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

[Guest guest]

Hi Cheryl,

First, let me welcome you to our "family". I am sorry you had to find us under these circumstances but glad that you did find us. We are a family of nearly 600 members and many are very knowledgeable and willing to help. Just ask questions and someone will get back to you. One thing we ask is to be patient..........we are all sick here, including the owners and moderators and we might not be able to answer you for a day or two, but we WILL answer you. We have lots of info in the FILES section and the ARCHIVES has lots of good info. I am working now to clear out the old, unnecessary files so it will be easier and quicker to find answers.

Greg has given you some good advice and I thank you for that, Greg!

Like I said, there are many willing to help....:-) At the present time, my Co-Owner, Tracie, is ill and taking a few days away to try and get better. She is very knowledgeable in this with a medical background. I am the other Co-Owner (Darlene). We have Rose, , Debbie, and Myra as active Moderators and they are a big help. Please feel free to ask questions and we will try to help as quickly as we can.

Again, welcome...............

Hugs,

Darlene

NS Co-Owner/Moderator

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)>

[Guest guest]

Cheryl, I would definitely request a chest xray; probably don't need a CT unless the xray is questionable. Serum ACE level is helpful; it doesn't specifically diagnose sarc, but if it's elevated shows inflammation somewhere. Warning: if it's normal it doesn't rule out sarc, but most docs don't know or believe this. What kind of PCP do you have (family practice, internal medicine, etc.)? I can't believe a doctor who asks "What is it about this (hypoxia) that bothers you?" Sounds like a bozo to me. When you say a specialist told you to focus on this mystery, what kind of specialist is that? Are you seeing a pulmonologist, sleep disorder specialist, hematologist? Pulmonologists are actually more familiar with sarc than many docs, because so many sarc patients have pulmonary involvement. Unfortunately, many of them are still in the dark ages as far as treatment options. But a pulmonologist should be able to order the appropriate tests. I would try to get those lymph nodes biopsied. The most commonly enlarged lymph nodes in sarc are the hilar nodes in the chest, but not the only ones. My former daughter-in-law had enlarged glands in her neck that biopsied for sarc. At that time I found out that she had been having problems with uveitis (eye infection) for months. I told her to call her eye doc & tell her about the sarc biopsy & they immediately put her on short course oral Prednisone, which cleared up her eyes. So sarc is a sneaky disease, with no one test that says, Yep, it's sarc. It takes a doctor willing to get a thorough history, try to look at the big picture & realize that some unrelated symptoms may actually be related. I hope that you don't have sarc, but if you do, you need to assemble a medical team that knows what they are doing or are willing to learn.

One place to go for info on sarc in general, along with specifics on different organ systems, is FSR (Foundation for Sarcoidosis Research) at www.stopsarcoidosis.org. I hope this gives you some ideas.

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: arney@...Date: Sun, 28 Jun 2009 18:57:16 -0400Subject: Re: Re: Respiratory acidosis,,,,Sarcoidosis? Pulmonary fibrosis?

Hi Cheryl,

First, let me welcome you to our "family". I am sorry you had to find us under these circumstances but glad that you did find us. We are a family of nearly 600 members and many are very knowledgeable and willing to help. Just ask questions and someone will get back to you. One thing we ask is to be patient..........we are all sick here, including the owners and moderators and we might not be able to answer you for a day or two, but we WILL answer you. We have lots of info in the FILES section and the ARCHIVES has lots of good info. I am working now to clear out the old, unnecessary files so it will be easier and quicker to find answers.

Greg has given you some good advice and I thank you for that, Greg!

Like I said, there are many willing to help....:-) At the present time, my Co-Owner, Tracie, is ill and taking a few days away to try and get better. She is very knowledgeable in this with a medical background. I am the other Co-Owner (Darlene). We have Rose, , Debbie, and Myra as active Moderators and they are a big help. Please feel free to ask questions and we will try to help as quickly as we can.

Again, welcome...............

Hugs,

Darlene

NS Co-Owner/Moderator

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)>

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[Guest guest]

Darlene -Thank you for the kind welcome! So many other conditions, including chronic pain, a very aggressive psoriatic arthritis, fibromyalgia, and a myriad of other medical problems already, so I totally understand how we all come and go on this wonderful listserv communities. I can be patient!! This kind of support community can be very supportive, as I know from my FM and PsA online support groups. They are true blessings to all of us and I was thrilled to find a group that could help in this situation.I am following up and making a list for when I can see/talk/discuss with my PCP when he returns to the office. There is great information in the responses I have rec'd so far. I appreciate that individuals are taking the time to respond. It is very supportive and useful,

given my situation. Please tell Tracie to take it easy and focus on taking care of herself. It cannot be easy! Life!!!! Sometimes there are simply TOO MANY lemons!!Cheryl M (AK)To: Neurosarcoidosis Sent: Sunday, June 28, 2009 2:57:16 PMSubject: Re: Re: Respiratory acidosis,,,,Sarcoidosis? Pulmonary fibrosis?

Hi Cheryl,

First, let me welcome you to our "family". I am sorry you had to find us under these circumstances but glad that you did find us. We are a family of nearly 600 members and many are very knowledgeable and willing to help. Just ask questions and someone will get back to you. One thing we ask is to be patient..... .....we are all sick here, including the owners and moderators and we might not be able to answer you for a day or two, but we WILL answer you. We have lots of info in the FILES section and the ARCHIVES has lots of good info. I am working now to clear out the old, unnecessary files so it will be easier and quicker to find answers.

Greg has given you some good advice and I thank you for that, Greg!

Like I said, there are many willing to help....:-) At the present time, my Co-Owner, Tracie, is ill and taking a few days away to try and get better. She is very knowledgeable in this with a medical background. I am the other Co-Owner (Darlene). We have Rose, , Debbie, and Myra as active Moderators and they are a big help. Please feel free to ask questions and we will try to help as quickly as we can.

Again, welcome..... ......... .

Hugs,

Darlene

NS Co-Owner/Moderator

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)>