Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 Darrin, If it makes you feel any better. I had a "suspicious" spot in my lung for about 5 years that they watched before I had a severe flare up and then came the Ct scan that they told me was Cancer and the PET that confirmed it and it wasn't until I had the Biopsy that they diagnosed sarcoid. I had 5 years of URI's, pneumonia etc until it all broke lose. don't know if this helps but it's a long strange road. Mitch Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc. All tests for ms came back negative. They did a chest x ray, then a ct. This led them to follow up with a pet. I have a 2 cm lesion in one lung. It is suspicious for cancer but they can't tell if it really is or it's just an old lesion of some kind. They suggested a follow up ct in the near future to see whether it is growing. If it's growing it may be something to be concerned about, otherwise it may just be old news already fixed by my immune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lung sarc. My ms doc finished her ms part of the job and appropriately dumped me back on my family physician. I've been doing much better lately. My more profound neuro symptoms such as muscle twitches, severe difficulty walking, pain, confusion, very severe fatigue, etc. have mostly abated leavi ng me just weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test still rising. I'm confused because a spot on my lung, even if it were to turn out to be cancerous, doesn't seem to address either the ACE levels (typically associated with lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would it seem to account for the dry eye and mouth issues that've plagued me for years along with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering how much difficulty I had when I could barely walk. Following up on the ct and otherwise ignoring the rest of it until I have another flare see ms like the path of least resistance at the moment. Sorry for the length of this post but I hate answering questions without background info. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers, Darrin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2010 Report Share Posted May 20, 2010 Darrin, I have written to you before because our stories are very similar and I just wanted to say sorry you are having to go through this because I know how frustrating it is. I am still with my MS neurologist, because in Australia there are no neurosarcoid specialists so it makes sense to say within the neuroscience clinic of my hospital that has been treating me for years. Are you in the States? Could you get an appointment with a sarcoidosis clinic? I'm probably not much help here, but wanted you to know I really do feel for you, it's so frustrating and scary. Rach > > > Hello, > > > > I was operating under the assumption I either had ms or neurosarc. > All tests for ms came back negative. They did a chest x ray, then a ct. > This led them to follow up with a pet. I have a 2 cm lesion in one lung. > It is suspicious for cancer but they can't tell if it really is or it's just an > old lesion of some kind. They suggested a follow up ct in the near future > to see whether it is growing. If it's growing it may be something to be > concerned about, otherwise it may just be old news already fixed by my > immune system. They said the pet was not a classical presentation of > sarcoidosis apparently meaning it showed nothing consistent with lung > sarc. > > My ms doc finished her ms part of the job and appropriately dumped me > back on my family physician. I've been doing much better lately. My more > profound neuro symptoms such as muscle twitches, severe difficulty walking, > pain, confusion, very severe fatigue, etc. have mostly abated leaving me > just weaker and more tired than I used to be, especially when walking. > > My ACE and calcium levels are elevated and according to the last test still > rising. > > I'm confused because a spot on my lung, even if it were to turn out to be > cancerous, doesn't seem to address either the ACE levels (typically associated > with lymphoma but not mentioned for other cancers) or the neurological > issues (though paraneoplastic syndrome could account for those). Nor would it > seem to account for the dry eye and mouth issues that've plagued me for years > along with a salivary gland that keeps swelling up and then going down again. > > I'm tired of fighting with the doctors and figure my chances of getting taken > seriously while I'm in remission from whatever I have are minimal considering how > much difficulty I had when I could barely walk. Following up on the ct and otherwise > ignoring the rest of it until I have another flare seems like the path of least resistance > > at the moment. > > > > Sorry for the length of this post but I hate answering questions without background > > info. My question is whether anyone has been through a similar experience or has > > suggestions as to a course of action if any. > > > > > > Cheers, > > Darrin > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 Darrin, That lesion in your lungs is probably sarcoidosis. Did they mention a "ground glass" like process of granulomas in the lungs. Have you ever had a bronchoscopy? That is an easy way to determine what this lesion is-- and it would give you some peace of mind to know what is going on. ACE levels are often high in many of the autoimmune diseases-- and it is not specific to sarcoidosis. CRP--C Reactive Protein is another blood test that will tell them that you have inflammation somewhere-- but again is not specific to say sarcoidosis. Increased calcium levels can also be high due to various autoimmune processes. Again, not specific to sarcoidosis. That is the problem-- to date, there is no single or even multiple tests that say you have sarcoidosis-- only a biopsy of a specific spot-- that lesion in the lungs, is how they can say positive that what is going on is sarcoidosis. I know that your doctors are thinking that if the lesion doesn't change-- maybe you'll be one of the lucky ones that have your sarcoidosis resolve itself spontaneously. Actually, studies now show that if they don't do the "knee jerk" response of handing you a script for prednisone- you stand a greater chance of sarcoidosis NOT becoming a chronic or multi-systemic issue. The other part is that the docs are also thinking that the neuro symptoms you have are not linked to sarcoidosis-- because they don't realize that there is an interconnectiveness. There is a sister site-- www.stopsarcoidosis.com that has brochures on sarc, cardiac sarc, and neurosarc, as well as the value and pitfalls of prednisone use-- and the first one of each is free. Much of the info that they have in the Sarcoidosis and your body brochure is borrowed language from posts we did here. Another great site to get answers from is www.sarcoidosissharma.com. Dr. Sharma is a true "sarcoidologist" and his practice has been focused on this disease in so many ways. He is a true expert in this disease and was USC-LA's head MD on the Infliximab (Remicade) and pulmonary and ocular sarcoidosis clinical trial. (That is the trial I went thru to get on the Remicade.) He and Dr. Baughmann were and are the top 2 MD's in the US that specialize in sarc. They both understand the systemic elements of this disease. Print out the information from these sites and share them with your docs. I keep the brochures with me for all my docs. I am fortunate that my docs have been willing to read them-- and the response is always "I didn't know sarcoidosis did that..." Since they are written (reviewed at least) by M.D.'s-- they carry a bit more weight than what we can explain to them-- after all, we are the "patient." (Yep, it's sarcasm.) IF the next scan doesn't show change-- request a "gallium" scan-- in fact, maybe they can do that instead of the normal ct--- the "gallium" lights up areas that may be microscopic granulomas that a standard scan will show-- but the radiologists read our scans pretty fast-- and things can be missed. Gallium scans are older ways than PET's or the new scanners-- but they can really be an excellant marker. I know the "wait and see" is maddening-- because you still feel like crap-- and feel like no one is taking you seriously. I wish I had more answers-- it is part of the journey-- and it would be so helpful and reassuring if you could put a name to what is going on-- instead of typing in all your symptoms, and hoping that the answer appears. Do take care, Tracie NS Co-owner/moderator To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, May 20, 2010 7:30:58 PMSubject: Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 hi darrin, have they done a skin biopsy on you to check for small fiber neuropathy? that is how i was diagnosed with neurosarc of the central nervous system. i would ask your neuro doctor to do this. also with the dry eyes and mouth have they tested you for shogren's syndrome google both of these things and you will surprised. we as patients sometimes have to demand these test! be a voice and speak up! good luck to you and let us know how it goes! ~~~~~~~~~barb To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, May 20, 2010 10:30:58 PMSubject: Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistance at the moment. Sorry for the length of this post but I hate answering questions without background info. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers, Darrin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 Hi Rach, I'm a few hours south of Seattle in the States. As far as I know there isn't a sarc center here but there are a couple of doctors who have some experience with it. Switching doctors has been a problem because I lost my job due to being unable to perform the strenuous tasks required and no longer have insurance. I've been utilizing charity grant programs. They don't cover tests though and the xrays, cts, and pets have resulted in bills with a lot of zeros. It is also difficult to switch providers (and often even to find one who will take charity grant care) without going through that whole approval process in addition to the things everyone else goes through. That said, you make a great point. A consult with a sarc doctor might tell me a lot and be a lot less expensive than the things that haven't worked thus far. If he thinks it's warranted a biopsy of the salivary gland I keep having trouble with might not be all that bad either. If positive, better than a lung or nerve biopsy anyway. Sometimes it all seems overwhelming but you helped me break off a little chunk I can do. That's just what I was looking for. It's hard to say what's better to receive, help, or to know other people have similar experiences. Be well, Darrin To: Neurosarcoidosis From: stiks11@...Date: Fri, 21 May 2010 05:14:53 +0000Subject: Re: Suggestions? Darrin,I have written to you before because our stories are very similar and I just wanted to say sorry you are having to go through this because I know how frustrating it is. I am still with my MS neurologist, because in Australia there are no neurosarcoid specialists so it makes sense to say within the neuroscience clinic of my hospital that has been treating me for years.Are you in the States? Could you get an appointment with a sarcoidosis clinic?I'm probably not much help here, but wanted you to know I really do feel for you, it's so frustrating and scary.Rach>> > Hello,> > > > I was operating under the assumption I either had ms or neurosarc.> All tests for ms came back negative. They did a chest x ray, then a ct.> This led them to follow up with a pet. I have a 2 cm lesion in one lung.> It is suspicious for cancer but they can't tell if it really is or it's just an> old lesion of some kind. They suggested a follow up ct in the near future> to see whether it is growing. If it's growing it may be something to be> concerned about, otherwise it may just be old news already fixed by my> immune system. They said the pet was not a classical presentation of > sarcoidosis apparently meaning it showed nothing consistent with lung> sarc.> > My ms doc finished her ms part of the job and appropriately dumped me> back on my family physician. I've been doing much better lately. My more> profound neuro symptoms such as muscle twitches, severe difficulty walking,> pain, confusion, very severe fatigue, etc. have mostly abated leaving me> just weaker and more tired than I used to be, especially when walking.> > My ACE and calcium levels are elevated and according to the last test still> rising.> > I'm confused because a spot on my lung, even if it were to turn out to be> cancerous, doesn't seem to address either the ACE levels (typically associated> with lymphoma but not mentioned for other cancers) or the neurological > issues (though paraneoplastic syndrome could account for those). Nor would it> seem to account for the dry eye and mouth issues that've plagued me for years> along with a salivary gland that keeps swelling up and then going down again.> > I'm tired of fighting with the doctors and figure my chances of getting taken > seriously while I'm in remission from whatever I have are minimal considering how> much difficulty I had when I could barely walk. Following up on the ct and otherwise> ignoring the rest of it until I have another flare seems like the path of least resistance> > at the moment.> > > > Sorry for the length of this post but I hate answering questions without background> > info. My question is whether anyone has been through a similar experience or has > > suggestions as to a course of action if any.> > > > > > Cheers,> > Darrin> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2010 Report Share Posted May 21, 2010 Hi Mitch, Yes, it helps. Mine seems to be a classic story many with sarc share. For me some neuro symptoms came first which I mistakenly attributed to an apparently, from mri, nonexistent bad back. Then one summer my ankles and feet swelled up like balloons. On through classic neurosarc symptoms from there. With symptoms for a decade or two you'd think if it was cancer I'd be dead long ago. Oddly I'm not all that worried about a cancer or a neurosarc diagnosis because I'm already living with it. What I am worried about is how to support myself financially for the next 5 or 10 year without a diagnosis. For that reason I hope another flare comes sooner rather than later for diagnostic reasons. Thanks for sharing your experiences! Darrin To: Neurosarcoidosis From: mjcv29a@...Date: Thu, 20 May 2010 22:55:13 -0400Subject: Re: Suggestions? Darrin, If it makes you feel any better. I had a "suspicious" spot in my lung for about 5 years that they watched before I had a severe flare up and then came the Ct scan that they told me was Cancer and the PET that confirmed it and it wasn't until I had the Biopsy that they diagnosed sarcoid. I had 5 years of URI's, pneumonia etc until it all broke lose. don't know if this helps but it's a long strange road. Mitch Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leavi ng mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare see ms like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2010 Report Share Posted May 22, 2010 Thanks. Was hoping to avoid as many biopsies as possible but it now seems the most productive route to go. Cheers, Darrin To: Neurosarcoidosis From: beautybarnweber@...Date: Fri, 21 May 2010 04:40:41 -0700Subject: Re: Suggestions? hi darrin, have they done a skin biopsy on you to check for small fiber neuropathy? that is how i was diagnosed with neurosarc of the central nervous system. i would ask your neuro doctor to do this. also with the dry eyes and mouth have they tested you for shogren's syndrome google both of these things and you will surprised. we as patients sometimes have to demand these test! be a voice and speak up! good luck to you and let us know how it goes! ~~~~~~~~~barb To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, May 20, 2010 10:30:58 PMSubject: Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2010 Report Share Posted May 22, 2010 Thanks. Printing out info and sharing it with doctors is a great idea. SED rate, cell counts, ANA, and other tests for other immune diseases have come out all negative. Sarc seems like not just the only thing left but also the only option that explains all my symptoms without introducing the idea of multiple conditions. From everything I've read I've come to hate the idea of Prednisone. If they try to put me on it I'll be kicking and screaming. You're making me wonder why they don't go straight to the bronchoscopy instead of another scan. That and a couple of other biopsies may be the way to go. Wondering now whether if they biopsy my salivary gland can they take a little extra skin and check for sfm at the same time. Sounds like a good thing to ask. Cheers, Darrin To: Neurosarcoidosis From: tiodaat2001@...Date: Thu, 20 May 2010 23:48:41 -0700Subject: Re: Suggestions? Darrin, That lesion in your lungs is probably sarcoidosis. Did they mention a "ground glass" like process of granulomas in the lungs. Have you ever had a bronchoscopy? That is an easy way to determine what this lesion is-- and it would give you some peace of mind to know what is going on. ACE levels are often high in many of the autoimmune diseases-- and it is not specific to sarcoidosis. CRP--C Reactive Protein is another blood test that will tell them that you have inflammation somewhere-- but again is not specific to say sarcoidosis. Increased calcium levels can also be high due to various autoimmune processes. Again, not specific to sarcoidosis. That is the problem-- to date, there is no single or even multiple tests that say you have sarcoidosis-- only a biopsy of a specific spot-- that lesion in the lungs, is how they can say positive that what is going on is sarcoidosis. I know that your doctors are thinking that if the lesion doesn't change-- maybe you'll be one of the lucky ones that have your sarcoidosis resolve itself spontaneously. Actually, studies now show that if they don't do the "knee jerk" response of handing you a script for prednisone- you stand a greater chance of sarcoidosis NOT becoming a chronic or multi-systemic issue. The other part is that the docs are also thinking that the neuro symptoms you have are not linked to sarcoidosis-- because they don't realize that there is an interconnectiveness. There is a sister site-- www.stopsarcoidosis.com that has brochures on sarc, cardiac sarc, and neurosarc, as well as the value and pitfalls of prednisone use-- and the first one of each is free. Much of the info that they have in the Sarcoidosis and your body brochure is borrowed language from posts we did here. Another great site to get answers from is www.sarcoidosissharma.com. Dr. Sharma is a true "sarcoidologist" and his practice has been focused on this disease in so many ways. He is a true expert in this disease and was USC-LA's head MD on the Infliximab (Remicade) and pulmonary and ocular sarcoidosis clinical trial. (That is the trial I went thru to get on the Remicade.) He and Dr. Baughmann were and are the top 2 MD's in the US that specialize in sarc. They both understand the systemic elements of this disease. Print out the information from these sites and share them with your docs. I keep the brochures with me for all my docs. I am fortunate that my docs have been willing to read them-- and the response is always "I didn't know sarcoidosis did that..." Since they are written (reviewed at least) by M.D.'s-- they carry a bit more weight than what we can explain to them-- after all, we are the "patient." (Yep, it's sarcasm.) IF the next scan doesn't show change-- request a "gallium" scan-- in fact, maybe they can do that instead of the normal ct--- the "gallium" lights up areas that may be microscopic granulomas that a standard scan will show-- but the radiologists read our scans pretty fast-- and things can be missed. Gallium scans are older ways than PET's or the new scanners-- but they can really be an excellant marker. I know the "wait and see" is maddening-- because you still feel like crap-- and feel like no one is taking you seriously. I wish I had more answers-- it is part of the journey-- and it would be so helpful and reassuring if you could put a name to what is going on-- instead of typing in all your symptoms, and hoping that the answer appears. Do take care, Tracie NS Co-owner/moderator To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, May 20, 2010 7:30:58 PMSubject: Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2010 Report Share Posted May 22, 2010 Darrin, Pred is great for immediate symptom control; many of us have periodic "pulses" or "bursts" of pred or similar corticosteroids. For instance, uveitis, or inflammation of the eye, is a critical situation that needs immediate control. And 2-3 times a year I take a Pred dos-pak (decreasing doses over several days) for "reactive airway disease," fancy word for asthma. The real problem comes with long-term use, especially higher doses. Drs. Sharma & Baughman will often work with local docs in recommending treatment, when it's not feasible to travel to a major sarc center. I don't know if he would still do it, but the first time I saw Baughman (in Cincinnati), I was uninsured. I kept waiting for a bill & finally called the clinic. I was told I didn't owe anything. Another sarc patient told me he did the same thing for her, just waived his fee. Now they probably can't waive testing, but most hospitals & many physician practices will write off a significant part of the bill if you provide income info. Both of my daughters have benefited from this practice. It must be very frustrating trying to choose the optimal testing, the most bang for your buck basically. Then you are trying to factor in the safety issue. I guess I lean toward the lung biopsy, partly by personal bias (it was a piece of cake for me; not for everyone, obviously), and the risk seemed more acceptable to me. CT scans contain a significant amount of radiation, considerably more than a chest xray, and many organizations such as the AMA are recommending closer looks before doing so many CTs. Lots to think about, let alone decide. Just writing this stuff has made me tired & my brain fuzzy. Just continue to gather & sift information, ask questions of the group, keep records of your q & a's, consider requesting input from one of the sarc gurus (your local doc will have to contact them, but you can initiate the process), and roll the dice. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: neurosarcoidosis From: gphx@...Date: Sat, 22 May 2010 00:48:56 -0700Subject: RE: Suggestions? Thanks. Printing out info and sharing it with doctors is a great idea. SED rate, cell counts, ANA, and other tests for other immune diseases have come out all negative.Sarc seems like not just the only thing left but also the only option that explains all mysymptoms without introducing the idea of multiple conditions. From everything I've read I've come to hate the idea of Prednisone. If they try to put me on it I'llbe kicking and screaming. You're making me wonder why they don't go straight to the bronchoscopy instead of another scan.That and a couple of other biopsies may be the way to go. Wondering now whether if they biopsymy salivary gland can they take a little extra skin and check for sfm at the same time. Sounds likea good thing to ask. Cheers,Darrin To: Neurosarcoidosis From: tiodaat2001@...Date: Thu, 20 May 2010 23:48:41 -0700Subject: Re: Suggestions? Darrin, That lesion in your lungs is probably sarcoidosis. Did they mention a "ground glass" like process of granulomas in the lungs. Have you ever had a bronchoscopy? That is an easy way to determine what this lesion is-- and it would give you some peace of mind to know what is going on. ACE levels are often high in many of the autoimmune diseases-- and it is not specific to sarcoidosis. CRP--C Reactive Protein is another blood test that will tell them that you have inflammation somewhere-- but again is not specific to say sarcoidosis. Increased calcium levels can also be high due to various autoimmune processes. Again, not specific to sarcoidosis. That is the problem-- to date, there is no single or even multiple tests that say you have sarcoidosis-- only a biopsy of a specific spot-- that lesion in the lungs, is how they can say positive that what is going on is sarcoidosis. I know that your doctors are thinking that if the lesion doesn't change-- maybe you'll be one of the lucky ones that have your sarcoidosis resolve itself spontaneously. Actually, studies now show that if they don't do the "knee jerk" response of handing you a script for prednisone- you stand a greater chance of sarcoidosis NOT becoming a chronic or multi-systemic issue. The other part is that the docs are also thinking that the neuro symptoms you have are not linked to sarcoidosis-- because they don't realize that there is an interconnectiveness. There is a sister site-- www.stopsarcoidosis.com that has brochures on sarc, cardiac sarc, and neurosarc, as well as the value and pitfalls of prednisone use-- and the first one of each is free. Much of the info that they have in the Sarcoidosis and your body brochure is borrowed language from posts we did here. Another great site to get answers from is www.sarcoidosissharma.com. Dr. Sharma is a true "sarcoidologist" and his practice has been focused on this disease in so many ways. He is a true expert in this disease and was USC-LA's head MD on the Infliximab (Remicade) and pulmonary and ocular sarcoidosis clinical trial. (That is the trial I went thru to get on the Remicade.) He and Dr. Baughmann were and are the top 2 MD's in the US that specialize in sarc. They both understand the systemic elements of this disease. Print out the information from these sites and share them with your docs. I keep the brochures with me for all my docs. I am fortunate that my docs have been willing to read them-- and the response is always "I didn't know sarcoidosis did that..." Since they are written (reviewed at least) by M.D.'s-- they carry a bit more weight than what we can explain to them-- after all, we are the "patient." (Yep, it's sarcasm.) IF the next scan doesn't show change-- request a "gallium" scan-- in fact, maybe they can do that instead of the normal ct--- the "gallium" lights up areas that may be microscopic granulomas that a standard scan will show-- but the radiologists read our scans pretty fast-- and things can be missed. Gallium scans are older ways than PET's or the new scanners-- but they can really be an excellant marker. I know the "wait and see" is maddening-- because you still feel like crap-- and feel like no one is taking you seriously. I wish I had more answers-- it is part of the journey-- and it would be so helpful and reassuring if you could put a name to what is going on-- instead of typing in all your symptoms, and hoping that the answer appears. Do take care, Tracie NS Co-owner/moderator To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, May 20, 2010 7:30:58 PMSubject: Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin The New Busy is not the old busy. Search, chat and e-mail from your inbox. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2010 Report Share Posted May 22, 2010 Lots of good input there Rose. Thank you very much. I was thinking there are three things I need to do whether I want to or not, an eye exam having the problem saliva gland removed (might as well look at it when they get it out) and follow up ct and/or biopsy of the lung Any one of those might reveal something important and I guess I can worry about the rest when those are done. I finally realized today that tired or not those three aren't optional so they seem a good place to start. Thanks for the info about the consults. That could prove handiest of all. I seem to remember my family saying they'd help me through all this every step of the way. I'm tens of thousands of dollars in debt, unemployed, and very thankful for all the good folks in the sarc community for being my family. Cheers, Darrin To: neurosarcoidosis From: mamadogrose@...Date: Sat, 22 May 2010 08:49:51 -0400Subject: RE: Suggestions? Darrin, Pred is great for immediate symptom control; many of us have periodic "pulses" or "bursts" of pred or similar corticosteroids. For instance, uveitis, or inflammation of the eye, is a critical situation that needs immediate control. And 2-3 times a year I take a Pred dos-pak (decreasing doses over several days) for "reactive airway disease," fancy word for asthma. The real problem comes with long-term use, especially higher doses. Drs. Sharma & Baughman will often work with local docs in recommending treatment, when it's not feasible to travel to a major sarc center. I don't know if he would still do it, but the first time I saw Baughman (in Cincinnati), I was uninsured. I kept waiting for a bill & finally called the clinic. I was told I didn't owe anything. Another sarc patient told me he did the same thing for her, just waived his fee. Now they probably can't waive testing, but most hospitals & many physician practices will write off a significant part of the bill if you provide income info. Both of my daughters have benefited from this practice. It must be very frustrating trying to choose the optimal testing, the most bang for your buck basically. Then you are trying to factor in the safety issue. I guess I lean toward the lung biopsy, partly by personal bias (it was a piece of cake for me; not for everyone, obviously), and the risk seemed more acceptable to me. CT scans contain a significant amount of radiation, considerably more than a chest xray, and many organizations such as the AMA are recommending closer looks before doing so many CTs. Lots to think about, let alone decide. Just writing this stuff has made me tired & my brain fuzzy. Just continue to gather & sift information, ask questions of the group, keep records of your q & a's, consider requesting input from one of the sarc gurus (your local doc will have to contact them, but you can initiate the process), and roll the dice. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: neurosarcoidosis From: gphx@...Date: Sat, 22 May 2010 00:48:56 -0700Subject: RE: Suggestions?Thanks. Printing out info and sharing it with doctors is a great idea. SED rate, cell counts, ANA, and other tests for other immune diseases have come out all negative.Sarc seems like not just the only thing left but also the only option that explains all mysymptoms without introducing the idea of multiple conditions. From everything I've read I've come to hate the idea of Prednisone. If they try to put me on it I'llbe kicking and screaming. You're making me wonder why they don't go straight to the bronchoscopy instead of another scan.That and a couple of other biopsies may be the way to go. Wondering now whether if they biopsymy salivary gland can they take a little extra skin and check for sfm at the same time. Sounds likea good thing to ask. Cheers,Darrin To: Neurosarcoidosis From: tiodaat2001 (AT) yahoo (DOT) comDate: Thu, 20 May 2010 23:48:41 -0700Subject: Re: Suggestions? Darrin, That lesion in your lungs is probably sarcoidosis. Did they mention a "ground glass" like process of granulomas in the lungs. Have you ever had a bronchoscopy? That is an easy way to determine what this lesion is-- and it would give you some peace of mind to know what is going on. ACE levels are often high in many of the autoimmune diseases-- and it is not specific to sarcoidosis. CRP--C Reactive Protein is another blood test that will tell them that you have inflammation somewhere-- but again is not specific to say sarcoidosis. Increased calcium levels can also be high due to various autoimmune processes. Again, not specific to sarcoidosis. That is the problem-- to date, there is no single or even multiple tests that say you have sarcoidosis-- only a biopsy of a specific spot-- that lesion in the lungs, is how they can say positive that what is going on is sarcoidosis. I know that your doctors are thinking that if the lesion doesn't change-- maybe you'll be one of the lucky ones that have your sarcoidosis resolve itself spontaneously. Actually, studies now show that if they don't do the "knee jerk" response of handing you a script for prednisone- you stand a greater chance of sarcoidosis NOT becoming a chronic or multi-systemic issue. The other part is that the docs are also thinking that the neuro symptoms you have are not linked to sarcoidosis-- because they don't realize that there is an interconnectiveness. There is a sister site-- www.stopsarcoidosis.com that has brochures on sarc, cardiac sarc, and neurosarc, as well as the value and pitfalls of prednisone use-- and the first one of each is free. Much of the info that they have in the Sarcoidosis and your body brochure is borrowed language from posts we did here. Another great site to get answers from is www.sarcoidosissharma.com. Dr. Sharma is a true "sarcoidologist" and his practice has been focused on this disease in so many ways. He is a true expert in this disease and was USC-LA's head MD on the Infliximab (Remicade) and pulmonary and ocular sarcoidosis clinical trial. (That is the trial I went thru to get on the Remicade.) He and Dr. Baughmann were and are the top 2 MD's in the US that specialize in sarc. They both understand the systemic elements of this disease. Print out the information from these sites and share them with your docs. I keep the brochures with me for all my docs. I am fortunate that my docs have been willing to read them-- and the response is always "I didn't know sarcoidosis did that..." Since they are written (reviewed at least) by M.D.'s-- they carry a bit more weight than what we can explain to them-- after all, we are the "patient." (Yep, it's sarcasm.) IF the next scan doesn't show change-- request a "gallium" scan-- in fact, maybe they can do that instead of the normal ct--- the "gallium" lights up areas that may be microscopic granulomas that a standard scan will show-- but the radiologists read our scans pretty fast-- and things can be missed. Gallium scans are older ways than PET's or the new scanners-- but they can really be an excellant marker. I know the "wait and see" is maddening-- because you still feel like crap-- and feel like no one is taking you seriously. I wish I had more answers-- it is part of the journey-- and it would be so helpful and reassuring if you could put a name to what is going on-- instead of typing in all your symptoms, and hoping that the answer appears. Do take care, Tracie NS Co-owner/moderator To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, May 20, 2010 7:30:58 PMSubject: Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin The New Busy is not the old busy. Search, chat and e-mail from your inbox. Get started. Quote Link to comment Share on other sites More sharing options...
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