Guest guest Posted August 7, 2010 Report Share Posted August 7, 2010 Hi, Sherrie. You have definitely got a lot on your plate. First, regarding antidepressants: there are many options & we all can respond differently--positive or negative. Some of them help with various types of pain; some interact with other drugs more than others do. Do you mind a few questions? How long have you been having these symptoms? What kind of workup (tests, procedures, physical exam, history, etc.) have you had? What types of doctors have you seen? Unfortunately, sarcoidosis & especially neurosarc, can go undiagnosed unless you have a positive biopsy. I'm not trying to undermine your faith in your docs, but the majority of physicians are still not up on the latest sarc research. If you've seen someone with lots of experience diagnosing & treating sarc, they are less likely to miss it, but it's still possible. I know of many folks whose doctor(s) have given them a presumptive diagnosis of sarc despite negative testing. At any rate, you apparently have some type of chronic disorder, which can cause the most resilient person to become depressed. I'm a pretty cheery gal & over the 10+ years I've had NS I've been severely depressed several times. I took Prozac for several years, then we switched to Cymbalta for the neuropathic pain relief. After about a year, my already-dry eyes got much worse from the Cymbalta, so back to Prozac. After awhile it didn't seem to be helping; my psychiatrist suggested that I had "hit the wall" or developed too much tolerance to the Prozac & we decided to try Effexor. It's working pretty well, but I may have to toggle back & forth with the Prozac in time. You have probably suffered significant losses with this illness, whatever it is. If you've always been healthy, you may feel a loss of trust in your own body. You may have lost a job or career, financial security, retirement plans, relationships, activities & hobbies. Everyone has a different list, in different sequence, but chronic illness can cause us to go through the grief cycle repeatedly. You feel shocked, angry, scared, etc., finally get to place of acceptance, and wham, another loss. As one of our owners says, you have to keep learning a new normal. It would probably be pretty weird to not get depressed. Are you comfortable with your medical team? That they are doing everything possible to find the cause of your symptoms? Do you have good support, either family or friends? With the fatigue, cognitive problems & depression, you may not be able to advocate for yourself. Someone needs to make sure you don't fall through the cracks. I know this is possibly going to overwhelm you even more, but I think that deciding on an antidepressant is not a simple decision. We will try to give you all the info & support you need. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Sat, 7 Aug 2010 21:50:26 +0000> Subject: Antidepressants> > Hi there, > Recently I was accessed for neurosarcoidosis but the results came up clear. I do not have sarcoidosis. The only signs I have are hypopituitarism, fever, swollen glands, throat and ear congestion, conjunctivitis, slight facial rash, slightly elevated ALT, AST and bicarbonate, sometimes elevated urea and more recently elevated MCH. Calcium has been slightly elevated but this was on only one occasion. I also have intense fatigue and cognitive dysfunction, Following a lack of diagnosis, I finally decided that this condition was consuming me so much that I would try just to accept that there may never be a diagnosis and to get on with things as best I can. I have always thought myself to be a very resilient person, but this lasted two weeks and has set me into a spin of chronic depression. I feel as though all hope is gone and just don't know what to do anymore. My psychologist wants to put me on antidepressants, and while at first against it, I don't think I'm going to be able to get myself out of this one. I'm wondering if people could share the types of antidepressants they take that give them goods results with little side-effects.> Cheers,> Sherrie> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members 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 August 7, 2010 Report Share Posted August 7, 2010 Hi Rose, The neurological problems have waxed and waned over the past three years, around the same time I was diagnosed with hypopituitarism. The fatigue and cognitive problems temporarly resolved with cortisol replacement. The chronic pain resolved with both thyroid and cortisol replacements. I also get weird vision - despite being 20/20. Also, when I lay on my face, such as in a massage, I can barely see for quite some time afterwards. They recently found that I have inflammation of the conjunctiva and I've been referred to an eye specialist...the top corners of my eyes, especially the right, are white and limpy. I also have red lumps on my cheeks and, when cold, my skin shows lots of white spots. The work up for sarcoidosis was an xray of the chest, serum ACE and calcium and a lumbar puncture. I was told that these were all clear. I have an endocrinologist and have seen a rheumo, gastro and neuro. Actually, I have no faith in docs... it's just that I don't know where the good one's are and am wearing very thin! There doesn't seem to be many sarc specialists in Aus... particularly my state. My husband is great and has said that there is no pressure to work more than 3 days a week... but it's still hard because everything is relative and he cannot quite grasp that concept! Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2010 Report Share Posted August 7, 2010 Hi Rose, The neurological problems have waxed and waned over the past three years, around the same time I was diagnosed with hypopituitarism. The fatigue and cognitive problems temporarly resolved with cortisol replacement. The chronic pain resolved with both thyroid and cortisol replacements. I also get weird vision - despite being 20/20. Also, when I lay on my face, such as in a massage, I can barely see for quite some time afterwards. They recently found that I have inflammation of the conjunctiva and I've been referred to an eye specialist...the top corners of my eyes, especially the right, are white and limpy. I also have red lumps on my cheeks and, when cold, my skin shows lots of white spots. The work up for sarcoidosis was an xray of the chest, serum ACE and calcium and a lumbar puncture. I was told that these were all clear. I have an endocrinologist and have seen a rheumo, gastro and neuro. Actually, I have no faith in docs... it's just that I don't know where the good one's are and am wearing very thin! There doesn't seem to be many sarc specialists in Aus... particularly my state. My husband is great and has said that there is no pressure to work more than 3 days a week... but it's still hard because everything is relative and he cannot quite grasp that concept! Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2010 Report Share Posted August 7, 2010 Sounds to me like you have a lot of Sarcoid symptoms, what ruled it out? Because the best way to diagnose it is with a swollen lymph gland, or a biopsy some where you are having trouble, I'm not sure I would rule it out yet? Yes I was on Anti-depressants for a few years, After my dx, I got sick and was for about 6 months went into remission, for about a year, then out, and had to leave my best job ever, Labor and delivery nurse, I was working nights and it was killing me, so I spent the summer home with my kiddos, we had a great time, then they went to school, and I began missing my job more then ever and got depressed, started Anti depressants and counseling, did this for years, then as life was getting better and I went into remission again, I was able to go off the Anit-depressants, and went to work in an office I had previously worked in, they knew my medical history, and were support of it, I enjoyed my work there, I did prenatal teaching, labor and delivery classes, I did a few other things, can't remember, and worked for a doc now and then. Then a day job opened a the hosp. for L & D, and I jumped at it, worked about 2 years, when the sarc monster hit again and hard, this time Neuro and skin, and have not had a remission in 10 years, I'm not on Anti depressants, because I know how to deal with it, some days I feel down and out, and other days are fine, I took to writing in a Journal, I have them all over the house and when I feel like putting my thoughts down I grab one and do it. OK sorry to rattle on, just trying to get up with Rose:) so that's my Anti depressant story. I thing they are a good thing when you need them, they ,may help to do deal with all that's going on, especially without a dx. but I wouldn't be so fast to give up on Sarcoid. Anyway, we are still here for you, even if you think you don't have Sarcoid??? Hang in there,Blessings, Marla Hi there, Recently I was accessed for neurosarcoidosis but the results came up clear. I do not have sarcoidosis. The only signs I have are hypopituitarism, fever, swollen glands, throat and ear congestion, conjunctivitis, slight facial rash, slightly elevated ALT, AST and bicarbonate, sometimes elevated urea and more recently elevated MCH. Calcium has been slightly elevated but this was on only one occasion. I also have intense fatigue and cognitive dysfunction, Following a lack of diagnosis, I finally decided that this condition was consuming me so much that I would try just to accept that there may never be a diagnosis and to get on with things as best I can. I have always thought myself to be a very resilient person, but this lasted two weeks and has set me into a spin of chronic depression. I feel as though all hope is gone and just don't know what to do anymore. My psychologist wants to put me on antidepressants, and while at first against it, I don't think I'm going to be able to get myself out of this one. I'm wondering if people could share the types of antidepressants they take that give them goods results with little side-effects. Cheers, Sherrie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2010 Report Share Posted August 8, 2010 Hi Rose, The neurological problems have waxed and waned over the past three years, around the same time I was diagnosed with hypopituitarism. The fatigue and cognitive problems temporarly resolved with cortisol replacement. The chronic pain resolved with both thyroid and cortisol replacements. I also get weird vision - despite being 20/20. Also, when I lay on my face, such as in a massage, I can barely see for quite some time afterwards. They recently found that I have inflammation of the conjunctiva and I've been referred to an eye specialist...the top corners of my eyes, especially the right, are white and limpy. I also have red lumps on my cheeks and, when cold, my skipots. n shows lots of white s I too have white I call extra tissue looking in the corner of my eyes too, and I have red lumps with a rash on my face, and in either cold or sun my arms show up with lots of white spots, worse for me with the sun, and the spots tend to stay for awhile. Saracoidosis is a dx made by ruling out other dx. so just because tests come back neg, that really doesn't mean a thing, Hang in there girl:) Marla The work up for sarcoidosis was an xray of the chest, serum ACE and calcium and a lumbar puncture. I was told that these were all clear. I have an endocrinologist and have seen a rheumo, gastro and neuro. Actually, I have no faith in docs... it's just that I don't know where the good one's are and am wearing very thin! There doesn't seem to be many sarc specialists in Aus... particularly my state. My husband is great and has said that there is no pressure to work more than 3 days a week... but it's still hard because everything is relative and he cannot quite grasp that concept! Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 Thanks so much for the encouragement Marla. I'm convinced that it's sarcoid... but what would I know, I'm only the patient! (-; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2010 Report Share Posted August 16, 2010 You need to find a doctor who is willing to learn about Sarcoid with you, That's what my doc did, and it's worked out really well. Good luck, Marla Thanks so much for the encouragement Marla. I'm convinced that it's sarcoid... but what would I know, I'm only the patient! (-; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2010 Report Share Posted August 17, 2010 Thanks Marla... I'll keep you updated! > > > > > > > > > Thanks so much for the encouragement Marla. I'm convinced that it's > > sarcoid... but what would I know, I'm only the patient! (-; > > > > > > > Quote Link to comment Share on other sites More sharing options...
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