Guest guest Posted June 15, 2007 Report Share Posted June 15, 2007 can anyone out there help me. I am trying to get a DX and I need to know the correct tests that the Dr. needs to do. I have sarc. however, I am SURE..(95%) that I now have neurosarc. Hi Lori, you've come to the right place to help you get the care and diagnosis you need. You say you have sarc-- pulmonary I'm assuming? Is it proved by biopsy? What symptoms of NS are you having? You should have a CBC, ACE (angiotension converting enzymes), CRP (C-reactive protein) calcium levels in both blood and urine, CT's and MRI's with and w/out contrast of your brain and spine done. A spinal tap also would be in order. IgE and ANA tests are also helpful. NS is a diagnosis of elimination. When they've ruled out all the other autoimmune diseases, they are left with NS. NS is so similar to MS-- as well as Rheumatoid Arthritis, Diabetes, Peripheral Neuropathy and Dementia-- as well as Lupus-- that they have to address those - and rule them out-- then if you do have a confirmed biopsy (muscle, lung, skin, lymph are all possibilites) it leaves us with NS. Neuropathy can be diagnosed with EMG and EEG studies. Dementia and cognitive changes can be diagnosed by Neuropsych testing. Each individual component of Neuropsych Testing requires a specific part of the brain to complete the task- and if you can't do the task== it tells them what parts of the brain are being effected. Sarc doesn't always give us the granulomas in the brain that are seen on MRI or CT's-- it can be caused by vasculitis---- and whatever part of the brain is being blocked by an inflammed blood vessel- can make the tasks that are controlled by that part impossible to do. This is one of the most important tests to have done! EKG's are important to check the heart- and a chest xray can show if the heart is enlarged. If you are having any cardiac signs, atrial fib (rapid heartbeat), etc-- can lead you into a heart workup. There is an excellant site that I recommend-- FSR- the Foundation for Sarcoidosis research, www.stopsarcoidosis.org; that will have a brochure you can print out-- or order and take to the MD with you. It lists alot of the tests, and xrays, labs, etc-- and is excellant. In our ARCHIVES and LINKS- we have many articles and posts that can help you explain to the MD what is happening, and why you think you've developed NS. You can print them out and take them to share. You've come to a wonderful group of sarcies, and we're here to help. We've been where you are-- and many of our members are going thru what you're going thru now-- so you aren't alone in this. Let us know how we can help further, and know that you can vent, cry, laugh and whatever--- Sincerely, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 thank you for listening. first off in jan they thought that i was having a TIA/stroke. my face on the left was very drawn and left arm almost numb. well went to the ER and they did a CT they said it was a TIA and gave me morphine and let me go home. my fiance is a RN as I am so they said i would probably rest better at home. ok, then after that I can't get my words out, it's like i know what i want to say but they just don't come out ok, wheni get tired says that i slur my words even worse. then there is the pain!!!! it was on the left side to begin with now it's all over. it;s like in my joints. I am on 4 narcotics and nothing helps. the only things that helps take off the edge is when the dr will give me a steroid. but he doesn't like to give that because of the side effects!! I also have neropathy in both legs. i am always tired, i get hot very easy then i have a hard time getting cold off. so many things i probably am forgtting. i am having a hard time even typing this tonight, so if it's messed up iam sorry. thanks for any and all your help, Lorietiodaat@... wrote: In a message dated 6/15/07 10:38:30 PM Pacific Daylight Time, nurselorielynn (AT) yahoo (DOT) com writes: can anyone out there help me. I am trying to get a DX and I need to know the correct tests that the Dr. needs to do. I have sarc. however, I am SURE..(95%) that I now have neurosarc. Hi Lori,you've come to the right place to help you get the care and diagnosis you need. You say you have sarc-- pulmonary I'm assuming? Is it proved by biopsy?What symptoms of NS are you having?You should have a CBC, ACE (angiotension converting enzymes), CRP (C-reactive protein) calcium levels in both blood and urine, CT's and MRI's with and w/out contrast of your brain and spine done. A spinal tap also would be in order. IgE and ANA tests are also helpful.NS is a diagnosis of elimination. When they've ruled out all the other autoimmune diseases, they are left with NS. NS is so similar to MS-- as well as Rheumatoid Arthritis, Diabetes, Peripheral Neuropathy and Dementia-- as well as Lupus-- that they have to address those - and rule them out-- then if you do have a confirmed biopsy (muscle, lung, skin, lymph are all possibilites) it leaves us with NS.Neuropathy can be diagnosed with EMG and EEG studies. Dementia and cognitive changes can be diagnosed by Neuropsych testing. Each individual component of Neuropsych Testing requires a specific part of the brain to complete the task- and if you can't do the task== it tells them what parts of the brain are being effected. Sarc doesn't always give us the granulomas in the brain that are seen on MRI or CT's-- it can be caused by vasculitis---- and whatever part of the brain is being blocked by an inflammed blood vessel- can make the tasks that are controlled by that part impossible to do. This is one of the most important tests to have done! EKG's are important to check the heart- and a chest xray can show if the heart is enlarged. If you are having any cardiac signs, atrial fib (rapid heartbeat), etc-- can lead you into a heart workup. There is an excellant site that I recommend-- FSR- the Foundation for Sarcoidosis research, www.stopsarcoidosis.org; that will have a brochure you can print out-- or order and take to the MD with you. It lists alot of the tests, and xrays, labs, etc-- and is excellant. In our ARCHIVES and LINKS- we have many articles and posts that can help you explain to the MD what is happening, and why you think you've developed NS. You can print them out and take them to share.You've come to a wonderful group of sarcies, and we're here to help. We've been where you are-- and many of our members are going thru what you're going thru now-- so you aren't alone in this. Let us know how we can help further, and know that you can vent, cry, laugh and whatever--- Sincerely,TracieNS Co-owner/moderator**************************************See what's free at http://www.aol.com. ls the life I'am living worth HIS dying???? Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2007 Report Share Posted June 16, 2007 Lorie, I see Tracie gave you excellent information as usual, she is the best! I am taking lyrica, it really helps the nerve pain, for the joints I swear by the MSM, I take it in a tablet form, I know you can get powder too, with this two I have been able to go pain medication, I don’t even remember the last time I took a “pain” pill other then Aspirin, which I find helps me I have pain in like one area not all over! Hopefully you can find some relief, my neuro said that all the vicodan in the world would not take away the neuro pain, boy that was true but the lyrica is taking away the neuro pain. I have numbness on my left side too, almost all the time, worse when I’m tired, I have trouble recalling words and getting them from my brain to my mouth, I know what I want to say, but can say it! I know how you feel! Hope you get some relief soon. Marla Marla Bramer " Faith sees the invisible, believes the incredible and receives the impossible " From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Lorie-Lynn Sent: Saturday, June 16, 2007 5:53 PM To: Neurosarcoidosis Subject: Re: Tests for DX thank you for listening. first off in jan they thought that i was having a TIA/stroke. my face on the left was very drawn and left arm almost numb. well went to the ER and they did a CT they said it was a TIA and gave me morphine and let me go home. my fiance is a RN as I am so they said i would probably rest better at home. ok, then after that I can't get my words out, it's like i know what i want to say but they just don't come out ok, wheni get tired says that i slur my words even worse. then there is the pain!!!! it was on the left side to begin with now it's all over. it;s like in my joints. I am on 4 narcotics and nothing helps. the only things that helps take off the edge is when the dr will give me a steroid. but he doesn't like to give that because of the side effects!! I also have neropathy in both legs. i am always tired, i get hot very easy then i have a hard time getting cold off. so many things i probably am forgtting. i am having a hard time even typing this tonight, so if it's messed up iam sorry. thanks for any and all your help, Lorie tiodaat (AT) aol (DOT) com wrote: In a message dated 6/15/07 10:38:30 PM Pacific Daylight Time, nurselorielynn (AT) yahoo (DOT) com writes: can anyone out there help me. I am trying to get a DX and I need to know the correct tests that the Dr. needs to do. I have sarc. however, I am SURE..(95%) that I now have neurosarc. Hi Lori, you've come to the right place to help you get the care and diagnosis you need. You say you have sarc-- pulmonary I'm assuming? Is it proved by biopsy? What symptoms of NS are you having? You should have a CBC, ACE (angiotension converting enzymes), CRP (C-reactive protein) calcium levels in both blood and urine, CT's and MRI's with and w/out contrast of your brain and spine done. A spinal tap also would be in order. IgE and ANA tests are also helpful. NS is a diagnosis of elimination. When they've ruled out all the other autoimmune diseases, they are left with NS. NS is so similar to MS-- as well as Rheumatoid Arthritis, Diabetes, Peripheral Neuropathy and Dementia-- as well as Lupus-- that they have to address those - and rule them out-- then if you do have a confirmed biopsy (muscle, lung, skin, lymph are all possibilites) it leaves us with NS. Neuropathy can be diagnosed with EMG and EEG studies. Dementia and cognitive changes can be diagnosed by Neuropsych testing. Each individual component of Neuropsych Testing requires a specific part of the brain to complete the task- and if you can't do the task== it tells them what parts of the brain are being effected. Sarc doesn't always give us the granulomas in the brain that are seen on MRI or CT's-- it can be caused by vasculitis---- and whatever part of the brain is being blocked by an inflammed blood vessel- can make the tasks that are controlled by that part impossible to do. This is one of the most important tests to have done! EKG's are important to check the heart- and a chest xray can show if the heart is enlarged. If you are having any cardiac signs, atrial fib (rapid heartbeat), etc-- can lead you into a heart workup. There is an excellant site that I recommend-- FSR- the Foundation for Sarcoidosis research, www.stopsarcoidosis.org; that will have a brochure you can print out-- or order and take to the MD with you. It lists alot of the tests, and xrays, labs, etc-- and is excellant. In our ARCHIVES and LINKS- we have many articles and posts that can help you explain to the MD what is happening, and why you think you've developed NS. You can print them out and take them to share. You've come to a wonderful group of sarcies, and we're here to help. We've been where you are-- and many of our members are going thru what you're going thru now-- so you aren't alone in this. Let us know how we can help further, and know that you can vent, cry, laugh and whatever--- Sincerely, Tracie NS Co-owner/moderator ************************************** See what's free at http://www.aol.com. ls the life I'am living worth HIS dying???? Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2007 Report Share Posted June 19, 2007 Hi Lori, Welcome to the family. We have so many wonderful people in this group, all on the same journey. I totally understand the fatigue--way past extreme exhaustion- so much so that you need a nap following waking up, not to mention a three hour one following a shower... I'm concerned that your MD doesn't even want to put you on the steroids-- as that is first line approach. He's of the mind-thought that sarcoidosis will not require treatment and go away on it's own in 2-3 yrs. What we've found thru our process is that when the sarc is in more than one body system, you need treatment. If that means starting with Prednisone, then at least the you've started. we all know that the pred is going to have you put on weight- fast. We know that it causes osteoporosis, hardening of the arteries, many of us had the psychosis that goes with the high dose steroid use-- and you generally become the energizer bunny. HOwever, it's speed with no real direction. There are alteratives to prednisone. Plaquenil can really help, as does Methotrexate and Arava or Imuran. It is so important to get the systemic inflammation down, that is attacking your joints and ligaments. When sarc does effect the brain, the neurosystem, it's not at all uncommon that the you develop Bell's Palsy-- which is what you are describing. This wait and see approach is dangerous to you-- you need some form of treatment. In our ARCHIVES AND LINKS-- you will find a host of information that you can take with you to your MD's and have them run the tests-- and get you started on something. Scroll down for the address of the ARCHIVES, it is at the bottom section of this and every email from the group. I do hope this helps, Tracie NS Co-owner/moderator************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
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