Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Hi ! You are very observant for someone so scilly! Yes the ctd has been suspected mostly since I moved down here to NC. As much as I believe I received really good care while I was in NY the ctd/autoimmune issue was just not really investigated until I came down here to Duke University. The doctors at Duke, first my pulmodude and now the rheumy were all over my 'mechanic hand' rash and the somewhat minor irregularities in my bloodwork. These little things have gradually increased over the last year. Now I have a similar 'rash' on my upper eyelids, across my browbone. I've got some increasing muscle weakness and more fatigue than I've had in the past. They are confident of the dm diagnosis but in January they are going to biopsy the rash on my hands and most likely a muscle biopsy to confirm. So far I'm not doing anything different, though those days may be numbered. Both pulmo and rheumy docs have suggested Cytoxan to start with. I'm extremely reluctant to go down that road. It's an ugly drug and it's not something I want to cope with unless I absolutely have to. Especially since I still feel relatively well most of the time. The whole discussion has been put off until after the holidays and the doctors know that I want alternatives when I see them next. It's funny but I would not have predicted the odd sense of relief I feel at this diagnosis. It just explains so many things, not the least of which is why do I have this blasted lung disease. I have a huge need for things to make sense, this diagnosis just helps me make sense of the whole mess. Does that make sense? I'd best be on my way this morning. In a little while I'm picking up my nieces and we are going to the planetarium in Chapel Hill to see a show all about the star of Bethlehem. After that we're going to buy Aunt Mare a Christmas tree. They are very excited and by the end of the day I'll be exhausted but happy! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Friday, December 12, 2008 8:54:22 PMSubject: Beth Dermatomyositis Hey Beth... I've just realised you have put 'Dermatomyositis' in your Diagnosis line.....I must've missed that Post... last I remember you were 'suspected' of a CTD but not yet confirmed... . Has the official diagnosis changed anything for you by way of tretment options or change of course in any other way ( ie YOUR respoinse to now understanding more about whatis happening to your body or other stuff??????? GIO In Breathe-Support@ yahoogroups. com, Beth wrote:>> Sher,> A rheumatologist treats many diseases and disorders. Arthritis and fibromyalgia are two of them and various other conditions of the joints, muscles and bones. They treat many auto-immune disorders, including lupus, polymyositis and dermatomysitis among them. At Duke the pulmonary clinic and rheumatology clinic are side by side and the doctors work very closely together. This is because so many of the diseases that a rheumatologist treats are implicated in causing long term lung damage such as various interstitial lung diseases like mine.> The answer to your other question is a pulmonologist can indeed diagnose these conditions but a rheumatologist specializes in them. I wouldn't go to just my pcp to be diagnosed and treated for my lung disease. (As a matter of fact my pcp in NY misdiagnosed my lung problems for over a year) I want a specialist for my connective tissue disease also. > Hope that helps clarify things a bit!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." > Dr. Seuss> > > > > ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Friday, December 12, 2008 7:11:03 PM> Subject: Re: Re: Tom Terrill / lung transplants> > > Bruce... so a Rheumatologist is the one to dx a connective tissue disease? Wonder why a pulmodude or dudette could not do that as well, or a pcp?> Reason I ask: I'm seeing a Rheumy re: my arthritis/fibromyal gia. Thought of you (and others) who go for different reasons. Hence the question. > MamaSher, age 70. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Re: Tom Terrill / lung transplants> > > Sher> > The doctor at the University of Chicago felt I probably had an> underlying connective tissue disease such as Undifferentiated Connective> Tissue Disease or Polymyositis. Earlier doctors had not felt so. So, I> went to a rheumatologist. I have many indications of a connective tissue> disease but so far he doesn't feel it warrants him making such a> diagnosis. Neither does the second opinion rheumatologist he referred me> to. So, so far, no connective tissue disease diagnosed but who knows if> one will surface at some point.> > > > >> > > Hi,> > > I just had to pipe in about Tom Terrill as he is on our Board of> > > Directors and is a friend of mine. He's doing pheonomenally well> > > after transplant. He came out to our support group and gave the> > > members hope. And as the discussion is going, different hospitals> > > have different criteria for lung transplantations. Just because> you've> > > been turned down at one doesn't mean another hospital will accept> you.> > > A good website to check out is www.unos.org. The website has a lot> of> > > valuable information on lung transplantation. Another one of our> > > Board members had a transplant last year @ age 71 at the University> of> > > land. He is also doing very very well. Keep the faith. Don't> give> > > up.> > >> > > Leanne> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Beth is the Dermatomyositis more than just dermatitis? what does "myositis" mean? as upsetting as a new diagnosis is, it can be a relief to finally know what is happening I certainly hope there is treatment for it, that will either control it or relieve the symptoms Pink Joyce IPF 3/06 Pennsylvania Donate Life>> Sher,> A rheumatologist treats many diseases and disorders. Arthritis and fibromyalgia are two of them and various other conditions of the joints, muscles and bones. They treat many auto-immune disorders, including lupus, polymyositis and dermatomysitis among them. At Duke the pulmonary clinic and rheumatology clinic are side by side and the doctors work very closely together. This is because so many of the diseases that a rheumatologist treats are implicated in causing long term lung damage such as various interstitial lung diseases like mine.> The answer to your other question is a pulmonologist can indeed diagnose these conditions but a rheumatologist specializes in them. I wouldn't go to just my pcp to be diagnosed and treated for my lung disease. (As a matter of fact my pcp in NY misdiagnosed my lung problems for over a year) I want a specialist for my connective tissue disease also. > Hope that helps clarify things a bit!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." > Dr. Seuss> > > > > ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Friday, December 12, 2008 7:11:03 PM> Subject: Re: Re: Tom Terrill / lung transplants> > > Bruce... so a Rheumatologist is the one to dx a connective tissue disease? Wonder why a pulmodude or dudette could not do that as well, or a pcp?> Reason I ask: I'm seeing a Rheumy re: my arthritis/fibromyal gia. Thought of you (and others) who go for different reasons. Hence the question. > MamaSher, age 70. IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Re: Tom Terrill / lung transplants> > > Sher> > The doctor at the University of Chicago felt I probably had an> underlying connective tissue disease such as Undifferentiated Connective> Tissue Disease or Polymyositis. Earlier doctors had not felt so. So, I> went to a rheumatologist. I have many indications of a connective tissue> disease but so far he doesn't feel it warrants him making such a> diagnosis. Neither does the second opinion rheumatologist he referred me> to. So, so far, no connective tissue disease diagnosed but who knows if> one will surface at some point.> > > > >> > > Hi,> > > I just had to pipe in about Tom Terrill as he is on our Board of> > > Directors and is a friend of mine. He's doing pheonomenally well> > > after transplant. He came out to our support group and gave the> > > members hope. And as the discussion is going, different hospitals> > > have different criteria for lung transplantations. Just because> you've> > > been turned down at one doesn't mean another hospital will accept> you.> > > A good website to check out is www.unos.org. The website has a lot> of> > > valuable information on lung transplantation. Another one of our> > > Board members had a transplant last year @ age 71 at the University> of> > > land. He is also doing very very well. Keep the faith. Don't> give> > > up.> > >> > > Leanne> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Joyce Myositis is a general term for swelling of the muscles. Within the broad category of Myositis, one group is referred to as Inflammatory Myopathies. This includes Dermatomyositis, Polymyositis, Inclusion-Body Myositis and Juvenile Myositis. These diseases cause swelling and loss of muscle. They are also called idiopathic inflammatory myopathies. The two we hear most of are Dermatomyositis and Polymyositis. We have several members here with them. I was suspected of possibly having Polymyositis, but that has not been confirmed to this point, so I'm still sitting more where MB was before. Inflammatory myopathies are thought to be autoimmune diseases, meaning the body's immune system, which normally fights infections and viruses, is misdirected and attacks the body's own normal, healthy tissue through inflammation, or swelling. All of these diseases can cause muscle weakness, but each type is different. DM (Dermatomyositis) is the easiest type of myositis to diagnose because of the skin rash which is often seen before any muscle weakness is felt. The DM rash looks patchy, dusky, and reddish or purple. It is found on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles. Some people also have hardened bumps under the skin, called calcinosis. The skin rash and weak muscles are caused by inflammation, or swelling, in the blood vessels under the skin and in the muscles, also called vasculitis. Patients who have the skin rash but feel no muscle weakness have amyopathic DM, or DM sine myositis.The weakness begins with muscles that are closest to and within the trunk of the body. Neck, hip, back and shoulder muscles are examples. Some DM patients have muscle pain.Signs and symptomsSigns Appearance of a rash on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles Scaly, dry or rough skin Trouble rising from a seated position, or getting up after a fall General tiredness Symptoms Painful and/or itchy rash caused by inflammation of blood vessels under the skin and in the muscles Sudden or progressive weakness in muscles in neck, hip, back and shoulder muscles Difficulty swallowing (dysphagia), a feeling of choking Hardened lumps or sheets of calcium, called calcinosis, under the skin Changes in voice (dysphonia), especially hoarseness > > > >> > > > Hi,> > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > after transplant. He came out to our support group and gave the> > > > members hope. And as the discussion is going, different hospitals> > > > have different criteria for lung transplantations. Just because> > you've> > > > been turned down at one doesn't mean another hospital will accept> > you.> > > > A good website to check out is www.unos.org. The website has a lot> > of> > > > valuable information on lung transplantation. Another one of our> > > > Board members had a transplant last year @ age 71 at the University> > of> > > > land. He is also doing very very well. Keep the faith. Don't> > give> > > > up.> > > >> > > > Leanne> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Bruce/MB ... I'll add in here that I'm going to see a rheumydude. My gastro dr suggested it, because there is NOTHING on x-rays, cscans, or endoscopy that explains the pain I went through not too long ago in my gut. ER twice in 3 days for pain that was a 15! No cause found. Gastro thinks it's fibromyalgia or deep muscle pain...I'm not sure I agree 'cause the discomfort is always in the same place and reoccurring. But, he's the doc so I will go. I also have trouble swallowing and do frequently choke. On liquids, food or even my own saliva. Also have changes in voice...especially hoarseness. I also have these hardened lumps under the skin on my right arm. Now I'm thinking right now, this is all coincidental. I have had blood checks previously to ck for autoimmune but they are always ok. At any rate, I thank you both for the info! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Beth Dermatomyositis Joyce Myositis is a general term for swelling of the muscles. Within the broad category of Myositis, one group is referred to as Inflammatory Myopathies. This includes Dermatomyositis, Polymyositis, Inclusion-Body Myositis and Juvenile Myositis. These diseases cause swelling and loss of muscle. They are also called idiopathic inflammatory myopathies. The two we hear most of are Dermatomyositis and Polymyositis. We have several members here with them. I was suspected of possibly having Polymyositis, but that has not been confirmed to this point, so I'm still sitting more where MB was before. Inflammatory myopathies are thought to be autoimmune diseases, meaning the body's immune system, which normally fights infections and viruses, is misdirected and attacks the body's own normal, healthy tissue through inflammation, or swelling. All of these diseases can cause muscle weakness, but each type is different. DM (Dermatomyositis) is the easiest type of myositis to diagnose because of the skin rash which is often seen before any muscle weakness is felt. The DM rash looks patchy, dusky, and reddish or purple. It is found on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles. Some people also have hardened bumps under the skin, called calcinosis. The skin rash and weak muscles are caused by inflammation, or swelling, in the blood vessels under the skin and in the muscles, also called vasculitis. Patients who have the skin rash but feel no muscle weakness have amyopathic DM, or DM sine myositis.The weakness begins with muscles that are closest to and within the trunk of the body. Neck, hip, back and shoulder muscles are examples. Some DM patients have muscle pain.Signs and symptomsSigns Appearance of a rash on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles Scaly, dry or rough skin Trouble rising from a seated position, or getting up after a fall General tiredness Symptoms Painful and/or itchy rash caused by inflammation of blood vessels under the skin and in the muscles Sudden or progressive weakness in muscles in neck, hip, back and shoulder muscles Difficulty swallowing (dysphagia), a feeling of choking Hardened lumps or sheets of calcium, called calcinosis, under the skin Changes in voice (dysphonia), especially hoarseness > > > >> > > > Hi,> > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > after transplant. He came out to our support group and gave the> > > > members hope. And as the discussion is going, different hospitals> > > > have different criteria for lung transplantations. Just because> > you've> > > > been turned down at one doesn't mean another hospital will accept> > you.> > > > A good website to check out is www.unos.org. The website has a lot> > of> > > > valuable information on lung transplantation. Another one of our> > > > Board members had a transplant last year @ age 71 at the University> > of> > > > land. He is also doing very very well. Keep the faith. Don't> > give> > > > up.> > > >> > > > Leanne> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Sher The blood checks to check for autoimmune can be so extensive. 90% of the time they really just look for Lupus and maybe RA. A rheumatologist checks many more things. Also, they check symptoms. Now, most of the blood tests can be out of range for many other reasons too. Thats what makes it so complicated. I have a long list of reasons to conclude I have a connective tissue disease but then they just can't do so. I imagine thats the way it was with MB until just now. A rheumatologist will at least be more expert in the area and can deal with your known conditions while determining if they might be the cause of your pain. > > > > > > > > > > Hi, > > > > > I just had to pipe in about Tom Terrill as he is on our Board of > > > > > Directors and is a friend of mine. He's doing pheonomenally well > > > > > after transplant. He came out to our support group and gave the > > > > > members hope. And as the discussion is going, different hospitals > > > > > have different criteria for lung transplantations. Just because > > > you've > > > > > been turned down at one doesn't mean another hospital will accept > > > you. > > > > > A good website to check out is www.unos.org. The website has a lot > > > of > > > > > valuable information on lung transplantation. Another one of our > > > > > Board members had a transplant last year @ age 71 at the University > > > of > > > > > land. He is also doing very very well. Keep the faith. Don't > > > give > > > > > up. > > > > > > > > > > Leanne > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Sher The blood checks to check for autoimmune can be so extensive. 90% of the time they really just look for Lupus and maybe RA. A rheumatologist checks many more things. Also, they check symptoms. Now, most of the blood tests can be out of range for many other reasons too. Thats what makes it so complicated. I have a long list of reasons to conclude I have a connective tissue disease but then they just can't do so. I imagine thats the way it was with MB until just now. A rheumatologist will at least be more expert in the area and can deal with your known conditions while determining if they might be the cause of your pain. > > > > > > > > > > Hi, > > > > > I just had to pipe in about Tom Terrill as he is on our Board of > > > > > Directors and is a friend of mine. He's doing pheonomenally well > > > > > after transplant. He came out to our support group and gave the > > > > > members hope. And as the discussion is going, different hospitals > > > > > have different criteria for lung transplantations. Just because > > > you've > > > > > been turned down at one doesn't mean another hospital will accept > > > you. > > > > > A good website to check out is www.unos.org. The website has a lot > > > of > > > > > valuable information on lung transplantation. Another one of our > > > > > Board members had a transplant last year @ age 71 at the University > > > of > > > > > land. He is also doing very very well. Keep the faith. Don't > > > give > > > > > up. > > > > > > > > > > Leanne > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Sher The blood checks to check for autoimmune can be so extensive. 90% of the time they really just look for Lupus and maybe RA. A rheumatologist checks many more things. Also, they check symptoms. Now, most of the blood tests can be out of range for many other reasons too. Thats what makes it so complicated. I have a long list of reasons to conclude I have a connective tissue disease but then they just can't do so. I imagine thats the way it was with MB until just now. A rheumatologist will at least be more expert in the area and can deal with your known conditions while determining if they might be the cause of your pain. > > > > > > > > > > Hi, > > > > > I just had to pipe in about Tom Terrill as he is on our Board of > > > > > Directors and is a friend of mine. He's doing pheonomenally well > > > > > after transplant. He came out to our support group and gave the > > > > > members hope. And as the discussion is going, different hospitals > > > > > have different criteria for lung transplantations. Just because > > > you've > > > > > been turned down at one doesn't mean another hospital will accept > > > you. > > > > > A good website to check out is www.unos.org. The website has a lot > > > of > > > > > valuable information on lung transplantation. Another one of our > > > > > Board members had a transplant last year @ age 71 at the University > > > of > > > > > land. He is also doing very very well. Keep the faith. Don't > > > give > > > > > up. > > > > > > > > > > Leanne > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Bruce ... yes, usually it's a ck for RA or Lupus. I have neither Thank God! My grandmother, her sister and my mother all had Lupus/RA. In fact, here's a tiny bit of useless knowledge...my grandmother and her sister were written up in AMJ (American Med Journal) as the first known (sisters in this case) family with more than one w/L. Ye gads that must have been back in the 40s maybe. We shall see what we shall see. I'm getting all the appropriate records faxed to the rheumydude now. Have an appt on the 22nd of Dec. I so appreciate what I learn here on the board. I will go in my more knowledgeable now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Beth Dermatomyositis SherThe blood checks to check for autoimmune can be so extensive. 90% of thetime they really just look for Lupus and maybe RA. A rheumatologistchecks many more things. Also, they check symptoms. Now, most of theblood tests can be out of range for many other reasons too. Thats whatmakes it so complicated. I have a long list of reasons to conclude Ihave a connective tissue disease but then they just can't do so. Iimagine thats the way it was with MB until just now. A rheumatologistwill at least be more expert in the area and can deal with your knownconditions while determining if they might be the cause of your pain.> > > > >> > > > > Hi,> > > > > I just had to pipe in about Tom Terrill as he is on our Boardof> > > > > Directors and is a friend of mine. He's doing pheonomenallywell> > > > > after transplant. He came out to our support group and gavethe> > > > > members hope. And as the discussion is going, differenthospitals> > > > > have different criteria for lung transplantations. Justbecause> > > you've> > > > > been turned down at one doesn't mean another hospital willaccept> > > you.> > > > > A good website to check out is www.unos.org. The website has alot> > > of> > > > > valuable information on lung transplantation. Another one ofour> > > > > Board members had a transplant last year @ age 71 at theUniversity> > > of> > > > > land. He is also doing very very well. Keep the faith.Don't> > > give> > > > > up.> > > > >> > > > > Leanne> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Sher, I'm just going to put 2 cents in here and you take it for what it's worth. The symptoms you describe are symptoms often associated with dermatomyositis. The hoarseness, difficulty swallowing and frequent choking, muscle pain and weakness, hardened calcium deposits under the skin, even sometimes gastrointestinal upsets and disturbances. Since you've already decided to consult a rheumatologist, these are symptoms of which you want to make him aware. The list of things you described in your email made that little bell in my head go off. Just something you might want to think about. Love, Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Saturday, December 13, 2008 12:23:41 PMSubject: Re: Re: Beth Dermatomyositis Bruce/MB ... I'll add in here that I'm going to see a rheumydude. My gastro dr suggested it, because there is NOTHING on x-rays, cscans, or endoscopy that explains the pain I went through not too long ago in my gut. ER twice in 3 days for pain that was a 15! No cause found. Gastro thinks it's fibromyalgia or deep muscle pain...I'm not sure I agree 'cause the discomfort is always in the same place and reoccurring. But, he's the doc so I will go. I also have trouble swallowing and do frequently choke. On liquids, food or even my own saliva. Also have changes in voice...especially hoarseness. I also have these hardened lumps under the skin on my right arm. Now I'm thinking right now, this is all coincidental. I have had blood checks previously to ck for autoimmune but they are always ok. At any rate, I thank you both for the info! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Beth Dermatomyositis Joyce Myositis is a general term for swelling of the muscles. Within the broad category of Myositis, one group is referred to as Inflammatory Myopathies. This includes Dermatomyositis, Polymyositis, Inclusion-Body Myositis and Juvenile Myositis. These diseases cause swelling and loss of muscle. They are also called idiopathic inflammatory myopathies. The two we hear most of are Dermatomyositis and Polymyositis. We have several members here with them. I was suspected of possibly having Polymyositis, but that has not been confirmed to this point, so I'm still sitting more where MB was before. Inflammatory myopathies are thought to be autoimmune diseases, meaning the body's immune system, which normally fights infections and viruses, is misdirected and attacks the body's own normal, healthy tissue through inflammation, or swelling. All of these diseases can cause muscle weakness, but each type is different. DM (Dermatomyositis) is the easiest type of myositis to diagnose because of the skin rash which is often seen before any muscle weakness is felt. The DM rash looks patchy, dusky, and reddish or purple. It is found on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles. Some people also have hardened bumps under the skin, called calcinosis. The skin rash and weak muscles are caused by inflammation, or swelling, in the blood vessels under the skin and in the muscles, also called vasculitis. Patients who have the skin rash but feel no muscle weakness have amyopathic DM, or DM sine myositis.The weakness begins with muscles that are closest to and within the trunk of the body. Neck, hip, back and shoulder muscles are examples. Some DM patients have muscle pain.Signs and symptomsSigns Appearance of a rash on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles Scaly, dry or rough skin Trouble rising from a seated position, or getting up after a fall General tiredness Symptoms Painful and/or itchy rash caused by inflammation of blood vessels under the skin and in the muscles Sudden or progressive weakness in muscles in neck, hip, back and shoulder muscles Difficulty swallowing (dysphagia), a feeling of choking Hardened lumps or sheets of calcium, called calcinosis, under the skin Changes in voice (dysphonia), especially hoarseness > > > >> > > > Hi,> > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > after transplant. He came out to our support group and gave the> > > > members hope. And as the discussion is going, different hospitals> > > > have different criteria for lung transplantations. Just because> > you've> > > > been turned down at one doesn't mean another hospital will accept> > you.> > > > A good website to check out is www.unos.org. The website has a lot> > of> > > > valuable information on lung transplantation. Another one of our> > > > Board members had a transplant last year @ age 71 at the University> > of> > > > land. He is also doing very very well. Keep the faith. Don't> > give> > > > up.> > > >> > > > Leanne> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Sher, I'm just going to put 2 cents in here and you take it for what it's worth. The symptoms you describe are symptoms often associated with dermatomyositis. The hoarseness, difficulty swallowing and frequent choking, muscle pain and weakness, hardened calcium deposits under the skin, even sometimes gastrointestinal upsets and disturbances. Since you've already decided to consult a rheumatologist, these are symptoms of which you want to make him aware. The list of things you described in your email made that little bell in my head go off. Just something you might want to think about. Love, Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Saturday, December 13, 2008 12:23:41 PMSubject: Re: Re: Beth Dermatomyositis Bruce/MB ... I'll add in here that I'm going to see a rheumydude. My gastro dr suggested it, because there is NOTHING on x-rays, cscans, or endoscopy that explains the pain I went through not too long ago in my gut. ER twice in 3 days for pain that was a 15! No cause found. Gastro thinks it's fibromyalgia or deep muscle pain...I'm not sure I agree 'cause the discomfort is always in the same place and reoccurring. But, he's the doc so I will go. I also have trouble swallowing and do frequently choke. On liquids, food or even my own saliva. Also have changes in voice...especially hoarseness. I also have these hardened lumps under the skin on my right arm. Now I'm thinking right now, this is all coincidental. I have had blood checks previously to ck for autoimmune but they are always ok. At any rate, I thank you both for the info! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Beth Dermatomyositis Joyce Myositis is a general term for swelling of the muscles. Within the broad category of Myositis, one group is referred to as Inflammatory Myopathies. This includes Dermatomyositis, Polymyositis, Inclusion-Body Myositis and Juvenile Myositis. These diseases cause swelling and loss of muscle. They are also called idiopathic inflammatory myopathies. The two we hear most of are Dermatomyositis and Polymyositis. We have several members here with them. I was suspected of possibly having Polymyositis, but that has not been confirmed to this point, so I'm still sitting more where MB was before. Inflammatory myopathies are thought to be autoimmune diseases, meaning the body's immune system, which normally fights infections and viruses, is misdirected and attacks the body's own normal, healthy tissue through inflammation, or swelling. All of these diseases can cause muscle weakness, but each type is different. DM (Dermatomyositis) is the easiest type of myositis to diagnose because of the skin rash which is often seen before any muscle weakness is felt. The DM rash looks patchy, dusky, and reddish or purple. It is found on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles. Some people also have hardened bumps under the skin, called calcinosis. The skin rash and weak muscles are caused by inflammation, or swelling, in the blood vessels under the skin and in the muscles, also called vasculitis. Patients who have the skin rash but feel no muscle weakness have amyopathic DM, or DM sine myositis.The weakness begins with muscles that are closest to and within the trunk of the body. Neck, hip, back and shoulder muscles are examples. Some DM patients have muscle pain.Signs and symptomsSigns Appearance of a rash on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles Scaly, dry or rough skin Trouble rising from a seated position, or getting up after a fall General tiredness Symptoms Painful and/or itchy rash caused by inflammation of blood vessels under the skin and in the muscles Sudden or progressive weakness in muscles in neck, hip, back and shoulder muscles Difficulty swallowing (dysphagia), a feeling of choking Hardened lumps or sheets of calcium, called calcinosis, under the skin Changes in voice (dysphonia), especially hoarseness > > > >> > > > Hi,> > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > after transplant. He came out to our support group and gave the> > > > members hope. And as the discussion is going, different hospitals> > > > have different criteria for lung transplantations. Just because> > you've> > > > been turned down at one doesn't mean another hospital will accept> > you.> > > > A good website to check out is www.unos.org. The website has a lot> > of> > > > valuable information on lung transplantation. Another one of our> > > > Board members had a transplant last year @ age 71 at the University> > of> > > > land. He is also doing very very well. Keep the faith. Don't> > give> > > > up.> > > >> > > > Leanne> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Sher, I'm just going to put 2 cents in here and you take it for what it's worth. The symptoms you describe are symptoms often associated with dermatomyositis. The hoarseness, difficulty swallowing and frequent choking, muscle pain and weakness, hardened calcium deposits under the skin, even sometimes gastrointestinal upsets and disturbances. Since you've already decided to consult a rheumatologist, these are symptoms of which you want to make him aware. The list of things you described in your email made that little bell in my head go off. Just something you might want to think about. Love, Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Saturday, December 13, 2008 12:23:41 PMSubject: Re: Re: Beth Dermatomyositis Bruce/MB ... I'll add in here that I'm going to see a rheumydude. My gastro dr suggested it, because there is NOTHING on x-rays, cscans, or endoscopy that explains the pain I went through not too long ago in my gut. ER twice in 3 days for pain that was a 15! No cause found. Gastro thinks it's fibromyalgia or deep muscle pain...I'm not sure I agree 'cause the discomfort is always in the same place and reoccurring. But, he's the doc so I will go. I also have trouble swallowing and do frequently choke. On liquids, food or even my own saliva. Also have changes in voice...especially hoarseness. I also have these hardened lumps under the skin on my right arm. Now I'm thinking right now, this is all coincidental. I have had blood checks previously to ck for autoimmune but they are always ok. At any rate, I thank you both for the info! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Beth Dermatomyositis Joyce Myositis is a general term for swelling of the muscles. Within the broad category of Myositis, one group is referred to as Inflammatory Myopathies. This includes Dermatomyositis, Polymyositis, Inclusion-Body Myositis and Juvenile Myositis. These diseases cause swelling and loss of muscle. They are also called idiopathic inflammatory myopathies. The two we hear most of are Dermatomyositis and Polymyositis. We have several members here with them. I was suspected of possibly having Polymyositis, but that has not been confirmed to this point, so I'm still sitting more where MB was before. Inflammatory myopathies are thought to be autoimmune diseases, meaning the body's immune system, which normally fights infections and viruses, is misdirected and attacks the body's own normal, healthy tissue through inflammation, or swelling. All of these diseases can cause muscle weakness, but each type is different. DM (Dermatomyositis) is the easiest type of myositis to diagnose because of the skin rash which is often seen before any muscle weakness is felt. The DM rash looks patchy, dusky, and reddish or purple. It is found on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles. Some people also have hardened bumps under the skin, called calcinosis. The skin rash and weak muscles are caused by inflammation, or swelling, in the blood vessels under the skin and in the muscles, also called vasculitis. Patients who have the skin rash but feel no muscle weakness have amyopathic DM, or DM sine myositis.The weakness begins with muscles that are closest to and within the trunk of the body. Neck, hip, back and shoulder muscles are examples. Some DM patients have muscle pain.Signs and symptomsSigns Appearance of a rash on the eyelids, cheeks, nose, back, upper chest, elbows, knees and knuckles Scaly, dry or rough skin Trouble rising from a seated position, or getting up after a fall General tiredness Symptoms Painful and/or itchy rash caused by inflammation of blood vessels under the skin and in the muscles Sudden or progressive weakness in muscles in neck, hip, back and shoulder muscles Difficulty swallowing (dysphagia), a feeling of choking Hardened lumps or sheets of calcium, called calcinosis, under the skin Changes in voice (dysphonia), especially hoarseness > > > >> > > > Hi,> > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > after transplant. He came out to our support group and gave the> > > > members hope. And as the discussion is going, different hospitals> > > > have different criteria for lung transplantations. Just because> > you've> > > > been turned down at one doesn't mean another hospital will accept> > you.> > > > A good website to check out is www.unos.org. The website has a lot> > of> > > > valuable information on lung transplantation. Another one of our> > > > Board members had a transplant last year @ age 71 at the University> > of> > > > land. He is also doing very very well. Keep the faith. Don't> > give> > > > up.> > > >> > > > Leanne> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Sher Make a list prior to your visit of all these symptoms. Do not feel like you'll sound like a whiny woman because it is the total of the symptoms which may make sense out of it. Things you don't think are related or don't think are significant may be another piece of the puzzle. It may just make sense out of all of it. Fibromyalgia is often diagnosed when its really dermatomyositis too. At the least it will lead to the right tests to try to determine. But everything you describe is consistent with Dermatomyositis while you can have everything you describe from other totally different causes as well. I look at the rheumatologist as a win/win situation. Regardless of what he determines you know more about yourself and perhaps more about how to properly treat and relieve some of the symptoms. > > > > > > > > > > Hi, > > > > > I just had to pipe in about Tom Terrill as he is on our Board of > > > > > Directors and is a friend of mine. He's doing pheonomenally well > > > > > after transplant. He came out to our support group and gave the > > > > > members hope. And as the discussion is going, different hospitals > > > > > have different criteria for lung transplantations. Just because > > > you've > > > > > been turned down at one doesn't mean another hospital will accept > > > you. > > > > > A good website to check out is www.unos.org. The website has a lot > > > of > > > > > valuable information on lung transplantation. Another one of our > > > > > Board members had a transplant last year @ age 71 at the University > > > of > > > > > land. He is also doing very very well. Keep the faith. Don't > > > give > > > > > up. > > > > > > > > > > Leanne > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Morn' MB, Trust you had fun picking out a Xmas Tree for your Aunt... I think the TREE is better than the pressies! Yep I'm with you.. I DO feel better when I KNOW what is what... at the moment I don't know either & it really irritates me! I too am suspicious that I may have one or other CTD especially since the Ro52 antibody showed up to join the sudden onset Raynaud's as 'outside the frame'.. I have a strange red/brown mark growing steadily on my left cheek that I don't believe is merely a 'freckle' like the Skin Specialist cheerily fobbed me off with (I've got heaps of freckles & NONE of them have ever acted like this does, or is so darn BIG... nor do any of them have an 'edge' around them!) Both my cheeks began being 'overly rosy' some years ago! Big Clownish red patches actually! HATE the look.. A couple of my fingers have really thick yukky patches of skin , my cuticles are always rough regasrdles of how much cream I pour into them & 2 knuckles are changing their texture as well! No one else is as interested in these changes as I am! Time will tell! I wanna know YESTERDAY! Cytoxan has been put on my list of 'possible' treaments too... I'm definitely NOT INTERESTED! No Prednisone.. no Cytoxan either! No Immuran... no NUFFIN!.... TA BOYS! I just like to know WHAT to expect & WHEN to expect it! I'm keeping a CLOSE eye on your developments MB.. Lotsa, in Oz > > > >> > > > Hi,> > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > after transplant. He came out to our support group and gave the> > > > members hope. And as the discussion is going, different hospitals> > > > have different criteria for lung transplantations. Just because> > you've> > > > been turned down at one doesn't mean another hospital will accept> > you.> > > > A good website to check out is www.unos.org. The website has a lot> > of> > > > valuable information on lung transplantation. Another one of our> > > > Board members had a transplant last year @ age 71 at the University> > of> > > > land. He is also doing very very well. Keep the faith. Don't> > give> > > > up.> > > >> > > > Leanne> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 With your diagnosis and your symptoms a CTD sure sounds likely. I think it all sort of fits together in the whole realm of ILD's and CTD's. We seem to be able to look back and recognize symptoms long before diagnosis. I think I'll get a good diagnosis perhaps after death although I had a doctor say even upon biopsy he didn't think they'd figure it out. Makes sense for a group of diseases we know so little about. > > > > > > > > > > Hi, > > > > > I just had to pipe in about Tom Terrill as he is on our Board of > > > > > Directors and is a friend of mine. He's doing pheonomenally well > > > > > after transplant. He came out to our support group and gave the > > > > > members hope. And as the discussion is going, different > hospitals > > > > > have different criteria for lung transplantations. Just because > > > you've > > > > > been turned down at one doesn't mean another hospital will > accept > > > you. > > > > > A good website to check out is www.unos.org. The website has a > lot > > > of > > > > > valuable information on lung transplantation. Another one of our > > > > > Board members had a transplant last year @ age 71 at the > University > > > of > > > > > land. He is also doing very very well. Keep the faith. Don't > > > give > > > > > up. > > > > > > > > > > Leanne > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 , Aunt Mare is me! I was referring to myself in third person, calling myself what my nieces call me. We had a good day. They loved the planetarium show. We then had a bit of lunch and on to the tree lot where we picked out my tree and a couple of wreaths. The tree lot staff were wonderful, tying the tree to the top of my car for me. My nieces and I then came back here and hung out till their parents (my sister and her husband) came and got them. A very good but exhausting day! The state of your hands and cuticles sounds similar in some ways to mine. I had this type of skin condition for a couple of years prior to my diagnosis. It went away completely when I was on the high doses of prednisone and began to come back a bit over a year ago,only after I had been off the pred for several months. I share your reluctance about the meds though since I know my disease is responsive to the prednisone, I will do that again should I need to. I'm willing to try things and I may yet be convinced to try the Cytoxan. We'll see how it goes. I just like the doctors to earn their money, offer me options and reasons for things. Not too much to ask is it? LOL Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Saturday, December 13, 2008 4:59:19 PMSubject: Re: Beth Dermatomyositis Morn' MB, Trust you had fun picking out a Xmas Tree for your Aunt... I think the TREE is better than the pressies! Yep I'm with you.. I DO feel better when I KNOW what is what... at the moment I don't know either & it really irritates me! I too am suspicious that I may have one or other CTD especially since the Ro52 antibody showed up to join the sudden onset Raynaud's as 'outside the frame'.. I have a strange red/brown mark growing steadily on my left cheek that I don't believe is merely a 'freckle' like the Skin Specialist cheerily fobbed me off with (I've got heaps of freckles & NONE of them have ever acted like this does, or is so darn BIG... nor do any of them have an 'edge' around them!) Both my cheeks began being 'overly rosy' some years ago! Big Clownish red patches actually! HATE the look.. A couple of my fingers have really thick yukky patches of skin , my cuticles are always rough regasrdles of how much cream I pour into them & 2 knuckles are changing their texture as well! No one else is as interested in these changes as I am! Time will tell! I wanna know YESTERDAY! Cytoxan has been put on my list of 'possible' treaments too... I'm definitely NOT INTERESTED! No Prednisone.. no Cytoxan either! No Immuran... no NUFFIN!.... TA BOYS! I just like to know WHAT to expect & WHEN to expect it! I'm keeping a CLOSE eye on your developments MB.. Lotsa, in Oz > > > >> > > > Hi,> > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > after transplant. He came out to our support group and gave the> > > > members hope. And as the discussion is going, different hospitals> > > > have different criteria for lung transplantations. Just because> > you've> > > > been turned down at one doesn't mean another hospital will accept> > you.> > > > A good website to check out is www.unos.org. The website has a lot> > of> > > > valuable information on lung transplantation. Another one of our> > > > Board members had a transplant last year @ age 71 at the University> > of> > > > land. He is also doing very very well. Keep the faith. Don't> > give> > > > up.> > > >> > > > Leanne> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 MB I guess i carry forward a philosophy I had in business. It was: " There are not right or wrong decisions as long as the decisions are informed ones and made by going through the right processes. " I think that applies more than ever to our conditions. I'm sure you'll force them to fully inform you so you can do what is best for you. > > > > > > > > > > Hi, > > > > > I just had to pipe in about Tom Terrill as he is on our Board of > > > > > Directors and is a friend of mine. He's doing pheonomenally well > > > > > after transplant. He came out to our support group and gave the > > > > > members hope. And as the discussion is going, different hospitals > > > > > have different criteria for lung transplantations. Just because > > > you've > > > > > been turned down at one doesn't mean another hospital will accept > > > you. > > > > > A good website to check out is www.unos.org. The website has a lot > > > of > > > > > valuable information on lung transplantation. Another one of our > > > > > Board members had a transplant last year @ age 71 at the University > > > of > > > > > land. He is also doing very very well. Keep the faith. Don't > > > give > > > > > up. > > > > > > > > > > Leanne > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Oh SCILLY me... now have you ever told us how you got to be known as Aunt Mare?????? Make those Drs work really hard MB... that's what they signed up for! As you've no doubt picked up by now I'm just Drug Phobic.....they scare me scilly with all the unknowns... their cost/benefit ratios never seem to DO it for me! Setting off body systems in unforseen ways......all that stuff! I'll watch & learn! SGIO > > > > >> > > > > Hi,> > > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > > after transplant. He came out to our support group and gave the> > > > > members hope. And as the discussion is going, different hospitals> > > > > have different criteria for lung transplantations. Just because> > > you've> > > > > been turned down at one doesn't mean another hospital will accept> > > you.> > > > > A good website to check out is www.unos.org. The website has a lot> > > of> > > > > valuable information on lung transplantation. Another one of our> > > > > Board members had a transplant last year @ age 71 at the University> > > of> > > > > land. He is also doing very very well. Keep the faith. Don't> > > give> > > > > up.> > > > >> > > > > Leanne> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 , I have sensed that you're 'drug phobic' and I totally understand it, I really do. I found out kind of by happenstance that the prednisone helps me and I don't have any side effects that aren't manageable for me. In fact I quite firmly believe that the very high doses of steroids (IV solumedrol) in the hospital saved my life and then the somewhat lower doses over a period of months stablized me. It helped that my doctor at the time was very pro-active in preparing me and making sure I had everything I needed to combat the side effects. I will be looking for the same kind of support for any meds that I'm on in the future. Right now I'm on nothing at all with the exception of Nexium for the reflux. I'm starting to see very small signs that something is on the march inside me again which is why I'm willing to listen to the medication talk from the doctors. I'm Aunt Mare to my nieces and nephews...Lord I guess it's just that I've always been either Mare or MB to my family. I think Aunt Mare is just easier for the little kids than Aunt Beth. I do enjoy spending time with them. My sisters girls, and Grace are 4 and a half and 6. It's easy for me to take them out by myself. They do exactly what I ask them to do and are quite content to slow down and work within my limitations. It's nice to be able to give my sister and her hubby a chance to go Christmas shopping...make a contribution and have fun besides! How are all the little ones in your family? Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Saturday, December 13, 2008 5:32:25 PMSubject: Re: Beth Dermatomyositis Oh SCILLY me... now have you ever told us how you got to be known as Aunt Mare?????? Make those Drs work really hard MB... that's what they signed up for! As you've no doubt picked up by now I'm just Drug Phobic.....they scare me scilly with all the unknowns... their cost/benefit ratios never seem to DO it for me! Setting off body systems in unforseen ways......all that stuff! I'll watch & learn! SGIO > > > > >> > > > > Hi,> > > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > > after transplant. He came out to our support group and gave the> > > > > members hope. And as the discussion is going, different hospitals> > > > > have different criteria for lung transplantations. Just because> > > you've> > > > > been turned down at one doesn't mean another hospital will accept> > > you.> > > > > A good website to check out is www.unos.org. The website has a lot> > > of> > > > > valuable information on lung transplantation. Another one of our> > > > > Board members had a transplant last year @ age 71 at the University> > > of> > > > > land. He is also doing very very well. Keep the faith. Don't> > > give> > > > > up.> > > > >> > > > > Leanne> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Bruce/MB ... yes, I will go prepared with my list of symptoms. Again, thanks for posting the info. I would not have given this 'stuff' a second thought. Now I will. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Beth Dermatomyositis SherMake a list prior to your visit of all these symptoms. Do not feel likeyou'll sound like a whiny woman because it is the total of the symptomswhich may make sense out of it. Things you don't think are related ordon't think are significant may be another piece of the puzzle. It mayjust make sense out of all of it. Fibromyalgia is often diagnosed whenits really dermatomyositis too. At the least it will lead to the righttests to try to determine. But everything you describe is consistentwith Dermatomyositis while you can have everything you describe fromother totally different causes as well. I look at the rheumatologist asa win/win situation. Regardless of what he determines you know moreabout yourself and perhaps more about how to properly treat and relievesome of the symptoms.> > > > >> > > > > Hi,> > > > > I just had to pipe in about Tom Terrill as he is on our Boardof> > > > > Directors and is a friend of mine. He's doing pheonomenallywell> > > > > after transplant. He came out to our support group and gavethe> > > > > members hope. And as the discussion is going, differenthospitals> > > > > have different criteria for lung transplantations. Justbecause> > > you've> > > > > been turned down at one doesn't mean another hospital willaccept> > > you.> > > > > A good website to check out is www.unos.org. The website has alot> > > of> > > > > valuable information on lung transplantation. Another one ofour> > > > > Board members had a transplant last year @ age 71 at theUniversity> > > of> > > > > land. He is also doing very very well. Keep the faith.Don't> > > give> > > > > up.> > > > >> > > > > Leanne> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 MB... isn't it great Spending time with little ones... they are so 'fresh'! My 2 local grandbubbies are really having a great buzz with the 'Slippa Sistas'... Zoe stayed over on Friday night & we did 2 walks around the block with Sugar n' Spice... first for their 'Daily' & the 2nd to see the Neighborhood Xmas lights. The puppies were most excited about a night-time foray.. they were in BLISS at the night odours!!!!!! They run together like 2 teensy weency little 'horses-in-harness'....fluff-balls galloping down the footpath! They know every gate that has a dog on the other side... some they're TERRIFIED of ... others bring them great excitement, much licking through the fence & others they love to have great "Barking Battles ' with! Shortly, I'll be taking the 'Slippa Sistas' travelling with me, firstly to Melbourne & then Tasmania ... Ahli wants to have HER turn at playing with them. This'll be my first experience of flying with animals! My Hubby is in Melbourne already... he's doing maintenance work on his house down there that he rents out. We'll drive back together late in January. I just love the chatting that goes on with the kids.. they come out with some pretty funny stuff! Often very wise too... never know what's coming NEXT! Cheers, GIO > > > > > >> > > > > > Hi,> > > > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > > > after transplant. He came out to our support group and gave the> > > > > > members hope. And as the discussion is going, different hospitals> > > > > > have different criteria for lung transplantations. Just because> > > > you've> > > > > > been turned down at one doesn't mean another hospital will accept> > > > you.> > > > > > A good website to check out is www.unos.org. The website has a lot> > > > of> > > > > > valuable information on lung transplantation. Another one of our> > > > > > Board members had a transplant last year @ age 71 at the University> > > > of> > > > > > land. He is also doing very very well. Keep the faith. Don't> > > > give> > > > > > up.> > > > > >> > > > > > Leanne> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 , 'Fresh' is precisely the right word. I just adore all my nieces and nephews, they are so much fun. Both of my sisters are younger than I am and both of them began their families well into their 30's so I get to have the fun of the little ones while mine is a grown man! Sounds like your little grands are having a great time with Sugar and Spice. Nothing goes together as well as children and dogs. Hope your trip goes smoothly and the pups travel well. Give them a belly rub from me! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Saturday, December 13, 2008 7:50:50 PMSubject: Re: Beth Dermatomyositis MB... isn't it great Spending time with little ones... they are so 'fresh'! My 2 local grandbubbies are really having a great buzz with the 'Slippa Sistas'... Zoe stayed over on Friday night & we did 2 walks around the block with Sugar n' Spice... first for their 'Daily' & the 2nd to see the Neighborhood Xmas lights. The puppies were most excited about a night-time foray.. they were in BLISS at the night odours!!!!!! They run together like 2 teensy weency little 'horses-in-harness' ....fluff- balls galloping down the footpath! They know every gate that has a dog on the other side... some they're TERRIFIED of ... others bring them great excitement, much licking through the fence & others they love to have great "Barking Battles ' with! Shortly, I'll be taking the 'Slippa Sistas' travelling with me, firstly to Melbourne & then Tasmania ... Ahli wants to have HER turn at playing with them. This'll be my first experience of flying with animals! My Hubby is in Melbourne already... he's doing maintenance work on his house down there that he rents out. We'll drive back together late in January. I just love the chatting that goes on with the kids.. they come out with some pretty funny stuff! Often very wise too... never know what's coming NEXT! Cheers, GIO > > > > > >> > > > > > Hi,> > > > > > I just had to pipe in about Tom Terrill as he is on our Board of> > > > > > Directors and is a friend of mine. He's doing pheonomenally well> > > > > > after transplant. He came out to our support group and gave the> > > > > > members hope. And as the discussion is going, different hospitals> > > > > > have different criteria for lung transplantations. Just because> > > > you've> > > > > > been turned down at one doesn't mean another hospital will accept> > > > you.> > > > > > A good website to check out is www.unos.org. The website has a lot> > > > of> > > > > > valuable information on lung transplantation. Another one of our> > > > > > Board members had a transplant last year @ age 71 at the University> > > > of> > > > > > land. He is also doing very very well. Keep the faith. Don't> > > > give> > > > > > up.> > > > > >> > > > > > Leanne> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Beth I have been on cytoxan for 5 months for my scleroderma and pred at 40 to 10 for 1 1/2 yrs for the IPF . The rhuemie put me back at 20 while on the cytoxAN. I am going to see the rhuemie tomorrow and discuss this treatment with her.I have been feeling worse over the last 2 months. I have muscle spasm only on my left side all the time. I am not on oxygen but my sats have been in the 80's when I shower or exert myself although they recover quickly when I rest.I just cant believe it is working for me because I feel lousy but who knows maybe it is just the side effects. I just know that I felt alot better in July than I do now. I look forward to seeing you in Florida. Take care and don't overdue . Remember Zena's motto rest every 15 minute. IPF 2/07 Scleroderma raynauds and Sjogrens Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 karen do you have o2 in the house? if so start using it in the shower it makes a big difference i used to get very tired during a shower, since i started using o2, showering is less tiring sometimes i turn the lpms up when i go into the shower i learned about using o2 in the shower from someone on the board - don't remember who several people have told me that they use a terry cloth robe after the shower i don't have one, so i use 2 towels instead i sit down on the throne to dry my legs so i don't have to bend several people on the board told me about this Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: Beth DermatomyositisTo: Breathe-Support Date: Sunday, December 14, 2008, 2:29 PM Beth I have been on cytoxan for 5 months for my scleroderma and pred at 40 to 10 for 1 1/2 yrs for the IPF . The rhuemie put me back at 20 while on the cytoxAN. I am going to see the rhuemie tomorrow and discuss this treatment with her.I have been feeling worse over the last 2 months. I have muscle spasm only on my left side all the time. I am not on oxygen but my sats have been in the 80's when I shower or exert myself although they recover quickly when I rest.I just cant believe it is working for me because I feel lousy but who knows maybe it is just the side effects. I just know that I felt alot better in July than I do now. I look forward to seeing you in Florida. Take care and don't overdue . Remember Zena's motto rest every 15 minute. IPF 2/07 Scleroderma raynauds and Sjogrens Quote Link to comment Share on other sites More sharing options...
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