as well as what you've mentioned.. then heart transplant is the only treatment.. I told him but, my heart is pounding up in my head when I do the least bit of exertion. "Ohh, don't worry about it" yeah, but I am worried..They decided to increase the procrit for 1 month and see how that goes..if no big improvement then blood transfusions..

I have some folic acid I think here.. I can go ahead and start it but in all honesty if I do that then when I do talk them into checking my iron, folate, b12 levels they will be normal and then I'll be the nut case again.. So even though I hate this feeling, I need them to stumble up on it..I'll call and move my scheduled appointment up with my pulmo, but if he doesn't find or do anything.. I'm gonna just scream.. The rheumatologist says that if my folate and b12 studies are low then they can give me as much procrit as they want but it won't phase it.. did he draw any blood.. not only no but hell no..I'm working with idiots here.. grrr

Love back attcha,

-- Re: Anemia issues

In a message dated 3/11/07 8:15:54 PM Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes:

everytime I stand up or walk to the bathroom, I'm so out of breath and my heart races and beats hard up into my head, I hate that feeling.. Good luck!,Did they ever add the Folic Acid? If not, ask-- (demand) that they give you a script for at least 1mg a day. With our history of immunosupressive therapies-- this is one that the meds have permanently wiped out.Also-- this is also a sign of hypo or hyperthyroid. Either one can give you the heartbeat to the chest. With you being so extremely anemic-- there isn't enough redblood cells in your blood to carry oxygen anywhere! So you probably need supplemental oxygen also. Please ask for a PFT-- and have them see what your DLCO levels are. Diffusion Lung Capacity Oxygenation. This will tell them what is happening as your are trying to walk around. Chances are that even if your pulse oxygenation shows 94 or 95%, you get up to move around, and you drop to the low 80%. This would show the need for portable oxygen at all times.What happens is that as we sit around the house, our bodies have acclimated to this-- and so sitting still, we're ok. We have numbness in our extremities, and we've come to think of this as normal. It's not!It is our bodies way of salvaging the oxygen we have to keep our organs functioning, and now you want to get up and go the bathroom. Your body needs more oxygen to the extremities, and so what little bit you have- becomes immediately depleted, and you are dizzy and lightheaded. When you sit back down, you may even notice that your extremities become even more numb and tingling- burning-- as your vital organs grab the oxygen again to survive.My local pulm refuses to look at the DLCO-- and so that has put me into the place of having to have the specialist in LA instruct him. It will and is causing pulmonary hypertension-- and with oxygen supplemention-- we may be able to put off that PPH for a few more years. (It causes the lungs to need more oxygen, so the lungs make the heart pump harder and faster, and that makes the pulmonary artery have to handle increased blood pressure, and that makes the artery thicken to handle the increased blood pressure to the lungs-- and as it thickens- it narrows, and then we throw the blood clot that will hopefully kill us rather than leave us with a serious stroke and incapitation.)Get on it girlfriend, you have all the symptoms!Love ya,TracieNS Co-owner/moderator**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

The rheumatologist says that if my folate and b12 studies are low then they can give me as much procrit as they want but it won't phase it.. did he draw any blood.. not only no but hell no

You are right, you're dealing with idiots.

If you were to call the Rheumi and ask him to order the tests to check hte folate and B12-- as well as anything else he can think of-- let him know that you felt that he was on the ball- and can help you.

Where your other MD's are flakes-- maybe he could take over as the primary?

Sarc is a chronic inflammatory disease, and he deals with chronic inflammatory diseases-- so it might work.

I wish I could scream for you-- ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Tracie, another thing you mentioned that I'm really bothered by is the numbness in all of my extremites when I go to sleep.. I wake up and I have no feeling in either one of my legs or my hands.. I'm on O2 at night 2liters.. and this is not occasionally, its every night.. I wake up and nada, nothing.. I finally get myself to the side of the bed.. and I sit there and sleep till I wake myself up toddling over.. I think of myself as a "weeble" you know one of those little kids toys that are like people but they have rounded bottoms.. their little jingle goes, they weeble when they wobble but they don't fall down..hmm, I don't follow the last rule.. but I haven't fallen in a while.. but I find myself bumping off of walls alot!..

Hugs,

-- Re: Anemia issues

In a message dated 3/11/07 8:15:54 PM Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes:

everytime I stand up or walk to the bathroom, I'm so out of breath and my heart races and beats hard up into my head, I hate that feeling.. Good luck!,Did they ever add the Folic Acid? If not, ask-- (demand) that they give you a script for at least 1mg a day. With our history of immunosupressive therapies-- this is one that the meds have permanently wiped out.Also-- this is also a sign of hypo or hyperthyroid. Either one can give you the heartbeat to the chest. With you being so extremely anemic-- there isn't enough redblood cells in your blood to carry oxygen anywhere! So you probably need supplemental oxygen also. Please ask for a PFT-- and have them see what your DLCO levels are. Diffusion Lung Capacity Oxygenation. This will tell them what is happening as your are trying to walk around. Chances are that even if your pulse oxygenation shows 94 or 95%, you get up to move around, and you drop to the low 80%. This would show the need for portable oxygen at all times.What happens is that as we sit around the house, our bodies have acclimated to this-- and so sitting still, we're ok. We have numbness in our extremities, and we've come to think of this as normal. It's not!It is our bodies way of salvaging the oxygen we have to keep our organs functioning, and now you want to get up and go the bathroom. Your body needs more oxygen to the extremities, and so what little bit you have- becomes immediately depleted, and you are dizzy and lightheaded. When you sit back down, you may even notice that your extremities become even more numb and tingling- burning-- as your vital organs grab the oxygen again to survive.My local pulm refuses to look at the DLCO-- and so that has put me into the place of having to have the specialist in LA instruct him. It will and is causing pulmonary hypertension-- and with oxygen supplemention-- we may be able to put off that PPH for a few more years. (It causes the lungs to need more oxygen, so the lungs make the heart pump harder and faster, and that makes the pulmonary artery have to handle increased blood pressure, and that makes the artery thicken to handle the increased blood pressure to the lungs-- and as it thickens- it narrows, and then we throw the blood clot that will hopefully kill us rather than leave us with a serious stroke and incapitation.)Get on it girlfriend, you have all the symptoms!Love ya,TracieNS Co-owner/moderator**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

I wake up and I have no feeling in either one of my legs or my hands.. I'm on O2 at night 2liters.. and this is not occasionally, its every night.. I wake up and nada

,

See if your oxygen people can do an overnight pulse oximetry, with the finger thingie taped on overnight. This will tell them if you need that concentrator turned up a notch.

You are on a cpap also???

I truly believe and have discovered from trial and error on my part-- that if my sugar is high or I'm dehydrated even a tiny bit, that neuropathy is thru the roof.

I'm sure that with where you are at in this-- with the diabetes, the anemia, and without a doubt more-- that these issues are adding insult to injury.

Even tho my sugars were testing in the "high" normal range, it was too high for my nerves.

So, tonight, I at a box of Tootsie Roll Mini Chews-- and took and extra glucophage-- so maybe when the chocolate wears off, I can sleep. (Ok, I admit, I'm blowing it-- and I'm fighting a bit of depression myself--so screw it for today...)

Is there anyway you can get into another medical group that can help you?

An internal Medicine MD, that practices general medicine, and is willing to seriously look at what is happening?

How is your pulmonary sarc? Has anyone looked at chest xray in the last several years?

Can I beat them up? Can I, please?

I asked please...************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

,

I’m

sorry you going through this, I’ve been anemic all my life, and funny

thing is, my H & H have been in the normal range, all my tests are always

normal, but for me not to anemic unheard of, I had to take iron injections when

I was a kid, I was so anemic with my last pregnancy that my doc gave me IV inferon

(iron) and me and the baby went into antiepileptic reaction, I though we

were both checking out, real out of body experience, he’s 18 now and a

very tough kid. OK where was I going with this, well I understand completely

what you are saying about not wanting to take the Folic Acid etc.. but you want

them to see what’s wrong, but if they don’t do anything about it,

then you should try taking the folic acid etc. I think the supplements

like folic acid and I take the multiple B’s is what probably corrected my

H & H, not sure but think, which isn’t always easy. J hang in there we

need you! Marla

Marla

Bramer

" Faith

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

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Tuesday, March 13, 2007

12:58 PM

To: Neurosarcoidosis

Subject: Re:

Anemia issues

Thanks Tracie.. I've already discussed this

with the hematologist.. he told me not to worry, which pisses me off,

because I know what happens due to no blood circulating around in your

veins.. Cardiomyopathy comes to my mind as well as what you've mentioned..

then heart transplant is the only treatment.. I told him but, my heart is

pounding up in my head when I do the least bit of exertion. " Ohh, don't

worry about it " yeah, but I am worried..They decided to increase the procrit

for 1 month and see how that goes..if no big improvement then blood

transfusions..

I have some folic acid I think here.. I can go ahead

and start it but in all honesty if I do that then when I do talk them into

checking my iron, folate, b12 levels they will be normal and then I'll be the

nut case again.. So even though I hate this feeling, I need them to stumble

up on it..I'll call and move my scheduled appointment up with my pulmo, but

if he doesn't find or do anything.. I'm gonna just scream.. The rheumatologist

says that if my folate and b12 studies are low then they can give me as much

procrit as they want but it won't phase it.. did he draw any blood.. not only

no but hell no..I'm working with idiots here.. grrr

Love back attcha,

-- Re: Anemia issues

In a message dated 3/11/07

8:15:54 PM Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes:

everytime I stand up or

walk to the bathroom, I'm so out of breath and my heart races and beats hard

up into my head, I hate that feeling.. Good luck!

,

Did they ever add the Folic Acid? If not, ask-- (demand) that they give

you a script for at least 1mg a day. With our history of

immunosupressive therapies-- this is one that the meds have permanently wiped

out.

Also-- this is also a sign of hypo or hyperthyroid. Either one can give

you the heartbeat to the chest. With you being so extremely anemic--

there isn't enough redblood cells in your blood to carry oxygen

anywhere! So you probably need supplemental oxygen also. Please

ask for a PFT-- and have them see what your DLCO levels are. Diffusion

Lung Capacity Oxygenation. This will tell them what is happening as

your are trying to walk around. Chances are that even if your pulse

oxygenation shows 94 or 95%, you get up to move around, and you drop to the

low 80%. This would show the need for portable oxygen at all times.

What happens is that as we sit around the house, our bodies have acclimated

to this-- and so sitting still, we're ok. We have numbness in our

extremities, and we've come to think of this as normal. It's not!

It is our bodies way of salvaging the oxygen we have to keep our organs

functioning, and now you want to get up and go the bathroom. Your body

needs more oxygen to the extremities, and so what little bit you have-

becomes immediately depleted, and you are dizzy and lightheaded.

When you sit back down, you may even notice that your extremities become even

more numb and tingling- burning-- as your vital organs grab the oxygen again

to survive.

My local pulm refuses to look at the DLCO-- and so that has put me into the

place of having to have the specialist in LA instruct him. It will and

is causing pulmonary hypertension-- and with oxygen supplemention--

we may be able to put off that PPH for a few more years. (It causes the

lungs to need more oxygen, so the lungs make the heart pump harder and

faster, and that makes the pulmonary artery have to handle increased blood

pressure, and that makes the artery thicken to handle the increased blood

pressure to the lungs-- and as it thickens- it narrows, and then we throw the

blood clot that will hopefully kill us rather than leave us with a serious

stroke and incapitation.)

Get on it girlfriend, you have all the symptoms!

Love ya,

Tracie

NS Co-owner/moderator

**************************************

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

AOL at http://www.aol.com.

[Guest guest]

T,

I remember you saying you'd fired prettypants. Good girl. My thinking is that there has to be another medical guru in town that can direct your care.

I think we should take em all out, and breath on them. The drug breath should just about do them in-- hell, I know it does me in- and it's my breath...

************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Thanks Marla, I appreciate your concern and encouragement. You know how they think your crazy every time you mention the "Sarc" word..Well, I'm really sick of it.. I've got other things in my life that I'd rather be doing than going to the doctor every day.. What makes them think that I'd want to see their ugly mugs? vanity? haha, I don't know.. If by some chance they don't allow me to lead them down the ferratin,b12,iron level road, I'll be yanking some noses and pulling them down to the paper soon enough.. Tracie, I fired Dr Pretty Pants.. my problem is my pulmonologist is in the same office with her..I had my sleep apnea doctor talk to one of the Pulmonologist that I really liked and knew she has a clue about sarc, but she didn't want to see me as a patient.. What can I do? Make an appointment anyway? You know they are all thick as theives.. haha and no I'm not paranoid, I've worked in the medical field for 25 years and I know.. they are.. Now that I'm on this side of the fence I don't know what to do about it. I went back to my local primary care physician, but he doesn't know his butt from a hole in the ground and what's worse, he'll tell ya he don't.. I had him and the hematologist fighting last Friday over my hemacrit, one says I needed a blood transfusion and the other says I don't.. I don't think I do.. I just need someone to pay attention as to what's going on ..I know I write long post.. and I'm sorry.. I'm just sick and tired of being sick and tired..

-- Re: Anemia issues

In a message dated 3/11/07 8:15:54 PM Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes:

everytime I stand up or walk to the bathroom, I'm so out of breath and my heart races and beats hard up into my head, I hate that feeling.. Good luck!

,Did they ever add the Folic Acid? If not, ask-- (demand) that they give you a script for at least 1mg a day. With our history of immunosupressive therapies-- this is one that the meds have permanently wiped out.Also-- this is also a sign of hypo or hyperthyroid. Either one can give you the heartbeat to the chest. With you being so extremely anemic-- there isn't enough redblood cells in your blood to carry oxygen anywhere! So you probably need supplemental oxygen also. Please ask for a PFT-- and have them see what your DLCO levels are. Diffusion Lung Capacity Oxygenation. This will tell them what is happening as your are trying to walk around. Chances are that even if your pulse oxygenation shows 94 or 95%, you get up to move around, and you drop to the low 80%. This would show the need for portable oxygen at all times.What happens is that as we sit around the house, our bodies have acclimated to this-- and so sitting still, we're ok. We have numbness in our extremities, and we've come to think of this as normal. It's not!It is our bodies way of salvaging the oxygen we have to keep our organs functioning, and now you want to get up and go the bathroom. Your body needs more oxygen to the extremities, and so what little bit you have- becomes immediately depleted, and you are dizzy and lightheaded. When you sit back down, you may even notice that your extremities become even more numb and tingling- burning-- as your vital organs grab the oxygen again to survive.My local pulm refuses to look at the DLCO-- and so that has put me into the place of having to have the specialist in LA instruct him. It will and is causing pulmonary hypertension-- and with oxygen supplemention-- we may be able to put off that PPH for a few more years. (It causes the lungs to need more oxygen, so the lungs make the heart pump harder and faster, and that makes the pulmonary artery have to handle increased blood pressure, and that makes the artery thicken to handle the increased blood pressure to the lungs-- and as it thickens- it narrows, and then we throw the blood clot that will hopefully kill us rather than leave us with a serious stroke and incapitation.)Get on it girlfriend, you have all the symptoms!Love ya,TracieNS Co-owner/moderator**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

,

That wasn’t

too long, I would make an appointment with the doctor you want to, chances are

she will see you, then see if she follows up with you or tells you she won’t

take you as a patient, but I would go in there with the attitude not necessarily

words, like I am paying for you to take care of me.

I am

sick and tired of dealing with quake doctors too, it makes a person crazy, so

when they try to tell us that we are crazy, just say “walk a mile in my

shoes”. I’m sure no one would take you up on that.

My husband

had the nerve to tell me that he thought maybe I was faking, not being able to

lift my leg up of the bed, I’m like right can’t you see me

struggling, then I got and mad, and he of course came back with the I was just

kidding, guess what husband dear, NOT FUNNY! See no one gets it , but

the ones going through it, so know that I care and am sending you positive

thoughts to help you go on, and I know it’s hard some days. Know you are

loved and someone cares, Marla

Marla

Bramer

" Faith

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

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of

Sent: Thursday, March 15, 2007

9:31 PM

To: Neurosarcoidosis

Subject: RE:

Anemia issues

Thanks Marla, I appreciate your concern and

encouragement. You know how they think your crazy every time you mention

the " Sarc " word..Well, I'm really sick of it.. I've got other

things in my life that I'd rather be doing than going to the doctor every

day.. What makes them think that I'd want to see their ugly mugs? vanity?

haha, I don't know.. If by some chance they don't allow me to lead them down

the ferratin,b12,iron level road, I'll be yanking some noses and

pulling them down to the paper soon enough.. Tracie, I fired Dr Pretty

Pants.. my problem is my pulmonologist is in the same office with

her..I had my sleep apnea doctor talk to one of the Pulmonologist that I

really liked and knew she has a clue about sarc, but she didn't

want to see me as a patient.. What can I do? Make an appointment

anyway? You know they are all thick as theives.. haha and no I'm not

paranoid, I've worked in the medical field for 25 years and I know.. they

are.. Now that I'm on

this side of the fence I don't know what to do about it. I went back to my

local primary care physician, but he doesn't know his butt from a hole in the

ground and what's worse, he'll tell ya he don't.. I had him and the hematologist

fighting last Friday over my hemacrit, one says I needed a blood transfusion

and the other says I don't.. I don't think I do.. I just need someone to pay

attention as to what's going on ..I know I write long post.. and I'm sorry..

I'm just sick and tired of being sick and tired..

-- Re: Anemia issues

In a message dated 3/11/07

8:15:54 PM Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes:

everytime I stand up or walk

to the bathroom, I'm so out of breath and my heart races and beats hard up

into my head, I hate that feeling.. Good luck!

,

Did they ever add the Folic Acid? If not, ask-- (demand) that they

give you a script for at least 1mg a day. With our history of

immunosupressive therapies-- this is one that the meds have permanently

wiped out.

Also-- this is also a sign of hypo or hyperthyroid. Either one can

give you the heartbeat to the chest. With you being so extremely

anemic-- there isn't enough redblood cells in your blood to carry oxygen

anywhere! So you probably need supplemental oxygen also. Please

ask for a PFT-- and have them see what your DLCO levels are.

Diffusion Lung Capacity Oxygenation. This will tell them what is

happening as your are trying to walk around. Chances are that even if

your pulse oxygenation shows 94 or 95%, you get up to move around, and you

drop to the low 80%. This would show the need for portable oxygen at

all times.

What happens is that as we sit around the house, our bodies have acclimated

to this-- and so sitting still, we're ok. We have numbness in our

extremities, and we've come to think of this as normal. It's not!

It is our bodies way of salvaging the oxygen we have to keep our organs

functioning, and now you want to get up and go the bathroom. Your

body needs more oxygen to the extremities, and so what little bit you have-

becomes immediately depleted, and you are dizzy and lightheaded.

When you sit back down, you may even notice that your extremities become

even more numb and tingling- burning-- as your vital organs grab the oxygen

again to survive.

My local pulm refuses to look at the DLCO-- and so that has put me into the

place of having to have the specialist in LA instruct him. It will

and is causing pulmonary hypertension-- and with oxygen supplemention--

we may be able to put off that PPH for a few more years. (It causes

the lungs to need more oxygen, so the lungs make the heart pump harder and

faster, and that makes the pulmonary artery have to handle increased blood

pressure, and that makes the artery thicken to handle the increased blood

pressure to the lungs-- and as it thickens- it narrows, and then we throw

the blood clot that will hopefully kill us rather than leave us with a

serious stroke and incapitation.)

Get on it girlfriend, you have all the symptoms!

Love ya,

Tracie

NS Co-owner/moderator

**************************************

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

AOL at http://www.aol.com.

[Guest guest]

Well Marla, I've thought about that..and I do need to see a pulmonologist soon..as my shortness of breath has gotten worst.. My old one only does a chest xray and pft's yearly, no matter how much I tell him I'm having intermittent wheezing,and increase shortness of breath.. He just looks at me like a deer in headlights..and says I'll see you in 6 months, I'm guessing this is a social visit as he doesn't do anything else..

I gather that your hubby hasn't said anything remotely like he did about your leg again, did he? That's when it hurts the most when people that see you daily, see you struggling, and then they make a smart butt remark like that.. I would have had my hands around his juggular... but that's why I'm 50 and single..haha Anyway, I thank you for your note, I know you guys care.. I get it..I guess we can look at ourselves as ones of the chosen few..but in a different way..

Thanks again.. Hugs,

-- Re: Anemia issues

In a message dated 3/11/07 8:15:54 PM Pacific Standard Time, topdat (AT) bellsouth (DOT) net writes:

everytime I stand up or walk to the bathroom, I'm so out of breath and my heart races and beats hard up into my head, I hate that feeling.. Good luck!

,Did they ever add the Folic Acid? If not, ask-- (demand) that they give you a script for at least 1mg a day. With our history of immunosupressive therapies-- this is one that the meds have permanently wiped out.Also-- this is also a sign of hypo or hyperthyroid. Either one can give you the heartbeat to the chest. With you being so extremely anemic-- there isn't enough redblood cells in your blood to carry oxygen anywhere! So you probably need supplemental oxygen also. Please ask for a PFT-- and have them see what your DLCO levels are. Diffusion Lung Capacity Oxygenation. This will tell them what is happening as your are trying to walk around. Chances are that even if your pulse oxygenation shows 94 or 95%, you get up to move around, and you drop to the low 80%. This would show the need for portable oxygen at all times.What happens is that as we sit around the house, our bodies have acclimated to this-- and so sitting still, we're ok. We have numbness in our extremities, and we've come to think of this as normal. It's not!It is our bodies way of salvaging the oxygen we have to keep our organs functioning, and now you want to get up and go the bathroom. Your body needs more oxygen to the extremities, and so what little bit you have- becomes immediately depleted, and you are dizzy and lightheaded. When you sit back down, you may even notice that your extremities become even more numb and tingling- burning-- as your vital organs grab the oxygen again to survive.My local pulm refuses to look at the DLCO-- and so that has put me into the place of having to have the specialist in LA instruct him. It will and is causing pulmonary hypertension-- and with oxygen supplemention-- we may be able to put off that PPH for a few more years. (It causes the lungs to need more oxygen, so the lungs make the heart pump harder and faster, and that makes the pulmonary artery have to handle increased blood pressure, and that makes the artery thicken to handle the increased blood pressure to the lungs-- and as it thickens- it narrows, and then we throw the blood clot that will hopefully kill us rather than leave us with a serious stroke and incapitation.)Get on it girlfriend, you have all the symptoms!Love ya,TracieNS Co-owner/moderator**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.