Respiratory acidosis,,,,Sarcoidosis? Pulmonary fibrosis?

[Guest guest]

I just signed up to this group in an effort to understand more about sarcoidosis

and its possible implications in my respiratory issue, if any. What type of

physician did you have to seek out? What kinds of testing did you have to go

through?

I have both central and obstructive sleep apnea, psoraisis and psoriatic

arthritis, fibromyalgia, and the list goes on. My most recent blood gases

indicated, once again, that I do not take in enough O2 and I do not get rid of

enough carbon dioxide. The response form my PCP is " What is it about this that

bothers you? " First and foremost, perhaps the fact that the specialist that gave

me the results told me point blank that this is the next mystery I should be

focusing on and tackling!! Then, of course, there is the not being able to stay

awake, total fatigue and exhaustion after an hour of waking up and doing nothing

more than watch TV in bed.

In researching and speaking with other medical professionals, my low neutrophils

mean I do not have 100% what I should for righting infection, but that could be

the autoimmune and meds. Monocytes have been high on every blood test taken for

as long as I can recall in the past five years, which means my bone marrow is

working extra hard to kick out those good blood cells - and most likely because

of the respiratory acidosis (which is based on my blood gases) and there the

need for high need of red blood cells - hence why it is high. I could have an

infectious and /or rheumatologic (which includes sarcoid) causing the symptoms.

I have already asked for a chest xray. It has also been recommended that I

request a chest CT. Are there other tests I should be asking for?

I am really hopeful that, like other grouplists I belong to, there are some

pretty savvy folks here that can help me sort this out!!

Thank you.

Cheryl M (in Alaska)

[Guest guest]

cmoralez_ak,

First of all so sorry you had to find us. But let me asure you the people and

moderators are like family here. I welcome you to the group. I am sure the more

experciene members will more then likely answer your questions better then I.

Another test you might seek is thyroid biopsys this will tell you for sure if

you have sarcoidosis in your systems. As for Doctors, I have Neurosarcoidosis,

mine is in the nervous system and brain. I suggest a good Internal Med Doc, a

Neurologist Doc, a Plumonugy Doc. and maybe a Rhemutologist Doc.

I have all of these and they seem to be helping me get this under control tho I

still have bad days now and then. I wish you the best abd check back often for

you will get more advise from those who Plum sarcoidosis.

Greg aka Krumdawg in Texas

-- In Neurosarcoidosis , " cmoralez_ak " wrote:

>

> I just signed up to this group in an effort to understand more about

sarcoidosis and its possible implications in my respiratory issue, if any. What

type of physician did you have to seek out? What kinds of testing did you have

to go through?

>

> I have both central and obstructive sleep apnea, psoraisis and psoriatic

arthritis, fibromyalgia, and the list goes on. My most recent blood gases

indicated, once again, that I do not take in enough O2 and I do not get rid of

enough carbon dioxide. The response form my PCP is " What is it about this that

bothers you? " First and foremost, perhaps the fact that the specialist that gave

me the results told me point blank that this is the next mystery I should be

focusing on and tackling!! Then, of course, there is the not being able to stay

awake, total fatigue and exhaustion after an hour of waking up and doing nothing

more than watch TV in bed.

>

> In researching and speaking with other medical professionals, my low

neutrophils mean I do not have 100% what I should for righting infection, but

that could be the autoimmune and meds. Monocytes have been high on every blood

test taken for as long as I can recall in the past five years, which means my

bone marrow is working extra hard to kick out those good blood cells - and most

likely because of the respiratory acidosis (which is based on my blood gases)

and there the need for high need of red blood cells - hence why it is high. I

could have an infectious and /or rheumatologic (which includes sarcoid) causing

the symptoms.

>

> I have already asked for a chest xray. It has also been recommended that I

request a chest CT. Are there other tests I should be asking for?

> I am really hopeful that, like other grouplists I belong to, there are some

pretty savvy folks here that can help me sort this out!!

>

> Thank you.

>

> Cheryl M (in Alaska)

>

[Guest guest]

Correction I was tired when typing this note. Lymph node Biopsy and not Thyroid. It should show up on a chest x-ray if the lymph nodes are involved.

I do hope that you do not have Sarcoidosis and you do have something that is curable.

May your days be pain free

Greg

From: gregorykrumme

Sent: Saturday, June 27, 2009 7:52 PM

To: Neurosarcoidosis

Subject: Re: Respiratory acidosis,,,,Sarcoidosis? Pulmonary fibrosis?

cmoralez_ak,First of all so sorry you had to find us. But let me asure you the people and moderators are like family here. I welcome you to the group. I am sure the more experciene members will more then likely answer your questions better then I. Another test you might seek is thyroid biopsys this will tell you for sure if you have sarcoidosis in your systems. As for Doctors, I have Neurosarcoidosis, mine is in the nervous system and brain. I suggest a good Internal Med Doc, a Neurologist Doc, a Plumonugy Doc. and maybe a Rhemutologist Doc.I have all of these and they seem to be helping me get this under control tho I still have bad days now and then. I wish you the best abd check back often for you will get more advise from those who Plum sarcoidosis. Greg aka Krumdawg in Texas-- In Neurosarcoidosis , "cmoralez_ak" wrote:>> I just signed up to this group in an effort to understand more about sarcoidosis and its possible implications in my respiratory issue, if any. What type of physician did you have to seek out? What kinds of testing did you have to go through?> > I have both central and obstructive sleep apnea, psoraisis and psoriatic arthritis, fibromyalgia, and the list goes on. My most recent blood gases indicated, once again, that I do not take in enough O2 and I do not get rid of enough carbon dioxide. The response form my PCP is "What is it about this that bothers you?" First and foremost, perhaps the fact that the specialist that gave me the results told me point blank that this is the next mystery I should be focusing on and tackling!! Then, of course, there is the not being able to stay awake, total fatigue and exhaustion after an hour of waking up and doing nothing more than watch TV in bed.> > In researching and speaking with other medical professionals, my low neutrophils mean I do not have 100% what I should for righting infection, but that could be the autoimmune and meds. Monocytes have been high on every blood test taken for as long as I can recall in the past five years, which means my bone marrow is working extra hard to kick out those good blood cells - and most likely because of the respiratory acidosis (which is based on my blood gases) and there the need for high need of red blood cells - hence why it is high. I could have an infectious and /or rheumatologic (which includes sarcoid) causing the symptoms. > > I have already asked for a chest xray. It has also been recommended that I request a chest CT. Are there other tests I should be asking for?> I am really hopeful that, like other grouplists I belong to, there are some pretty savvy folks here that can help me sort this out!!> > Thank you.> > Cheryl M (in Alaska)>

[Guest guest]

Greg - Thank you for taking the time to reply w/such great info. It is very interesting to hear you reference the lymph nodes. It was the lymph nodes in my L elbow that swelled four yrs ago into a massive infectious cyst, then Strep A in my bloodstream and sepsis that very nearly killed me. My elbow lyphs are always lumpy and swollen, but b/c no cyst has presented, I monitor, but none of my doctors seem concerned at all. It would be nice to understand this better and perhaps a biopsy would be just the test to enlighten...Thanks again,Cheryl M (AK)To: Neurosarcoidosis Sent: Saturday, June 27, 2009 8:24:22 PMSubject: Re: Re: Respiratory acidosis,,,,Sarcoidosis? Pulmonary fibrosis?

Correction I was tired when typing this note. Lymph node Biopsy and not Thyroid. It should show up on a chest x-ray if the lymph nodes are involved.

I do hope that you do not have Sarcoidosis and you do have something that is curable.

May your days be pain free

Greg

From: gregorykrumme

Sent: Saturday, June 27, 2009 7:52 PM

To: Neurosarcoidosis@ yahoogroups. com

Subject: Re: Respiratory acidosis,,,, Sarcoidosis? Pulmonary fibrosis?

cmoralez_ak,First of all so sorry you had to find us. But let me asure you the people and moderators are like family here. I welcome you to the group. I am sure the more experciene members will more then likely answer your questions better then I. Another test you might seek is thyroid biopsys this will tell you for sure if you have sarcoidosis in your systems. As for Doctors, I have Neurosarcoidosis, mine is in the nervous system and brain. I suggest a good Internal Med Doc, a Neurologist Doc, a Plumonugy Doc. and maybe a Rhemutologist Doc.I have all of these and they seem to be helping me get this under control tho I still have bad days now and then. I wish you the best abd check back often for you will get more advise from those who Plum sarcoidosis. Greg aka Krumdawg in Texas-- In Neurosarcoidosis@ yahoogroups. com, "cmoralez_ak" <cmoralez_ak@ ...> wrote:>> I just signed up to this group in an effort to understand more about sarcoidosis and its possible implications in my respiratory issue, if any. What type of physician did you have to seek out? What kinds of testing did you have to go through?> > I have both central and obstructive sleep apnea, psoraisis and psoriatic arthritis, fibromyalgia, and the list goes on. My most recent blood gases indicated, once again, that I do not take in enough O2 and I do not get rid of enough carbon dioxide. The response form my PCP is "What is it about this that bothers you?" First and foremost, perhaps the fact that the specialist that gave me the results told me point blank that this is the next mystery I should be focusing on and tackling!! Then, of course, there is the not being able to stay awake, total fatigue and exhaustion after an hour of waking up and doing nothing more than watch TV in bed.> > In researching and speaking with other medical professionals, my low neutrophils mean I do not have 100% what I should for righting infection, but that could be the autoimmune and meds. Monocytes have been high on every blood test taken for as long as I can recall in the past five years, which means my bone marrow is working extra hard to kick out those good blood cells - and most likely because of the respiratory acidosis (which is based on my blood gases) and there the need for high need of red blood cells - hence why it is high. I could have an infectious and /or rheumatologic (which includes sarcoid) causing the symptoms. > > I have already asked for a chest xray. It has also been recommended that I request a chest CT. Are there other tests I should be asking for?> I am really hopeful that, like other grouplists I belong to, there are some pretty savvy folks here that can help me sort this out!!> > Thank you.> > Cheryl M (in Alaska)>