Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Toni, Have you gone to the NS website- http://www.elderwyn.com/neurosarcoidosis/. This is an excellant document to print out and take to your MD's. It gives them a starting place for tests that can help you, it gives them info on drug treatment options, and it is in simple language that we can understand. Toni, it is possible to have NS without having lung involvement. It is possible to have it start anywhere throughout your body, and statistically- it will resolve by itself. That's the belief anyhow. For those of us with NS, it's important that we get treatment started. Even if that means starting on Prednisone. If you can't handle prednisone, then there are other options. All of that is explained in the link I gave you above. The fact that your pain is transient, that is going from place to place in your body- generally means that the sarcoidosis is probably in your bloodstream. What this means is that there are actual granulomas in the blood cells themselves. This usually shows up as increased ACE (angiotensin converting enzymes) levels, or a high CRP (c Reactive Protein) level. This is confirmed by a simple blood test. CRP sometimes shows up in the blood, sometimes they have to do a lumbar puncture (spinal tap) to test this level. Toni, if there is something that you don't understand, send us an email and ask us - what is this, what does it mean? We are more than willing to answer your questions, and if we don't know the answer, we'll try to find the answer. Does your MD know that you're only sleeping 2 hrs at a time? I'm sure this is because of the pain. Ambien, a sleeping pill, works very well. And you don't have the hangover effect with it. What are they giving you for the pain? Do they have you on prednisone or anything for the inflammation? Motrin, Ibuprofen, Tylenol, can all help if the inflammation is mild to moderate. just recently sent out an entire set of posts regarding being tested (blood tests and sputum- the gunk you cough up from your lungs) for DNA. These tests check for bacterial, fungal, viral, etc. infections. These types of infections-- opportunistic infections- OI - are generally very slow growing, so they take weeks before the lab has the results. Let us know how we can help, again, no questions are too dumb to ask-- we all started the same way you are starting-- unfortunately, we too have had to learn along the way. Hugs to you, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Toni, Have you gone to the NS website- http://www.elderwyn.com/neurosarcoidosis/. This is an excellant document to print out and take to your MD's. It gives them a starting place for tests that can help you, it gives them info on drug treatment options, and it is in simple language that we can understand. Toni, it is possible to have NS without having lung involvement. It is possible to have it start anywhere throughout your body, and statistically- it will resolve by itself. That's the belief anyhow. For those of us with NS, it's important that we get treatment started. Even if that means starting on Prednisone. If you can't handle prednisone, then there are other options. All of that is explained in the link I gave you above. The fact that your pain is transient, that is going from place to place in your body- generally means that the sarcoidosis is probably in your bloodstream. What this means is that there are actual granulomas in the blood cells themselves. This usually shows up as increased ACE (angiotensin converting enzymes) levels, or a high CRP (c Reactive Protein) level. This is confirmed by a simple blood test. CRP sometimes shows up in the blood, sometimes they have to do a lumbar puncture (spinal tap) to test this level. Toni, if there is something that you don't understand, send us an email and ask us - what is this, what does it mean? We are more than willing to answer your questions, and if we don't know the answer, we'll try to find the answer. Does your MD know that you're only sleeping 2 hrs at a time? I'm sure this is because of the pain. Ambien, a sleeping pill, works very well. And you don't have the hangover effect with it. What are they giving you for the pain? Do they have you on prednisone or anything for the inflammation? Motrin, Ibuprofen, Tylenol, can all help if the inflammation is mild to moderate. just recently sent out an entire set of posts regarding being tested (blood tests and sputum- the gunk you cough up from your lungs) for DNA. These tests check for bacterial, fungal, viral, etc. infections. These types of infections-- opportunistic infections- OI - are generally very slow growing, so they take weeks before the lab has the results. Let us know how we can help, again, no questions are too dumb to ask-- we all started the same way you are starting-- unfortunately, we too have had to learn along the way. Hugs to you, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Hi everyone, I think I misunderstand or do not fully understand a lot of the postings on this list because I am just very newly diagnosed. And even my rheumatologist, who has diagnosed neurosarcoid, and the neurologists can't agree on that. I have had pretty much all the tests done they can think of with a lesion showing up on an MRI scan typical of neurosarcoid. They are my rheumatologists words. They haven't done a lung biopsy because my chest x-rays and ct scans have all come back normal. My rheumatologist informed me at my last visit that I am the first case of neurosarcoid he has treated. I have been sick now for 9 months, not getting any better, and the pain and illness moving from one part of my body to the other. I still haven't been started on any treatment except for medications for the pain. I really don't think my doctors have any idea of what to make of anything I have told them or what they have found. My abdominal scan showed what they called a fatty liver but was not followed up because it wasn't considered severe enough, my MRI showed a lesion on the VII cranial nerve typical of neurosarcoid, which caused me to have a left hand side Bells palsy, which is slowly improving. My body is wracked with pain 24 hours a day 7 days a week, the fatigue is almost unbearable, I have swollen joints and muscles which seem to migrate around to different parts at will, a few weeks ago it was my ankles, at the moment it is my elbows. I don't sleep at all for more than 2 hours at night so together with the fatigue I already feel, I am totally wiped out during the days. Shopping, washing, dishwashing or any other household chore is absolutely exhausting, that's when I can find the energy to even get out of bed and attempt to do them. My lumbar puncture found that the pressure in my spinal fluid was elevated. Of course the blood tests have shown inflammation in my blood but not enough to diagnose polymyalgia rheumatica. The initial diagnosis was fibromyalgia before I developed all of these other strange symptoms. Now they are still trying to come to an agreed diagnosis. All the while I am trying to live with this horrible pain and fatigue, not being able to work or enjoy day to day life with my children, and pretty much living a miserable existence as compared to the live I had before I got sick. So a lot of the postings I read here are very confusing especially when they contain a lot of medical terminology and I do not understand them at all. But I will keep on reading for my own information all your wonderful and informative posts and keep asking my doctors questions at every visit. Thank you all and wishing you all the best luv Toni Quote Link to comment Share on other sites More sharing options...
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