Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 , My doctors have me on Vitamin D 1000 IU/day and I have had no adverse effects, natural D in sunlight makes me feel my best. I'm in my most pain on cloudy rainy days. Everyone's NS is different. Wishing you well, Rick McDonough wrote: A little background first. One of my sisters is suspected to have sarcoidosis. She developed lumps/growths on her arms when she was nursing her first child. A chest xray was also suspicious, but she was also told sarcoidosis is impossible to definitively diagnose. Fortunately, she hasn't had any more problems. Several years later, I had my first of many kidney stone attacks. As part of the testing, it turns out my Vitamin D level was high, which I was told can be diagnostic for sarcoid, not many things cause a high vitamin D level. Some of the other bloodwork was also possibly indicative of sarcoid. Now I'm living in New England, and my vitamin D level tested low (apparently some 40% of women in New England test low because of lack of sunlight). Endocrinologist put me on megadoses for several weeks, then 1000 IUs once a day. I developed ringing in my ears, but I was also taking Vicodin for hip dysplasia (replacement on Feb. 26). Everyone assumed the ringing was from the Vicodin, but I've since read that vitamin D supplements can cause toxicity pretty quickly in someone with sarcoidosis (I also have high calcium levels), so I just stopped the vitamin D. Does anyone know anything about this? Also, is this list just for people with neurological symptoms from sarcoid? If so, is there a more general list. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 , My doctors have me on Vitamin D 1000 IU/day and I have had no adverse effects, natural D in sunlight makes me feel my best. I'm in my most pain on cloudy rainy days. Everyone's NS is different. Wishing you well, Rick McDonough wrote: A little background first. One of my sisters is suspected to have sarcoidosis. She developed lumps/growths on her arms when she was nursing her first child. A chest xray was also suspicious, but she was also told sarcoidosis is impossible to definitively diagnose. Fortunately, she hasn't had any more problems. Several years later, I had my first of many kidney stone attacks. As part of the testing, it turns out my Vitamin D level was high, which I was told can be diagnostic for sarcoid, not many things cause a high vitamin D level. Some of the other bloodwork was also possibly indicative of sarcoid. Now I'm living in New England, and my vitamin D level tested low (apparently some 40% of women in New England test low because of lack of sunlight). Endocrinologist put me on megadoses for several weeks, then 1000 IUs once a day. I developed ringing in my ears, but I was also taking Vicodin for hip dysplasia (replacement on Feb. 26). Everyone assumed the ringing was from the Vicodin, but I've since read that vitamin D supplements can cause toxicity pretty quickly in someone with sarcoidosis (I also have high calcium levels), so I just stopped the vitamin D. Does anyone know anything about this? Also, is this list just for people with neurological symptoms from sarcoid? If so, is there a more general list. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Just a note on the lumps on your sister's arms. That's how I was diagnosed with sarcoid - subcutaneous lumps. The drs did a needle biopsy and then a more thorough biopsy. I also have had asthma since childhood and have been hospitalized with it many times especially when I was younger. (I am 45 now) I remember back in the 80's in the hospital, they didn't know if it was asthma or not due to the x-rays they were doing. They treated me with pred and asthma drugs anyway and I was released. I think back now and wonder if it was sarcoid and they just didn't diagnose it since back then there since there wasn't much info on sarcoid. (Just a thought on my part.) I also notice that you said you moved to New England. I live in NH and have gone to Boston to some of the best hospitals , like Mass General and Brigham's Women's. I was wondering where you were going. Unfortunately, I don't remember much about the Vitamin D in my system although they told me to stay out of the sun during the summer (which you will find that the summer in New England here is only about 2 mos. out of the year!) Also my ANA was high. By the way, this is a list for neuro and general all over sarcoid, so feel free to post and ask questions. We are lucky to have a lot of educated people and information on sarcoidosis, (not only neuro). I wonder what other list you are talking about. Well, I hope I helped you with some of my notes. Take care and welcome to the list. Debbie T. Co-Moderator McDonough wrote: A little background first. One of my sisters is suspected to have sarcoidosis. She developed lumps/growths on her arms when she was nursing her first child. A chest xray was also suspicious, but she was also told sarcoidosis is impossible to definitively diagnose. Fortunately, she hasn't had any more problems. Several years later, I had my first of many kidney stone attacks. As part of the testing, it turns out my Vitamin D level was high, which I was told can be diagnostic for sarcoid, not many things cause a high vitamin D level. Some of the other bloodwork was also possibly indicative of sarcoid. Now I'm living in New England, and my vitamin D level tested low (apparently some 40% of women in New England test low because of lack of sunlight). Endocrinologist put me on megadoses for several weeks, then 1000 IUs once a day. I developed ringing in my ears, but I was also taking Vicodin for hip dysplasia (replacement on Feb. 26). Everyone assumed the ringing was from the Vicodin, but I've since read that vitamin D supplements can cause toxicity pretty quickly in someone with sarcoidosis (I also have high calcium levels), so I just stopped the vitamin D. Does anyone know anything about this? Also, is this list just for people with neurological symptoms from sarcoid? If so, is there a more general list. Debbie T.Co-Moderator Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Hi , Welcome to the group. We're sorry that you and your sister have come up against this disease. We can help with sarcoidosis-- and not just neurosarcoidosis. So many of us have multi-systemic sarcoidosis-- so that we have a lot of information to share. Pulmonary sarcoidosis can be diagnosed via bronchoscopy where they can go in and take samples of lung tissue. One thing to be aware of is that sarc does like to run in families, more within siblings, than from parent to child. So it may be that both you and your sister have sarc. The issue with Vit D is still up in the air. One particular site says that it is the culprit of all sarc-- and they have the cure. If that was so-- we'd all be breaking down that door.... There is some studies that have shown that we do have several factors that lead to nutritional issues-- but whether it is that we don't synergize Vit D or that we don't synergize Vit C the way we should-- they haven't figured out. For now-- we still don't know what causes sarcoidosis--so the best we can do is try to slow the progression of the disease. I know that kidney stones can be caused by several problems, and high calcium levels are one of them. Do you have high cholestrol also? It sounds like you've not been diagnosed with sarc- are your lungs clear? Do you have arthritis problems? How are the eyes?-- do you have light sensitivity? I ask because these are symptoms of sarcoidosis-- and many times our MD's don't put the puzzle together. Let us know and ask away-- we are here to help. ANother site you may find helpful is FSR--www.stopsarcoidosis.org. Sincerely, Tracie NS Co-owner/moderator Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 I'm going to the Lahey Clinic in Burlington, but not for sarcoidosis, I'm going for kidney stones and now the hip replacement. When I mention sarcoidosis, doctors tend to blow right past it. Except for an endocrinologist I went to when I first had kidney stones and was living in the DC area. In addition to the high vitamin D level, he said it could explain why I was developing kidney stones despite astronomically high citrate levels, which should have dissolved them. Then I moved to NH... That is so interesting about the positive ANA. Several years ago, my PCP left a message on my voicemail at work and said I had tested positive for rheumatoid arthritis. I didn't call right back, because I was pretty sure I didn't, and a little while later, he left another message and said he'd made a mistake, that I wasn't positive for RA, I was positive for lupus. Went to an endocrinologist (Concord, NH) who told me the ANA was a false positive, even though I mentioned the sarcoidosis. I have another appointment with the endocrinologist at Lahey after my hip replacement, and I'm going to bring all of this up again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 << we don't synergize Vit C the way we should-- they haven't figured out. >> I wonder if that could explain my high citrate levels. << I know that kidney stones can be caused by several problems, and high calcium levels are one of them. Do you have high cholestrol also? It sounds like you've not been diagnosed with sarc- are your lungs clear? Do you have arthritis problems? How are the eyes?-- do you have light sensitivity? >> I have high blood and urinary calcium. Cholesterol is only marginally high. Lungs are clear, but I've been told I'm borderline for asthma, something about my mid-level airways. I'm a swimmer and sometimes have just ever so slight a problem with exhaling completely. Aside from the arthritis from the hip dysplasia, I've had arthritis in my rib cage since I was in my 20s. I wouldn't say I have light sensitivity, but I do have some double vision in certain lighting situations, and several years ago, I started perceiving light a bit oddly at night. I'll be out walking and say what the heck is that - and it will just be something like light reflecting off a wet pavement, but it tends to really jump out at me. One other question. At least here in NH, some doctors seem to think that sarcoidosis is racially connected. One urologist said - oh, we used to see that a lot in the black population in Hartford - before blowing me off. As far as I know, I'm of Irish and French Canadian extraction, with possibly a little Native American. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 , you have the same MD's we all have. They still think sarc is a disease that hits Blacks more than other races, and that is no longer true. They also think that it is a "benign" disease, and that it will "cook" itself out in a couple of years. --All this is straight from the the 1953 Merck Manual--- and is so very outdated. It also tells them that the only treatment is Prednisone. This is where learning all you can about what you are dealing with is most important. I suspect your "mid" lung section is inflammed by sarcoidosis-- and they are treating it like asthma. That may help- and you may have some asthma on top of the sarc-- many of us do. So they stick you on inhalers, and the inflammation goes down-- sometimes those steroid inhalers do help. Take them away, and you really find out how inflammed the lungs and upper bronchials are. (I don't recommend doing that..) As far as the arthritis of the ribcage-- if your lymphs and bronchials are inflammed-- they can mimic arthritic like pain in the ribcage. Also if the liver is inflammed, then you would have upper right quadrant pain-- and I know when it gets going-- the pain and spasms hitting the ribs from inside out is very, very nasty. As far as the night time vision-- since you've undoubtly done prednisone for the asthma, you may have early cataracts. This gives off a wonderful halo around street lights, headlights, etc. At least you get to see the rainbows of nighttime! It isn't dangerous-- unless it interfers with you driving at night. If that is the case, see your Ophthalmologist--(MD) and tell him what happens at night. That way he can do a BATT (Bright Awareness Test) to see if you fall into the area of doing cataract surgery before your day vision goes below 20/60. It's painless, but no one likes bright lights shined into their eyes. I wish I had answers for the Vit D and Vit C theories. My studies have shown that if you are deficient in any vitamin or mineral-- the body will store the minerals (especially) in places they don't belong. Weil, MD states that if you are deficient in calcium,, or on meds that deplete calcium from your body and bones-- then it thinks it needs to stockpile it-- and it ends up in our kidneys (as stones) and in our livers and in our joint spaces as bone spurs. All the wonderful things we suffer from with sarc in those places. Since the granulomas of sarcoidosis end up calcified- we build upon the injured or storage sites. One thing to understand is that when we get sick, or any of our organs become inflammed-- the first thing our immune system does is to send out more inflammation in the way of white cells to fight whatever insult has happened. Then it sends out the proteins to clear out the white cells--TNFa and TNFb. We produce to much TNFa, and it clings on to the white cell it should flush out of our body, and the TNFb races in to carry out the TNFa- and it doesn't get the signal to stop the sequence. Somehow, we don't clear these cells, and they keep building onto itself. This is the granuloma in as simple a description as I can make it. In some cases, the original insult is healed, but the immune system cells have scarred or changed the structure of the organs-- and the organs no longer work correctly. For instance, your lungs should look like a new kitchen sponge-- add sarc and they start looking like the sponge that needs to be tossed in the garbage. Add asthma, and you have an ever greater challenge, as you end up with the goop of mucus laying in there-- cooking up all kinds of infections. Prednisone does help to bring the inflammation down, but take it away, and they've found that the sarc comes back, and many times the scarring gets worse over time. This is where the steriod sparing meds-- Imuran, Methotrexate, Plaquenil, Arava-- (www.arthritis.org has a great drug reference--use the 2007 or 2006 one) and you can see all the DMARDS, BIOLOGICALS, AND ANTI-INFLAMMATORIES) so that you have an idea of what meds are available to you. You'll find that you will need a combination of meds (cocktail) that work for you. All of us are different-- and it seems that it does need to be customized. Hope this helps, Tracie NS Co-owner/modreator here in NH, some doctors seem to think that sarcoidosis is racially connected. One urologist said - oh, we used to see that a lot in the black population in Hartford - before blowing me off. As far as I know, I'm of Irish and French Canadian extraction, with possibly a little Native American. Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 , ANA can be positive for a lot of the autoimmune diseases, so they really do need to figure out what you have. So far, we don't have ANY specific test that confirms sarcoidosis, except when they can get a biopsy of a specific piece of tissue. IT sounds like you do have some serious arthritis going on-- RA or Osteo? or Both. i'm surprised they aren't treating you for it. Take care, and let us know how we can help, Tracie That is so interesting about the positive ANA. SDelicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2008 Report Share Posted February 20, 2008 Tracie, You are right. My first attack was in 1980 with damage to my left lung and obviously it hit all my lymph nodes. Prior to that I was getting everything imaginable. Phlebitis in both legs, erythema nodusum. One doctor told me I bruised myself 20 times. Yeah right. Anyways when I was hit that time I was told with my symptoms that it would probably be my only attack for my life. I believe them, however, whenever stressed I would get erythema nodusum on my lower legs but I have been plagued with health issues and you know how people look at you and talk. They think you are a hypochondriac. Well, fast forward 26 yrs later and I got hit with optic neuritis and all the NS symptoms. My doctor is still guarded with MS as a possibility however, he told me NS is the same as MS. He even wants me to attend his seminar this weekend for stem cell research and MS that they are hosting which is free of charge. It is being held here in Milwaukee, WI from 9 am to 12 noon and they serve an awesome breakfast. The one doctor speaking is from Madison, WI. This last attack was from overdoing it with trying to work fulltime and handle a major downsizing and renovation here. But there were chemicals being used for floors, new carpeting, new wood floors which they cut inside the house and my lack of sleep and not eating right probably contributed to it all. I did not see it then but have had time to reflect. But it was a long time coming as I have been working with the life transformation coach. I have had to go to a lot slower lifestyle and ensure I get my sleep, vitamins, etc that we all know we have to do. I was going on 5 hrs of sleep. I can't anymore. Thanks for the constant flow of information. I have had 2 good friends that have stuck by me. Some of the people at work have been horrible. You know when your good friends tell you what they say. It hurts and dealing with this illness and that on top of it is so difficult. I never wish bad on anyone but I think they lack compassion. I only hope that nothing happens to them. Hugs, KatDelicious ideas to please the pickiest eaters. Watch the video on AOL Living. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 According to some of the reading I did on sarc in the beginning the irish also tend to have a high tendency for sarcoid. I also am little irish, native american and scott....Connie --- McDonough wrote: > << we don't synergize Vit C the way we should-- they > haven't figured out. >> > > I wonder if that could explain my high citrate > levels. > > << I know that kidney stones can be caused by > several problems, and high > calcium levels are one of them. Do you have high > cholestrol also? It sounds > like you've not been diagnosed with sarc- are your > lungs clear? Do you have > arthritis problems? How are the eyes?-- do you have > light sensitivity? >> > > I have high blood and urinary calcium. Cholesterol > is only marginally > high. Lungs are clear, but I've been told I'm > borderline for asthma, > something about my mid-level airways. I'm a swimmer > and sometimes have just > ever so slight a problem with exhaling completely. > > Aside from the arthritis from the hip dysplasia, > I've had arthritis in my > rib cage since I was in my 20s. I wouldn't say I > have light sensitivity, > but I do have some double vision in certain lighting > situations, and several > years ago, I started perceiving light a bit oddly at > night. I'll be out > walking and say what the heck is that - and it will > just be something like > light reflecting off a wet pavement, but it tends to > really jump out at me. > > One other question. At least here in NH, some > doctors seem to think that > sarcoidosis is racially connected. One urologist > said - oh, we used to see > that a lot in the black population in Hartford - > before blowing me off. As > far as I know, I'm of Irish and French Canadian > extraction, with possibly a > little Native American. > > > ________________________________________________________________________________\ ____ OMG, Sweet deal for Yahoo! users/friends:Get A Month of Blockbuster Total Access, No Cost. W00t http://tc.deals.yahoo.com/tc/blockbuster/text2.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 According to some of the reading I did on sarc in the beginning the irish also tend to have a high tendency for sarcoid. I also am little irish, native american and scott....Connie --- McDonough wrote: > << we don't synergize Vit C the way we should-- they > haven't figured out. >> > > I wonder if that could explain my high citrate > levels. > > << I know that kidney stones can be caused by > several problems, and high > calcium levels are one of them. Do you have high > cholestrol also? It sounds > like you've not been diagnosed with sarc- are your > lungs clear? Do you have > arthritis problems? How are the eyes?-- do you have > light sensitivity? >> > > I have high blood and urinary calcium. Cholesterol > is only marginally > high. Lungs are clear, but I've been told I'm > borderline for asthma, > something about my mid-level airways. I'm a swimmer > and sometimes have just > ever so slight a problem with exhaling completely. > > Aside from the arthritis from the hip dysplasia, > I've had arthritis in my > rib cage since I was in my 20s. I wouldn't say I > have light sensitivity, > but I do have some double vision in certain lighting > situations, and several > years ago, I started perceiving light a bit oddly at > night. I'll be out > walking and say what the heck is that - and it will > just be something like > light reflecting off a wet pavement, but it tends to > really jump out at me. > > One other question. At least here in NH, some > doctors seem to think that > sarcoidosis is racially connected. One urologist > said - oh, we used to see > that a lot in the black population in Hartford - > before blowing me off. As > far as I know, I'm of Irish and French Canadian > extraction, with possibly a > little Native American. > > > ________________________________________________________________________________\ ____ OMG, Sweet deal for Yahoo! users/friends:Get A Month of Blockbuster Total Access, No Cost. W00t http://tc.deals.yahoo.com/tc/blockbuster/text2.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Connie, Me too; my maiden name was ( airport, River, etc). We also have some American Indian to. Terri G. > > > << we don't synergize Vit C the way we should-- they > > haven't figured out. >> > > > > I wonder if that could explain my high citrate > > levels. > > > > << I know that kidney stones can be caused by > > several problems, and high > > calcium levels are one of them. Do you have high > > cholestrol also? It sounds > > like you've not been diagnosed with sarc- are your > > lungs clear? Do you have > > arthritis problems? How are the eyes?-- do you have > > light sensitivity? >> > > > > I have high blood and urinary calcium. Cholesterol > > is only marginally > > high. Lungs are clear, but I've been told I'm > > borderline for asthma, > > something about my mid-level airways. I'm a swimmer > > and sometimes have just > > ever so slight a problem with exhaling completely. > > > > Aside from the arthritis from the hip dysplasia, > > I've had arthritis in my > > rib cage since I was in my 20s. I wouldn't say I > > have light sensitivity, > > but I do have some double vision in certain lighting > > situations, and several > > years ago, I started perceiving light a bit oddly at > > night. I'll be out > > walking and say what the heck is that - and it will > > just be something like > > light reflecting off a wet pavement, but it tends to > > really jump out at me. > > > > One other question. At least here in NH, some > > doctors seem to think that > > sarcoidosis is racially connected. One urologist > > said - oh, we used to see > > that a lot in the black population in Hartford - > > before blowing me off. As > > far as I know, I'm of Irish and French Canadian > > extraction, with possibly a > > little Native American. > > > > > > > > > > ________________________________________________________________________\ ____________ > OMG, Sweet deal for Yahoo! users/friends:Get A Month of Blockbuster Total Access, No Cost. W00t > http://tc.deals.yahoo.com/tc/blockbuster/text2.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 Connie, Me too; my maiden name was ( airport, River, etc). We also have some American Indian to. Terri G. > > > << we don't synergize Vit C the way we should-- they > > haven't figured out. >> > > > > I wonder if that could explain my high citrate > > levels. > > > > << I know that kidney stones can be caused by > > several problems, and high > > calcium levels are one of them. Do you have high > > cholestrol also? It sounds > > like you've not been diagnosed with sarc- are your > > lungs clear? Do you have > > arthritis problems? How are the eyes?-- do you have > > light sensitivity? >> > > > > I have high blood and urinary calcium. Cholesterol > > is only marginally > > high. Lungs are clear, but I've been told I'm > > borderline for asthma, > > something about my mid-level airways. I'm a swimmer > > and sometimes have just > > ever so slight a problem with exhaling completely. > > > > Aside from the arthritis from the hip dysplasia, > > I've had arthritis in my > > rib cage since I was in my 20s. I wouldn't say I > > have light sensitivity, > > but I do have some double vision in certain lighting > > situations, and several > > years ago, I started perceiving light a bit oddly at > > night. I'll be out > > walking and say what the heck is that - and it will > > just be something like > > light reflecting off a wet pavement, but it tends to > > really jump out at me. > > > > One other question. At least here in NH, some > > doctors seem to think that > > sarcoidosis is racially connected. One urologist > > said - oh, we used to see > > that a lot in the black population in Hartford - > > before blowing me off. As > > far as I know, I'm of Irish and French Canadian > > extraction, with possibly a > > little Native American. > > > > > > > > > > ________________________________________________________________________\ ____________ > OMG, Sweet deal for Yahoo! users/friends:Get A Month of Blockbuster Total Access, No Cost. W00t > http://tc.deals.yahoo.com/tc/blockbuster/text2.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 --- Connie Griffis wrote: > According to some of the reading I did on sarc in > the > beginning the irish also tend to have a high > tendency > for sarcoid. I also am little irish, native > american > and scott....Connie > --- McDonough > wrote: > > > << we don't synergize Vit C the way we should-- > they > > haven't figured out. >> > > > > I wonder if that could explain my high citrate > > levels. > > > > << I know that kidney stones can be caused by > > several problems, and high > > calcium levels are one of them. Do you have high > > cholestrol also? It sounds > > like you've not been diagnosed with sarc- are your > > lungs clear? Do you have > > arthritis problems? How are the eyes?-- do you > have > > light sensitivity? >> > > > > I have high blood and urinary calcium. > Cholesterol > > is only marginally > > high. Lungs are clear, but I've been told I'm > > borderline for asthma, > > something about my mid-level airways. I'm a > swimmer > > and sometimes have just > > ever so slight a problem with exhaling completely. > > > > Aside from the arthritis from the hip dysplasia, > > I've had arthritis in my > > rib cage since I was in my 20s. I wouldn't say I > > have light sensitivity, > > but I do have some double vision in certain > lighting > > situations, and several > > years ago, I started perceiving light a bit oddly > at > > night. I'll be out > > walking and say what the heck is that - and it > will > > just be something like > > light reflecting off a wet pavement, but it tends > to > > really jump out at me. > > > > One other question. At least here in NH, some > > doctors seem to think that > > sarcoidosis is racially connected. One urologist > > said - oh, we used to see > > that a lot in the black population in Hartford - > > before blowing me off. As > > far as I know, I'm of Irish and French Canadian > > extraction, with possibly a > > little Native American. > > > > > > > > > > > ________________________________________________________________________________\ ____ > OMG, Sweet deal for Yahoo! users/friends:Get A Month > of Blockbuster Total Access, No Cost. W00t > http://tc.deals.yahoo.com/tc/blockbuster/text2.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 --- Connie Griffis wrote: > According to some of the reading I did on sarc in > the > beginning the irish also tend to have a high > tendency > for sarcoid. I also am little irish, native > american > and scott....Connie > --- McDonough > wrote: > > > << we don't synergize Vit C the way we should-- > they > > haven't figured out. >> > > > > I wonder if that could explain my high citrate > > levels. > > > > << I know that kidney stones can be caused by > > several problems, and high > > calcium levels are one of them. Do you have high > > cholestrol also? It sounds > > like you've not been diagnosed with sarc- are your > > lungs clear? Do you have > > arthritis problems? How are the eyes?-- do you > have > > light sensitivity? >> > > > > I have high blood and urinary calcium. > Cholesterol > > is only marginally > > high. Lungs are clear, but I've been told I'm > > borderline for asthma, > > something about my mid-level airways. I'm a > swimmer > > and sometimes have just > > ever so slight a problem with exhaling completely. > > > > Aside from the arthritis from the hip dysplasia, > > I've had arthritis in my > > rib cage since I was in my 20s. I wouldn't say I > > have light sensitivity, > > but I do have some double vision in certain > lighting > > situations, and several > > years ago, I started perceiving light a bit oddly > at > > night. I'll be out > > walking and say what the heck is that - and it > will > > just be something like > > light reflecting off a wet pavement, but it tends > to > > really jump out at me. > > > > One other question. At least here in NH, some > > doctors seem to think that > > sarcoidosis is racially connected. One urologist > > said - oh, we used to see > > that a lot in the black population in Hartford - > > before blowing me off. As > > far as I know, I'm of Irish and French Canadian > > extraction, with possibly a > > little Native American. > > > > > > > > > > > ________________________________________________________________________________\ ____ > OMG, Sweet deal for Yahoo! users/friends:Get A Month > of Blockbuster Total Access, No Cost. W00t > http://tc.deals.yahoo.com/tc/blockbuster/text2.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 , Yes Sarcoid is prevalent in the African/American population, but it is also very high in the ish community too. I am Scandinavian and it is really high in this population, here in the some areas of the states People have never heard of Sarc, but when my mother went to Oslo Norway everyone know about Sarc, kind of like we are so aware of MS in this region. And I, my Mother, possibly her sister and two of her cousins in Norway all have Sarc, the two cousins are wheel chair bound, and her sister has been really sick for years. so I think there is some granitic component there, my 5 cents worth, Marl a --- Connie Griffis wrote: > According to some of the reading I did on sarc in > the > beginning the irish also tend to have a high > tendency > for sarcoid. I also am little irish, native > american > and scott....Connie > --- McDonough > wrote: > > > << we don't synergize Vit C the way we should-- > they > > haven't figured out. >> > > > > I wonder if that could explain my high citrate > > levels. > > > > << I know that kidney stones can be caused by > > several problems, and high > > calcium levels are one of them. Do you have high > > cholestrol also? It sounds > > like you've not been diagnosed with sarc- are your > > lungs clear? Do you have > > arthritis problems? How are the eyes?-- do you > have > > light sensitivity? >> > > > > I have high blood and urinary calcium. > Cholesterol > > is only marginally > > high. Lungs are clear, but I've been told I'm > > borderline for asthma, > > something about my mid-level airways. I'm a > swimmer > > and sometimes have just > > ever so slight a problem with exhaling completely. > > > > Aside from the arthritis from the hip dysplasia, > > I've had arthritis in my > > rib cage since I was in my 20s. I wouldn't say I > > have light sensitivity, > > but I do have some double vision in certain > lighting > > situations, and several > > years ago, I started perceiving light a bit oddly > at > > night. I'll be out > > walking and say what the heck is that - and it > will > > just be something like > > light reflecting off a wet pavement, but it tends > to > > really jump out at me. > > > > One other question. At least here in NH, some > > doctors seem to think that > > sarcoidosis is racially connected. One urologist > > said - oh, we used to see > > that a lot in the black population in Hartford - > > before blowing me off. As > > far as I know, I'm of Irish and French Canadian > > extraction, with possibly a > > little Native American. > > > > > > > > > > > __________________________________________________________ > OMG, Sweet deal for Yahoo! users/friends:Get A Month > of Blockbuster Total Access, No Cost. W00t > http://tc.deals.yahoo.com/tc/blockbuster/text2.com > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 , Yes Sarcoid is prevalent in the African/American population, but it is also very high in the ish community too. I am Scandinavian and it is really high in this population, here in the some areas of the states People have never heard of Sarc, but when my mother went to Oslo Norway everyone know about Sarc, kind of like we are so aware of MS in this region. And I, my Mother, possibly her sister and two of her cousins in Norway all have Sarc, the two cousins are wheel chair bound, and her sister has been really sick for years. so I think there is some granitic component there, my 5 cents worth, Marl a --- Connie Griffis wrote: > According to some of the reading I did on sarc in > the > beginning the irish also tend to have a high > tendency > for sarcoid. I also am little irish, native > american > and scott....Connie > --- McDonough > wrote: > > > << we don't synergize Vit C the way we should-- > they > > haven't figured out. >> > > > > I wonder if that could explain my high citrate > > levels. > > > > << I know that kidney stones can be caused by > > several problems, and high > > calcium levels are one of them. Do you have high > > cholestrol also? It sounds > > like you've not been diagnosed with sarc- are your > > lungs clear? Do you have > > arthritis problems? How are the eyes?-- do you > have > > light sensitivity? >> > > > > I have high blood and urinary calcium. > Cholesterol > > is only marginally > > high. Lungs are clear, but I've been told I'm > > borderline for asthma, > > something about my mid-level airways. I'm a > swimmer > > and sometimes have just > > ever so slight a problem with exhaling completely. > > > > Aside from the arthritis from the hip dysplasia, > > I've had arthritis in my > > rib cage since I was in my 20s. I wouldn't say I > > have light sensitivity, > > but I do have some double vision in certain > lighting > > situations, and several > > years ago, I started perceiving light a bit oddly > at > > night. I'll be out > > walking and say what the heck is that - and it > will > > just be something like > > light reflecting off a wet pavement, but it tends > to > > really jump out at me. > > > > One other question. At least here in NH, some > > doctors seem to think that > > sarcoidosis is racially connected. One urologist > > said - oh, we used to see > > that a lot in the black population in Hartford - > > before blowing me off. As > > far as I know, I'm of Irish and French Canadian > > extraction, with possibly a > > little Native American. > > > > > > > > > > > __________________________________________________________ > OMG, Sweet deal for Yahoo! users/friends:Get A Month > of Blockbuster Total Access, No Cost. W00t > http://tc.deals.yahoo.com/tc/blockbuster/text2.com > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2008 Report Share Posted April 6, 2008 Im Irish too. Maiden name O'Connor. Cathymosaicgirl1 wrote: Connie,Me too; my maiden name was ( airport, River,etc). We also have some American Indian to.Terri G.>> > << we don't synergize Vit C the way we should-- they> > haven't figured out. >>> >> > I wonder if that could explain my high citrate> > levels.> >> > << I know that kidney stones can be caused by> > several problems, and high> > calcium levels are one of them. Do you have high> > cholestrol also? It sounds> > like you've not been diagnosed with sarc- are your> > lungs clear? Do you have> > arthritis problems? How are the eyes?-- do you have> > light sensitivity? >>> >> > I have high blood and urinary calcium. Cholesterol> > is only marginally> > high. Lungs are clear, but I've been told I'm> > borderline for asthma,> > something about my mid-level airways. I'm a swimmer> > and sometimes have just> > ever so slight a problem with exhaling completely.> >> > Aside from the arthritis from the hip dysplasia,> > I've had arthritis in my> > rib cage since I was in my 20s. I wouldn't say I> > have light sensitivity,> > but I do have some double vision in certain lighting> > situations, and several> > years ago, I started perceiving light a bit oddly at> > night. I'll be out> > walking and say what the heck is that - and it will> > just be something like> > light reflecting off a wet pavement, but it tends to> > really jump out at me.> >> > One other question. At least here in NH, some> > doctors seem to think that> > sarcoidosis is racially connected. One urologist> > said - oh, we used to see> > that a lot in the black population in Hartford -> > before blowing me off. As> > far as I know, I'm of Irish and French Canadian> > extraction, with possibly a> > little Native American.> >> > > >>>>>__________________________________________________________\____________> OMG, Sweet deal for Yahoo! users/friends:Get A Month of BlockbusterTotal Access, No Cost. W00t> http://tc.deals.yahoo.com/tc/blockbuster/text2.com> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2008 Report Share Posted April 6, 2008 Im Irish too. Maiden name O'Connor. Cathymosaicgirl1 wrote: Connie,Me too; my maiden name was ( airport, River,etc). We also have some American Indian to.Terri G.>> > << we don't synergize Vit C the way we should-- they> > haven't figured out. >>> >> > I wonder if that could explain my high citrate> > levels.> >> > << I know that kidney stones can be caused by> > several problems, and high> > calcium levels are one of them. Do you have high> > cholestrol also? It sounds> > like you've not been diagnosed with sarc- are your> > lungs clear? Do you have> > arthritis problems? How are the eyes?-- do you have> > light sensitivity? >>> >> > I have high blood and urinary calcium. Cholesterol> > is only marginally> > high. Lungs are clear, but I've been told I'm> > borderline for asthma,> > something about my mid-level airways. I'm a swimmer> > and sometimes have just> > ever so slight a problem with exhaling completely.> >> > Aside from the arthritis from the hip dysplasia,> > I've had arthritis in my> > rib cage since I was in my 20s. I wouldn't say I> > have light sensitivity,> > but I do have some double vision in certain lighting> > situations, and several> > years ago, I started perceiving light a bit oddly at> > night. I'll be out> > walking and say what the heck is that - and it will> > just be something like> > light reflecting off a wet pavement, but it tends to> > really jump out at me.> >> > One other question. At least here in NH, some> > doctors seem to think that> > sarcoidosis is racially connected. One urologist> > said - oh, we used to see> > that a lot in the black population in Hartford -> > before blowing me off. As> > far as I know, I'm of Irish and French Canadian> > extraction, with possibly a> > little Native American.> >> > > >>>>>__________________________________________________________\____________> OMG, Sweet deal for Yahoo! users/friends:Get A Month of BlockbusterTotal Access, No Cost. W00t> http://tc.deals.yahoo.com/tc/blockbuster/text2.com> You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2008 Report Share Posted April 6, 2008 Cathy, Cool; we have our own little Irish contingency here don't we? Terri G. > > > > > << we don't synergize Vit C the way we should-- they > > > haven't figured out. >> > > > > > > I wonder if that could explain my high citrate > > > levels. > > > > > > << I know that kidney stones can be caused by > > > several problems, and high > > > calcium levels are one of them. Do you have high > > > cholestrol also? It sounds > > > like you've not been diagnosed with sarc- are your > > > lungs clear? Do you have > > > arthritis problems? How are the eyes?-- do you have > > > light sensitivity? >> > > > > > > I have high blood and urinary calcium. Cholesterol > > > is only marginally > > > high. Lungs are clear, but I've been told I'm > > > borderline for asthma, > > > something about my mid-level airways. I'm a swimmer > > > and sometimes have just > > > ever so slight a problem with exhaling completely. > > > > > > Aside from the arthritis from the hip dysplasia, > > > I've had arthritis in my > > > rib cage since I was in my 20s. I wouldn't say I > > > have light sensitivity, > > > but I do have some double vision in certain lighting > > > situations, and several > > > years ago, I started perceiving light a bit oddly at > > > night. I'll be out > > > walking and say what the heck is that - and it will > > > just be something like > > > light reflecting off a wet pavement, but it tends to > > > really jump out at me. > > > > > > One other question. At least here in NH, some > > > doctors seem to think that > > > sarcoidosis is racially connected. One urologist > > > said - oh, we used to see > > > that a lot in the black population in Hartford - > > > before blowing me off. As > > > far as I know, I'm of Irish and French Canadian > > > extraction, with possibly a > > > little Native American. > > > > > > > > > > > > > > > > > > __________________________________________________________\ > ____________ > > OMG, Sweet deal for Yahoo! users/friends:Get A Month of Blockbuster > Total Access, No Cost. W00t > > http://tc.deals.yahoo.com/tc/blockbuster/text2.com > > > > > > > > > --------------------------------- > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2008 Report Share Posted April 6, 2008 Cathy, Cool; we have our own little Irish contingency here don't we? Terri G. > > > > > << we don't synergize Vit C the way we should-- they > > > haven't figured out. >> > > > > > > I wonder if that could explain my high citrate > > > levels. > > > > > > << I know that kidney stones can be caused by > > > several problems, and high > > > calcium levels are one of them. Do you have high > > > cholestrol also? It sounds > > > like you've not been diagnosed with sarc- are your > > > lungs clear? Do you have > > > arthritis problems? How are the eyes?-- do you have > > > light sensitivity? >> > > > > > > I have high blood and urinary calcium. Cholesterol > > > is only marginally > > > high. Lungs are clear, but I've been told I'm > > > borderline for asthma, > > > something about my mid-level airways. I'm a swimmer > > > and sometimes have just > > > ever so slight a problem with exhaling completely. > > > > > > Aside from the arthritis from the hip dysplasia, > > > I've had arthritis in my > > > rib cage since I was in my 20s. I wouldn't say I > > > have light sensitivity, > > > but I do have some double vision in certain lighting > > > situations, and several > > > years ago, I started perceiving light a bit oddly at > > > night. I'll be out > > > walking and say what the heck is that - and it will > > > just be something like > > > light reflecting off a wet pavement, but it tends to > > > really jump out at me. > > > > > > One other question. At least here in NH, some > > > doctors seem to think that > > > sarcoidosis is racially connected. One urologist > > > said - oh, we used to see > > > that a lot in the black population in Hartford - > > > before blowing me off. As > > > far as I know, I'm of Irish and French Canadian > > > extraction, with possibly a > > > little Native American. > > > > > > > > > > > > > > > > > > __________________________________________________________\ > ____________ > > OMG, Sweet deal for Yahoo! users/friends:Get A Month of Blockbuster > Total Access, No Cost. W00t > > http://tc.deals.yahoo.com/tc/blockbuster/text2.com > > > > > > > > > --------------------------------- > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Me too. I'm Irish and Swedish, which also has a very high incidence of sarc. Double trouble, that's me!!! Bonnie B. My mom was a D'arcy..Planning your summer road trip? Check out AOL Travel Guides. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2008 Report Share Posted April 7, 2008 Me too. I'm Irish and Swedish, which also has a very high incidence of sarc. Double trouble, that's me!!! Bonnie B. My mom was a D'arcy..Planning your summer road trip? Check out AOL Travel Guides. Quote Link to comment Share on other sites More sharing options...
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