Guest guest Posted September 30, 2005 Report Share Posted September 30, 2005 Thank you, Tracie for writing me back & for the info. No. Never had anything like it. I still don't know if I DO have it, either. I've never even HEARD of it until three months ago when I had an elevated ACE test. The second test they did two months ago was elevated even more than the 1st one. My doctor told me my " number " was 101 (the most recent test) & that " normal " is 70 or below. Regarding my appt. yesterday (the 29th): the chest x-ray they did showed a " possible " enlarged lymph node. The docs couldn't even tell me one way or the other if it WAS an actual lymph node or not! My doctor told me that it " could just be the way I'm built. " ?? Okay. I PRAY that's all it is. But they want to get a skin biopsy asap. I've been having facial lesions or really bad acne for the past 9 months (since I've been ill) that I've never had b-4. I've never had a problem w/acne in my life. So my rheumatologist says she wants the biopsy INSTEAD OF another chest x-ray because that would tell them for certain if it's sarcoid. BUT...IF IT IS this strange " disease " , I REFUSE to allow it to debilitate me. In fact, I will accept & acknowledge it & that it's real but that it only has a VERY TEMPORARY PLACE IN MY LIFE AND MY BODY. I won't accept illness or disease. I read a great deal on " mind/body " connections & believe in it 200%. I've got tons of suppressed rage & have had for years. It's time to GET WELL though. :-) For me, this is a challenge. Nothing more. I also believe that my Higher Power (God? sometimes!) knows what " it " or " He " is doing. I trust all will work out for the good. I do have one more question. Do ppl. w/sarcoid need to take narcotic pain meds? Just curious... Thanks again & have a great evening! April D. __________________________________________________________________ > It does, but it's hard to say what is going on until they get the blood and > ct's stuff. In our archives is an article on the brain and how it functions. > It's in normal english-- so it's easy to understand. > This disease does have a systemic inflammation, and many of run fevers daily. > If your hypothalmus is involved, it's easy for the body to not be able to > regulate it's thermostat. Also, if there is brain inflammation-- then they need > to figure out why. > Have you had sarcoidosis in the past? > > Looking forward to hearing the outcome of todays appt. > > Sincerely, > Tracie > NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Hi Rose, I had a skin biopsy when I had a subcutaneous mass on my arm. It didn't hurt. They just numbed it up a little with some anesthesia (sp?) and did a punch biopsy where they take a small specimen of the layers of your skin then they give you a few stitches to sew it up. They send it to the lab to have it looked at. The mass on my arm was a raised bump about 4 cm x 10 cm long. It was warm to the touch, red and raised. That's what confirmed that I had sarcoidosis. DebbieRose wrote: April, I haven't had a skin biopsy, but I suppose it would have the advantage of being less invasive. Biopsy of the lymph nodes in the chest is surgery (been there--very sore afterward). And lung biopsy is invasive, although thanks to Versed, I floated through it. If the skin biopsy is negative, that still doesn't mean it's not sarc, because they could have missed the sarc when they got the sample. Can anyone else speak to this issue of skin biopsy? I applaud your positive attitude. I hope that you are able to continue your life without major adjustments, no matter what the results of your tests show. If you do have sarc or another chronic disease, a positive, pro-active attitude will be very helpful. As for narcotics, it varies. I take Vicadin occasionally (2-3x/week), but for hip & thigh pain, which is supposedly from bursitis, not sarc. My worst pain is the neuropathic pain in my feet & narcotics don't help that. Others have severe pain & take a variety of meds, including Methadone. Let us know what happens with your testing & good luck! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Outcome...Date: Fri, 30 Sep 2005 22:51:11 -0000Thank you, Tracie for writing me back & for the info.No. Never had anything like it. I still don't know if I DO have it, either. I've never even HEARD of it until three months ago when I had an elevated ACE test. The second test they did two months ago was elevated even more than the 1st one. My doctor told me my "number" was 101 (the most recent test) & that "normal" is 70 or below.Regarding my appt. yesterday (the 29th): the chest x-ray they did showed a "possible" enlarged lymph node. The docs couldn't even tell me one way or the other if it WAS an actual lymph node or not! My doctor told me that it "could just be the way I'm built." ?? Okay. I PRAY that's all it is.But they want to get a skin biopsy asap. I've been having facial lesions or really bad acne for the past 9 months (since I've been ill) that I've never had b-4. I've never had a problem w/acne in my life. So my rheumatologist says she wants the biopsy INSTEAD OF another chest x-ray because that would tell them for certain if it's sarcoid.BUT...IF IT IS this strange "disease", I REFUSE to allow it to debilitate me. In fact, I will accept & acknowledge it & that it's real but that it only has a VERY TEMPORARY PLACE IN MY LIFE AND MY BODY. I won't accept illness or disease. I read a great deal on "mind/body" connections & believe in it 200%. I've got tons of suppressed rage & have had for years. It's time to GET WELL though. :-) For me, this is a challenge. Nothing more. I also believe that my Higher Power (God? sometimes!) knows what "it" or "He" is doing. I trust all will work out for the good. I do have one more question. Do ppl. w/sarcoid need to take narcotic pain meds? Just curious...Thanks again & have a great evening!April D.__________________________________________________________________ > It does, but it's hard to say what is going on until they get the blood and > ct's stuff. In our archives is an article on the brain and how it functions. > It's in normal english-- so it's easy to understand. > This disease does have a systemic inflammation, and many of run fevers daily. > If your hypothalmus is involved, it's easy for the body to not be able to > regulate it's thermostat. Also, if there is brain inflammation-- then they need > to figure out why. > Have you had sarcoidosis in the past? > > Looking forward to hearing the outcome of todays appt.> > Sincerely,> Tracie> NS Co-owner/moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Hi Rose, I had a skin biopsy when I had a subcutaneous mass on my arm. It didn't hurt. They just numbed it up a little with some anesthesia (sp?) and did a punch biopsy where they take a small specimen of the layers of your skin then they give you a few stitches to sew it up. They send it to the lab to have it looked at. The mass on my arm was a raised bump about 4 cm x 10 cm long. It was warm to the touch, red and raised. That's what confirmed that I had sarcoidosis. DebbieRose wrote: April, I haven't had a skin biopsy, but I suppose it would have the advantage of being less invasive. Biopsy of the lymph nodes in the chest is surgery (been there--very sore afterward). And lung biopsy is invasive, although thanks to Versed, I floated through it. If the skin biopsy is negative, that still doesn't mean it's not sarc, because they could have missed the sarc when they got the sample. Can anyone else speak to this issue of skin biopsy? I applaud your positive attitude. I hope that you are able to continue your life without major adjustments, no matter what the results of your tests show. If you do have sarc or another chronic disease, a positive, pro-active attitude will be very helpful. As for narcotics, it varies. I take Vicadin occasionally (2-3x/week), but for hip & thigh pain, which is supposedly from bursitis, not sarc. My worst pain is the neuropathic pain in my feet & narcotics don't help that. Others have severe pain & take a variety of meds, including Methadone. Let us know what happens with your testing & good luck! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Outcome...Date: Fri, 30 Sep 2005 22:51:11 -0000Thank you, Tracie for writing me back & for the info.No. Never had anything like it. I still don't know if I DO have it, either. I've never even HEARD of it until three months ago when I had an elevated ACE test. The second test they did two months ago was elevated even more than the 1st one. My doctor told me my "number" was 101 (the most recent test) & that "normal" is 70 or below.Regarding my appt. yesterday (the 29th): the chest x-ray they did showed a "possible" enlarged lymph node. The docs couldn't even tell me one way or the other if it WAS an actual lymph node or not! My doctor told me that it "could just be the way I'm built." ?? Okay. I PRAY that's all it is.But they want to get a skin biopsy asap. I've been having facial lesions or really bad acne for the past 9 months (since I've been ill) that I've never had b-4. I've never had a problem w/acne in my life. So my rheumatologist says she wants the biopsy INSTEAD OF another chest x-ray because that would tell them for certain if it's sarcoid.BUT...IF IT IS this strange "disease", I REFUSE to allow it to debilitate me. In fact, I will accept & acknowledge it & that it's real but that it only has a VERY TEMPORARY PLACE IN MY LIFE AND MY BODY. I won't accept illness or disease. I read a great deal on "mind/body" connections & believe in it 200%. I've got tons of suppressed rage & have had for years. It's time to GET WELL though. :-) For me, this is a challenge. Nothing more. I also believe that my Higher Power (God? sometimes!) knows what "it" or "He" is doing. I trust all will work out for the good. I do have one more question. Do ppl. w/sarcoid need to take narcotic pain meds? Just curious...Thanks again & have a great evening!April D.__________________________________________________________________ > It does, but it's hard to say what is going on until they get the blood and > ct's stuff. In our archives is an article on the brain and how it functions. > It's in normal english-- so it's easy to understand. > This disease does have a systemic inflammation, and many of run fevers daily. > If your hypothalmus is involved, it's easy for the body to not be able to > regulate it's thermostat. Also, if there is brain inflammation-- then they need > to figure out why. > Have you had sarcoidosis in the past? > > Looking forward to hearing the outcome of todays appt.> > Sincerely,> Tracie> NS Co-owner/moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Hi Rose, I had a skin biopsy when I had a subcutaneous mass on my arm. It didn't hurt. They just numbed it up a little with some anesthesia (sp?) and did a punch biopsy where they take a small specimen of the layers of your skin then they give you a few stitches to sew it up. They send it to the lab to have it looked at. The mass on my arm was a raised bump about 4 cm x 10 cm long. It was warm to the touch, red and raised. That's what confirmed that I had sarcoidosis. DebbieRose wrote: April, I haven't had a skin biopsy, but I suppose it would have the advantage of being less invasive. Biopsy of the lymph nodes in the chest is surgery (been there--very sore afterward). And lung biopsy is invasive, although thanks to Versed, I floated through it. If the skin biopsy is negative, that still doesn't mean it's not sarc, because they could have missed the sarc when they got the sample. Can anyone else speak to this issue of skin biopsy? I applaud your positive attitude. I hope that you are able to continue your life without major adjustments, no matter what the results of your tests show. If you do have sarc or another chronic disease, a positive, pro-active attitude will be very helpful. As for narcotics, it varies. I take Vicadin occasionally (2-3x/week), but for hip & thigh pain, which is supposedly from bursitis, not sarc. My worst pain is the neuropathic pain in my feet & narcotics don't help that. Others have severe pain & take a variety of meds, including Methadone. Let us know what happens with your testing & good luck! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Outcome...Date: Fri, 30 Sep 2005 22:51:11 -0000Thank you, Tracie for writing me back & for the info.No. Never had anything like it. I still don't know if I DO have it, either. I've never even HEARD of it until three months ago when I had an elevated ACE test. The second test they did two months ago was elevated even more than the 1st one. My doctor told me my "number" was 101 (the most recent test) & that "normal" is 70 or below.Regarding my appt. yesterday (the 29th): the chest x-ray they did showed a "possible" enlarged lymph node. The docs couldn't even tell me one way or the other if it WAS an actual lymph node or not! My doctor told me that it "could just be the way I'm built." ?? Okay. I PRAY that's all it is.But they want to get a skin biopsy asap. I've been having facial lesions or really bad acne for the past 9 months (since I've been ill) that I've never had b-4. I've never had a problem w/acne in my life. So my rheumatologist says she wants the biopsy INSTEAD OF another chest x-ray because that would tell them for certain if it's sarcoid.BUT...IF IT IS this strange "disease", I REFUSE to allow it to debilitate me. In fact, I will accept & acknowledge it & that it's real but that it only has a VERY TEMPORARY PLACE IN MY LIFE AND MY BODY. I won't accept illness or disease. I read a great deal on "mind/body" connections & believe in it 200%. I've got tons of suppressed rage & have had for years. It's time to GET WELL though. :-) For me, this is a challenge. Nothing more. I also believe that my Higher Power (God? sometimes!) knows what "it" or "He" is doing. I trust all will work out for the good. I do have one more question. Do ppl. w/sarcoid need to take narcotic pain meds? Just curious...Thanks again & have a great evening!April D.__________________________________________________________________ > It does, but it's hard to say what is going on until they get the blood and > ct's stuff. In our archives is an article on the brain and how it functions. > It's in normal english-- so it's easy to understand. > This disease does have a systemic inflammation, and many of run fevers daily. > If your hypothalmus is involved, it's easy for the body to not be able to > regulate it's thermostat. Also, if there is brain inflammation-- then they need > to figure out why. > Have you had sarcoidosis in the past? > > Looking forward to hearing the outcome of todays appt.> > Sincerely,> Tracie> NS Co-owner/moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Hey All, I have also had a sking biopsy. I had raised bumps on my arms neck and back. They were reddish/pink/brown kind of grainy looking. Anyway, my dermatologist numbed the area and sliced off one of the bumps on my shoulder and also took a few layers of skin. He stitched it up afterwards. It didn't hurt. He sent it to the lab and it came back positive for sarc. Hope this helps. Naa KoshieDebbie wrote: Hi Rose, I had a skin biopsy when I had a subcutaneous mass on my arm. It didn't hurt. They just numbed it up a little with some anesthesia (sp?) and did a punch biopsy where they take a small specimen of the layers of your skin then they give you a few stitches to sew it up. They send it to the lab to have it looked at. The mass on my arm was a raised bump about 4 cm x 10 cm long. It was warm to the touch, red and raised. That's what confirmed that I had sarcoidosis. DebbieRose wrote: April, I haven't had a skin biopsy, but I suppose it would have the advantage of being less invasive. Biopsy of the lymph nodes in the chest is surgery (been there--very sore afterward). And lung biopsy is invasive, although thanks to Versed, I floated through it. If the skin biopsy is negative, that still doesn't mean it's not sarc, because they could have missed the sarc when they got the sample. Can anyone else speak to this issue of skin biopsy? I applaud your positive attitude. I hope that you are able to continue your life without major adjustments, no matter what the results of your tests show. If you do have sarc or another chronic disease, a positive, pro-active attitude will be very helpful. As for narcotics, it varies. I take Vicadin occasionally (2-3x/week), but for hip & thigh pain, which is supposedly from bursitis, not sarc. My worst pain is the neuropathic pain in my feet & narcotics don't help that. Others have severe pain & take a variety of meds, including Methadone. Let us know what happens with your testing & good luck! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Outcome...Date: Fri, 30 Sep 2005 22:51:11 -0000Thank you, Tracie for writing me back & for the info.No. Never had anything like it. I still don't know if I DO have it, either. I've never even HEARD of it until three months ago when I had an elevated ACE test. The second test they did two months ago was elevated even more than the 1st one. My doctor told me my "number" was 101 (the most recent test) & that "normal" is 70 or below.Regarding my appt. yesterday (the 29th): the chest x-ray they did showed a "possible" enlarged lymph node. The docs couldn't even tell me one way or the other if it WAS an actual lymph node or not! My doctor told me that it "could just be the way I'm built." ?? Okay. I PRAY that's all it is.But they want to get a skin biopsy asap. I've been having facial lesions or really bad acne for the past 9 months (since I've been ill) that I've never had b-4. I've never had a problem w/acne in my life. So my rheumatologist says she wants the biopsy INSTEAD OF another chest x-ray because that would tell them for certain if it's sarcoid.BUT...IF IT IS this strange "disease", I REFUSE to allow it to debilitate me. In fact, I will accept & acknowledge it & that it's real but that it only has a VERY TEMPORARY PLACE IN MY LIFE AND MY BODY. I won't accept illness or disease. I read a great deal on "mind/body" connections & believe in it 200%. I've got tons of suppressed rage & have had for years. It's time to GET WELL though. :-) For me, this is a challenge. Nothing more. I also believe that my Higher Power (God? sometimes!) knows what "it" or "He" is doing. I trust all will work out for the good. I do have one more question. Do ppl. w/sarcoid need to take narcotic pain meds? Just curious...Thanks again & have a great evening!April D.__________________________________________________________________ > It does, but it's hard to say what is going on until they get the blood and > ct's stuff. In our archives is an article on the brain and how it functions. > It's in normal english-- so it's easy to understand. > This disease does have a systemic inflammation, and many of run fevers daily. > If your hypothalmus is involved, it's easy for the body to not be able to > regulate it's thermostat. Also, if there is brain inflammation-- then they need > to figure out why. > Have you had sarcoidosis in the past? > > Looking forward to hearing the outcome of todays appt.> > Sincerely,> Tracie> NS Co-owner/moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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