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Old 03-05-2013, 09:22 PM   #1
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my first post... warning - it's way too long

I've been reading a lot of posts to learn more about Sjogren 'since I was dx more than a year ago. Its seems a common thread with people with AI or SS is the problems getting an accurate dx and the doctors that blow you off. Ive had symptoms for about 15 years and have had my primary care dr for about 12 years. I'm going to find a new dr since the last few years she made me feel apologetic if I don't feel well or ask questions. A few years ago when I asked about pain in my legs she said it was just part of having fibro....I asked if I had fibro, and she looked at me like I was crazy because I apparenty had i fin it for many years...apparently she failed to mention it to me, which I would have found helpful. Year after year it has gotten worse. I finally asked her to do more testing because my fingers were locking up and very painful and I thought more was going on. She said she was sure tests had been run at some point and started reading my chart. She asked me if anyone had ever told me I had a positive ANA test...10 years ago? She said it should have been rechecked at that time to rule out a false positive. So 10 yrs later got new blood work and another positve ANA. So she refers me to a Rhuemy dr and I had to wait 11 months to get an appointment and was told the wait to see any Rhuemy was at least that long. When i finally saw the dr, was sent for more labs. She prescribed plaquinil and told me to follow up in a month. When I did, she said ANA was negatve but based on symptoms she was dx sjogrens anyway. She asked if the plaquinil helped any and I told her I couldn't really tell. Her remark was it doesn't help everyone, I should have seen a difference if it was going to help. She told me to stop taking it. She said my arthritis was not rheumatoid, I had osteo arthritis, fibro, and Sjogrens. She gave me a handout and said I didn't need to come back since she did all she could for me. I wasn't feeling the love and felt like the door slammed in my face. Last week I thought I had a UTI,but labs show blood in urine but no infection. Dr said probaby kidney stone so no antibiotics, go to er or urgent care if it got worse or if I didn't pass the stone...3 days later at urgent care labs showed nitrates and blood so was put on antibiotics and dx kidney & UTI. Today they called and told me the culture they took didnt grow bacteria. Anyway I read where Sjogrens can cause kidney issues so I don't know whether to keep taking the meds and just wait and see if the nitrates and blood go away,or go ahead and get an expensive CT scan that I can't really afford. Have any of you had anything similar?

 
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Old 03-17-2013, 12:32 PM   #2
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Wink Re: my first post...warning its way to long

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Originally Posted by Withered View Post
I've been reading a lot of posts to learn more about Sjogren 'since I was dx more than a year ago. Its seems a common thread with people with AI or SS is the problems getting an accurate dx and the doctors that blow you off. Ive had symptoms for about 15 years and have had my primary care dr for about 12 years. I'm going to find a new dr since the last few years she made me feel apologetic if I don't feel well or ask questions. A few years ago when I asked about pain in my legs she said it was just part of having fibro....I asked if I had fibro, and she looked at me like I was crazy because I apparenty had i fin it for many years...apparently she failed to mention it to me, which I would have found helpful. Year after year it has gotten worse. I finally asked her to do more testing because my fingers were locking up and very painful and I thought more was going on. She said she was sure tests had been run at some point and started reading my chart. She asked me if anyone had ever told me I had a positive ANA test...10 years ago? She said it should have been rechecked at that time to rule out a false positive. So 10 yrs later got new blood work and another positve ANA. So she refers me to a Rhuemy dr and I had to wait 11 months to get an appointment and was told the wait to see any Rhuemy was at least that long. When i finally saw the dr, was sent for more labs. She prescribed plaquinil and told me to follow up in a month. When I did, she said ANA was negatve but based on symptoms she was dx sjogrens anyway. She asked if the plaquinil helped any and I told her I couldn't really tell. Her remark was it doesn't help everyone, I should have seen a difference if it was going to help. She told me to stop taking it. She said my arthritis was not rheumatoid, I had osteo arthritis, fibro, and Sjogrens. She gave me a handout and said I didn't need to come back since she did all she could for me. I wasn't feeling the love and felt like the door slammed in my face. Last week I thought I had a UTI,but labs show blood in urine but no infection. Dr said probaby kidney stone so no antibiotics, go to er or urgent care if it got worse or if I didn't pass the stone...3 days later at urgent care labs showed nitrates and blood so was put on antibiotics and dx kidney & UTI. Today they called and told me the culture they took didnt grow bacteria. Anyway I read where Sjogrens can cause kidney issues so I don't know whether to keep taking the meds and just wait and see if the nitrates and blood go away,or go ahead and get an expensive CT scan that I can't really afford. Have any of you had anything similar?
sorry to hear about your difficulties withered. i have had sjogren's for many years too, but only diagnosed 4-5 years ago. i also have a bit of blood in my urine, but doc says nothing to worry about and i don't have any infection at all. sjogrens can affect your whole body in different ways. i have waves of not feeling well for days and then the next couple days i don't feel too bad. it's funny that when my ana levels are low....i feel worse than when they're high. your ana can fluctuate consistantly, which mine does and is down again to 1:40, but i seem to be having more problems...go figure...lol. the trick with sjogrens is...when you have a symptom...give it a couple of days to see if it goes away...if it doesn't then see you gp. we do have to watch infections as they can harm us more than someone with no disorder. i work sitting all day in front of a puter and half the day yesterday, my back was killing me. kept having to launch my abdomen forward and rub my back to try to ease up the pain. we have brand new ergonomic chairs, which are very comfortable, so i know that it was probably my sjogrens. i'm fine today. if your gp is not giving you the care you need then i would suggest that you find another. autoimmune disorders tend to make us a bit of a hypochondriac and gp's can't be bothered with that. not only that...they know that there's not much they can do until we start having more serious problems. my blood work comes back fantastic...as if i had the blood of a 30 year old, but yet i suffer. my doc says i'm the healthiest patient she has...other than the sjogrens and fibro. if you search the sjogrens syndrome foundation, you will find a lot of helpful resources there. seems they do much more research on autoimmune disorders there. anyway....i hope everything works out well for you and just try to keep a positive attitude and do what you can do. don't over due anything. you'll be fine. hang in there and all the best to you!

 
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Old 03-22-2013, 05:34 PM   #3
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Re: my first post...warning its way to long

boobootwo,

thanks for your helpful response. I think the key thing is that we do end up sounding like hypocondriacs due to all the different symptoms. Its been a weird week for sure, Monday I had a followup with my gp with new urine test. I no more had left the office and I was peeing very bloody urine. Very bright and lots of it. I did that for about 24 hours. The sample I gave in the office had microscopic blood and couldn't be seen. Then wham! I was referred to Urologist...couldn't get in until yesterday. On Tuesday my neurologists office called and asked if I wanted to come in since they had a cancellation. I was due for my one year followup, but due to his schedule, it had been pushed back until October. I had scheduled my colonoscopy for Wednesday and drs said go ahead with it, even though I had the other problem. Nothing new with Neuro but he was worried that the amount of blood and symptoms I had sounded like bladder cancer/tumor or kidney disease.....what an optimist LOL. Urologist yesterday went into bladder with camera (so much fun) and said no tumor or bladder cancer, sent me to hospital for cat scan. It came back showing I had a 8mm kidney stone stuck in my plumbing! He wants me to have the treatment where they break up the stone with sound waves so it can pass. I am scheduled on Monday, so this weekend I'm on pain meds and just hanging out. I've never had kidney stones before, but was told to start taking calcium about 3 weeks ago since my bone scan showed bone loss and low magnesium. I started taking Viactiv, and now have found on the web that it can cause kidney stones.....I give up...you try to make sure you are taking care of yourself, then this! LOL
I'm feeling better, had a very frank conversation with my GP, and have been referred to a new endocronologist and rhuematologist in the next 2 months. Hopefully it will all sort itself out. I can't believe I have so many specialists that I have been told to see. It is good to get on this forum and find out you are not alone, and the folks here now exactly what you are going through. Hope all stays well with you and that your back remains symptom free.

 
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Old 03-25-2013, 12:55 PM   #4
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Re: my first post...warning its way to long

Quote:
Originally Posted by Withered View Post
boobootwo,

thanks for your helpful response. I think the key thing is that we do end up sounding like hypocondriacs due to all the different symptoms. Its been a weird week for sure, Monday I had a followup with my gp with new urine test. I no more had left the office and I was peeing very bloody urine. Very bright and lots of it. I did that for about 24 hours. The sample I gave in the office had microscopic blood and couldn't be seen. Then wham! I was referred to Urologist...couldn't get in until yesterday. On Tuesday my neurologists office called and asked if I wanted to come in since they had a cancellation. I was due for my one year followup, but due to his schedule, it had been pushed back until October. I had scheduled my colonoscopy for Wednesday and drs said go ahead with it, even though I had the other problem. Nothing new with Neuro but he was worried that the amount of blood and symptoms I had sounded like bladder cancer/tumor or kidney disease.....what an optimist LOL. Urologist yesterday went into bladder with camera (so much fun) and said no tumor or bladder cancer, sent me to hospital for cat scan. It came back showing I had a 8mm kidney stone stuck in my plumbing! He wants me to have the treatment where they break up the stone with sound waves so it can pass. I am scheduled on Monday, so this weekend I'm on pain meds and just hanging out. I've never had kidney stones before, but was told to start taking calcium about 3 weeks ago since my bone scan showed bone loss and low magnesium. I started taking Viactiv, and now have found on the web that it can cause kidney stones.....I give up...you try to make sure you are taking care of yourself, then this! LOL
I'm feeling better, had a very frank conversation with my GP, and have been referred to a new endocronologist and rhuematologist in the next 2 months. Hopefully it will all sort itself out. I can't believe I have so many specialists that I have been told to see. It is good to get on this forum and find out you are not alone, and the folks here now exactly what you are going through. Hope all stays well with you and that your back remains symptom free.
sorry to hear about the stones. if it makes you feel any better...you should see what it's like for a man to have them! when i was in the er one day for bout of tachardia, the guy across from me was just whaling!! because of the way a man is built...they don't generally pass them and require surgery. poor guy. glad that your taking care of yourself. i've heard stones are no fun for anyone. i haven't had that so far...(touch wood)...lol. i believe that my sjogrens likes to make a trip around my body and is affecting my head now. have been having dizzy spells....couple of bad ones too. didn't fall, but sure did have a great trip...lol. brought me back to the days of roller coasters..lol. still having feelings of wooziness, but when i flair in the sinuses i have my corticosteroid spray. usually makes me feel a bit better. the old humidifier isn't doing it for me like it used to, but i don't want to turn it up higher as i don't want too much humidity in my apt. also find i'm coughing with that dry cough when i don't have any phlegm to bring up. don't ever feel alone. we all have our difficulties but we all suffer in different ways. sjogrens happens to affect my heart also, when i have a very stressful situation and i was reading an article in the sjogrens foundation about how my brain can send the wrong signals to my heart and cause erratic behaviour. lasted about 4-6 weeks and is now settling down. i realize now that it was starting a new job after being off for over 6 months. now my cat is very sick and i don't think she is going to make it. keep telling myself that this is life. i can only control certain things and what i can't control, i just have to reason with it the best i can. she is 14 and her wbc is off the board. some kind of infection and one vet thinks it was just her teeth, but the other said it's a much more serious infection than what teeth could cause. she has no immune system right now and quit eating, drinks a sip here and there and hasn't been in her box for days. she is 14 and i'm surprised that she is still getting around and wants lots of attention. i won't let her suffer, so i'm only giving it a few more days.
when we're young we find life surprising....as we age, we find it more shocking. wish there was a happy medium...lol.
glad to hear that you are getting specialists. i moved back to my hometown where there are 2 neurologists. i had very good specialists where i was living, but...just because they're there...doesn't mean they can make us feel better. that's up to us. the one i have now, just says it's not at the point that i can do anything for you, so we treat the symptoms when they arise. we may have a lot of physical symptoms, but when you actually take a look around...friends...acquaintances..people we know....everyone has problems of some sort. the world is just not as friendly a place, as when i was young. sooo....lets live it up and look for happiness and laughter in everything we do. you will do fine and i hope that you will keep in touch whenever you need someone to understand, because i will. just keep smellin' the roses!

 
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Old 04-02-2013, 11:35 PM   #5
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Smile Re: my first post... warning - it's way too long

I was just wondering how you were doing and hoping your precious kitty is doing better. I love animals and have lost several in my lifetime. It's never easy to lose a pet, but like you, I wouldn't let them suffer. I am thankful for all the joy they brought me and fun we had. I have 2 of the most spoiled little dogs that keep me company and share my life , and I really believe they help reduce stress (unless they potty on the floor, then I'm stressed because they know better!)

Thanks for your kind words of encouragement. It's hard for people to understand what it's like unless they have it too. I had lithotripsy to break up the kidney stone so it could pass. I have passed some pieces but still feeling weak and my back is sore. The CT scan showed the multiple lymph nodes involvement and said it could just be reactive, but to get new CT scan before 3 months because it could be lymphoma. I understand with Sjogrens we have an increased risk, but the good news is that when my doc referred me to the oncologist, he said to wait a few months for a repeat study to see if it has changed. Apparently he didn't feel there was any rush or huge concern, which made me feel a little better. I'm just taking it one day at a time and trying to feel better. Today I felt better than I have in a long time so maybe Im finally on the road to recovery.

Take care and thanks again.

 
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Old 04-27-2013, 01:41 PM   #6
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Re: my first post... warning - it's way too long

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Originally Posted by Withered View Post
I was just wondering how you were doing and hoping your precious kitty is doing better. I love animals and have lost several in my lifetime. It's never easy to lose a pet, but like you, I wouldn't let them suffer. I am thankful for all the joy they brought me and fun we had. I have 2 of the most spoiled little dogs that keep me company and share my life , and I really believe they help reduce stress (unless they potty on the floor, then I'm stressed because they know better!)

Thanks for your kind words of encouragement. It's hard for people to understand what it's like unless they have it too. I had lithotripsy to break up the kidney stone so it could pass. I have passed some pieces but still feeling weak and my back is sore. The CT scan showed the multiple lymph nodes involvement and said it could just be reactive, but to get new CT scan before 3 months because it could be lymphoma. I understand with Sjogrens we have an increased risk, but the good news is that when my doc referred me to the oncologist, he said to wait a few months for a repeat study to see if it has changed. Apparently he didn't feel there was any rush or huge concern, which made me feel a little better. I'm just taking it one day at a time and trying to feel better. Today I felt better than I have in a long time so maybe Im finally on the road to recovery.

Take care and thanks again.
so far my cat is still doing okay withered. she's still not eating on her own, but i keep her fed with a recovery diet. she was even playful yesterday. just worried cause she hasn't gone #2 in over a week, so i've been giving her laxatives. hope they work soon. sorry that i haven't been on in a while, but i started a new job and it's keeping me very busy. glad that things are working out for you, for the better. wish i could say the same. been having a lot of migraines....well...i guess they would call them pounding headaches since a migraine tends to make you throw up and i'm not getting that. have this really weird thing happening too. i smell exhaust fumes all the time. started about a month ago. ever hear of anything like that with sjogrens? i looked up some articles and they refer to it as either parosmia or phantosmia. seems, by the articles that it may be linked to an infection, although i don't feel like i have one, but can you imagine smelling that all the time....geesh!! and to add to it, the ringing in my ears has gotten louder too. starting to drive me nuts! lol. going to the clinic on monday to see what's going on. go figure...just when the weather starts to finally get nice....i start to feel worse. my glfd laughed at me when i said...c'mon humidity!! lol. i love it...everyone else hates it. oh well...just wanted to check back in with you and say hi, since i haven't had the time to get on here. keep up all of the good feelings!!

 
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Old 04-28-2013, 09:11 AM   #7
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Re: my first post... warning - it's way too long

Kidney obstruction not r/t SS

Last edited by chillip1123; 04-28-2013 at 09:15 AM.

 
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Old 04-28-2013, 09:12 AM   #8
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Re: my first post... warning - it's way too long

I had kidney obstruction, had several UTIs, but not diagnosed for 8 months, had CT and showed kidney enlargement. Dr said it was congenital not related to SS.
Follow up with Dr if you have back pain with UTI symptoms!!

 
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