I had my first visit to my GP this week since being diagnosed by a Rheumy. I left feeling rather disappointed in him as well as concerned. I obviously know more about this disease than he does. When I asked him what he knew about it, he said that it is very rare and that it is just dry eyes and mouth, but nothing like the symptoms of Lupus and such. He questioned the fact that my blood work all came back negative, but I was still given the diagnosis of Sjogrens. I explained that my Rhumey said that in 50% of all sjogrens patients the blood work is negative but my Rheumy is certain about the diagnosis. When I came home and looked at my form for lab work I see that he has flagged it as "possible Sjogens". I am thinking that he doubts the specialists diagnosis. How do I work with him? I have always liked him (he has been my Dr for 20 years) I live in an area where it is next to impossible to get a Dr.(many people are without a primary care physician because of a Dr shortage here) How do I diplomatically approach him with information about this disease, so that I can work with him? He even questioned the fact that I was complaining of excess thirst saying that perhaps my mouth was just dry and I am mistaking that as thirst. (he is however checking my Glucose, as my Rheumy requested.)
i went through the same thing with my gp for years, until my bloodwork finally did show that i have it. one thing you might do is search the net for all the info you can find on sjogrens. i've read articles that specifically tell you how to approach and discuss your situation with your gp. it explains how to get your gp more interested in learning and helping with your situation. hope this helps.
i think that would kinda be out of line. what you can do is have your rheumy forward all of his test results and consultation to your gp. your gp will have to take this seriously because your rheumy is a specialist. or...you might try to discuss this situation with your rheumy and ask his opinion of the whole situation. i wouldn't say anything to your gp, because they may think that you're telling them they're uneducated...if you know what i mean. good luck.
Thanks for the reply guys. I know I have been thinking of talking to my Rheumy about this, but then again I wonder if perhaps I should just let it go. Does it really matter what my GP thinks? I'm pretty sure that My Rheumy had said he would send my GP a copy of my test results,but I will check on that when I see him in April. The entire process has been frustrating. My GP has insisted all along that I am just going through menopause and that this is all age related. I was on sick leave for 5 weeks last spring and during that time I was so sick I literally could not get out of bed. I was just to weak. I ended up in emerg on 4 different occasions and one Dr told me I needed to get to the bottom of this because he felt it could be very serious (I didn't have a diagnosis yet) My Doc however just says "menopause" leaving me to think "gee, how sick do I have to get." I realize that it would be better to have my GP "on the same page" but maybe I am going to have to accept the fact that it may not happen right away? I'm finding it rather insulting to have him being so dismissing of this, but maybe I just shouldn't take it personally. Boobootwo you said you had the same experience. How long did it take your blood work to finally show positive? Does it always end up turning positive at some point? or is it more likely to remain negative? Thanks, Knot!
i was in my mid 40's and having episodes of freezing spells that would lead to tachychardia and ended up in the hospital every 6 weeks. it was a cycle. i had this one really weird night that i felt totally drunk, disoriented, staggering all over. i was so scared and i was on the midnite shift and had started to get ready for work. this made me so scared that i called my sister and she came over and then i called an ambulance. they couldn't find anything wrong with me but couldn't understand why i was like that. i think they thought i was doing drugs or something. my doctor put me on anti-anxiety pills and i still kept having these episodes of tachycardia, so i had a very high heart rate when i went to see my doc. asked her if she thought i was calm and she said yes...very calm. i asked her to take my blood pressure and it was sky high. she said...okay...i know what it is. she put me on hormones. i was having estrogen overload. now...that's just the beginning. i had been suffering dry eyes for a few years around that time, but not serious enough that it could very well have been menopause, since you do tend to have a lot of dryness in different places. i read up on everything there is to know about menopause and i thought....i don't see half of the symptoms that i have, that have anything to do with it. i asked my gp to check my thyroid. normal for being in perimenopause. then i moved to a different city. started to suffer pains, ocular migraines, halo's in my eyes, intense pain in my joints. my eyes were getting dryer and dryer, i started getting these sick feelings in my head. started waking up hurting and not wanting to move or even open my eyes. soooo....i started doing research on my symptoms and read about autoimmune disorders and the testing involved in them. asked my gp if she would humour me and do an ana test on me. it showed slightly positive. problem is that a lot of people can have low positive levels and be normal. so year after year i keep asking for the test again and she finally referred me to an internist who did more presice testing and by this time my ana had gone up quite a bit and the new tests she did also became positive. it took pretty much 8+ years before they finally confirmed a diagnosis of sjogrens and fibromyalgia. you have to be persistent with doctors because they're not there to cure you...just to make you feel better. that's why specialists are the best ones to deal with because that's their field of practise. soooo....sorry this is so long, but i'm trying to show you that it is a slowly progressing condition that takes years to develop into something that doctors take more seriously and i guess we just suffer in the meantime until they finally realize we were telling the truth about how we are feeling and that there's cause behind it. just be patient and persistent and you will eventually get your answers. i know how hard it is...but you'll do it just like it did. i wish you all the best. just be careful when you get colds, mine turn into infections and i have to take 30 days of antibiotics to even start feeling better. sjoegrens is a disease of inflammation. so anything can become inflamed and you have to stay alert about things like that. hang in there.
Hi boobootwo, and thank you for sharing your story with me. It really does help to hear that other people there have had similar experiences. It sounds like you have been through so much. It just isn't an easy road, is it? In your story, I hear some similar threads with my own. Your description of your episodes of tachycardia sound oddly familiar. No one here told me that that was what was happening (except to say that my heart rate was dangerously high and needed to come down) but you have described what was happening to me so closely that I cant help but wonder... I was very scared of what was happening and questioned if was having a "nervous breakdown" or something. They just said they really didn't know and gave me Ativan. The episodes were severe enough that 0n 4 occasions I went to Emerg, but for about a 5 week period it happened almost every night to some degree.(no chills though) Eventually it stopped but I had heart palpitations regularly instead. I had to give up coffee and every time I tried to exert myself I ended up with hives all over my face, body, legs, arms, hands and feet. This rash also developed in a butterfly pattern across my face when I went outdoors. I was so exhausted all the time that in the am I would manage to shower but then have to go back to bed for a couple of hours, then get dressed and go back to bed and on and on... I had to hang onto walls or my husband when going downstairs as I was so weak that my legs felt like they were going to give out. During all of this my GP just kept insisting menopause. Like you I did a lot of research and to this day I insist that it just doesn't fit. I think that deep down I really thought that once I got over whatever happened last spring I would resume my "normal" life. I'm discovering that, that just isn't the way it is. Nothing has been the same since. It has literally been years since I have felt like myself. All the changing symptoms, fatigue, joint and muscle pain, Raynauds, a variety of rashes, dry eyes(diagnosed by my optometrist a year and a half ago. He actually urged me to talk to my Dr about Lupus at the time), dry mouth, nothing tastes right, unexplained bruising,hair loss broken blood vessels... but the blood work is all normal?!? I feel fortunate to have found the Rheumatologist that I have. He has been very understanding and helpful. He says that he is certain of his diagnosis despite the blood work. It's just my GP that I am frustrated with, but I will take your advice and just be patient with him. I think that is really all I can do. I did get in touch with the Sjogren's Foundation and I think they will be a good resource.
So thank you again for sharing. It was very helpful (therapeutic too) I wish you well also...Knot
i just want to give you a heads up on this...not to scare you, but to help a bit in your research. a butterfly rash on the face is common in lupus. now...women in menopause also suffer a facial rash, which since my brain never works...i can't recall the medical term for it. anyway....i have primary sjogrens, but there is also secondary sjogrens, which can mimic other autoimmune disorders and is in the likelihood to be more symptomatic than primary. once my ana test became positive...because it did fluctuate one year back into the more normal range and then went back up the next year....they can do what they call ssa and ssb testing which is more precise in determining which type you have. my primary will also mimic other diseases but i only show ssa on my testing...not ssb. i've seen research that both can show up in primary also. in my ana test results i have a speckled pattern with high titres which may be associated with lupus, sjogrens, mixed connective tissue disorders and scleroderma. having the ssa helped my doctor confirm that i have primary, but it can still mimic other disorders, so i have other symptoms that probably is what leaves doctors at a loss until they have absolute proof. i'm glad i can share this with you...it's always better to have someone there that has been there already. i remember when i started menoapause and my older sister had already started a few years before me, so whenever something happened, i could call her and felt relieved that i wasn't going nuts...lol. when autoimmune disorders develop....it generally is in the peri or menopausal years and mine started in perimenopause...around my early to mid forties, but my diagnosis wasn't confirmed until about 2 years ago because my testing was up and down at first. anyway....knot....if you need me...i'm here. i want to let you know too, that stress and not getting the proper amount of sleep will have a huge bearing on how you feel. honestly...i had an early shift yesterday...which i don't normally have, so i don't know when to go to bed. i only got about 4 hours of sleep and whammo....faint feeling, weakness...episodes of irregular heartrate, just from breathing deeply, inflammation of the sciatica, so bad that i was limping out of my doc's office today, high blood pressure. i felt like i was having a heart attack from the chest pains, etc. all that and more, just from not sleeping enough. so....rest...live every day happily, eat well, exercise as much as you can....and above all....try not to worry. please stay in touch and let me know how i can help in any way....okay?
Hello again boobootwo! Yes it is comforting to have someone else to talk to who has been through all of this. I am grateful for you support and advise. You know, I am not sure if I really talked to my Rheumy about the butterfly rash (funny what slips your mind) I have to put it on my "list" for my next visit (I've begun writing things down) He did tell me that when Sjogrens becomes systemic you get more symptoms that cross over from other diseases and that Sjogrens can be very difficult to diagnose. I was doing a little research on line and it seems as though some people may get the butterfly rash with Sjogrens but I am a little unclear about it. My Rheumy has been watching me closely and has made it clear that he is happy to answer any questions any time (he's even given me a 24hr call number) I see him again in April so I will follow up on this a bit more. Initially I did not want to go the medication route, but he felt that I should go on meds because I was having enough symptoms to warrant it. I felt that I should take his advice. I think I need to do more research on the tests as I don't think I have a really good understanding of them. I know that the tests he did run came back negative and that my organs were all looking to be in good condition. After 12 tubes of blood I felt like they should give me a cookie!
I know what you mean about the sleep thing...I went to a friends retirement party and I am still paying for the late night and food that I normally avoid. The rest thing has been difficult for me as I have always been someone who likes to multitask and go, go, go all the time. I still forget and then pay. It's frustrating to just try to live like "a normal person" and then find out that you just can't anymore. People who are close to me are pretty understanding but there are still those that think it's mind over matter and if I just try to "get over it" I will be just fine. Sometimes I still feel like I am talking about someone else...not me. Anyway, thanks again. I will stay in touch. Knot.
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i have a sister that focuses on the mind over matter thing and positive begets positive crap....but she doesn't feel like we do. she didn't even believe that i had an autoimmune disorder before and i still think she doesn't totally believe it because i've suffered panic disorder half of my life. my family is of no support except for my youngest sister and my mother and step-father passed away in the last few years and i was the one that took care of them. at least you have support and understanding and your family doesn't think of you as chronic. you're very blessed. not sure if i told you that i had a period after 2 1/2 years into menopause and finally had a biopsy and sonahistogram. not liking the fact that i keep spotting. doc mentioned i may have a polyp, but i also have a thickened uterus. kinda got me a bit concerned and i won't know the results until april 19. then of course, i start doing some research and if it was a polyp...he could have removed it when he did the biopsy, but not sure he did cause i'm still spotting. read some info about the bleeding and he said i'm bleeding fromt he cervix, not the uterus and the thickened lining could be an indication of carcinoma, or inflammation of the cervix. i tried to find information on sjogrens and the female anatomy, and all it talked about was because sjogrens is a disease of inflammation and it can destroy body parts, that the cervix tissue could be dying and not getting enough blood supply. soooo....here i go again with being concerned....geesh! and i have a colonoscopy coming up the end of april too! oh well....such is life. i have to take my own advice and be patient. by the way....i don't take any meds for anything. i was on stomach meds...but due to the fact that they are hard on the liver, i went off of them. have stomach acid when i don't eat and for some reason...when i drink water. can't understand that one though. i don't take pain meds either...yet. i have a very high tolerance for pain, but what i do have a hard time with is finding energy to do anything. i work part time and when i get home i have to nap. they say, not to overdue anything you do. light exercise, light housekeeping etc. i also wonder what people think when they see my totally blood shot eyes....and i drink maybe twice a year...lol. anyway...hang in there and hope to chat with you soon.
Last edited by boobootwo; 03-26-2012 at 07:10 PM.
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Sorry to hear that your family isn't supportive. That must be very difficult. Being sick and having people not believe you is rather insulting. I have been very fortunate that way. Even my work has been pretty supportive. Please take heart in the fact that you have "on line" friends that do understand and will support you. I've never been a big "computer person" but it is a wonderful thing to be able to communicate with people who have the same concerns. I hope you get the bottom of the spotting issue. Can sjogrens cause gynecological issues? I suppose it can affect any body system. I am beginning to realize that this is a pretty relentless disease. I have started having periods again after 8 months of none. But, as my daughter-in-law pointed out, maybe I was just too sick and that was the reason I had stopped. I have had some "makes you double over kind of pain" but I have an ultra sound in April so I hope that will provide some answers. A year ago they told me that I have some cysts on my ovaries, so I am thinking it is related to that. I can't believe that I am now someone who "goes to the Dr" often. I was one of those people who never got sick and only went once a year. I asked my mom if when you turn 50 do they flip a switch or something? (lol) How do you deal with the "red" eyes? My Optometrist has given me some FML drops which seem to help, but I hate to use them too much as they are a steroid drop. I hate when I have to talk to parents at school and I look like I have been on drunk or something. So I can relate to that situation! I use Systane Balance in the morning and then Bion tears the rest of the day (in the little single use vials.) Some days I use drops every hour! I also find that if I don't drink enough water I can't sleep. Would that be due to dehydration? Does it ever happen to you? My GP gave me a drug named "Quetiapine" to help me sleep. It's a very low dosage(25mg) and the drug is a anti psychotic. I haven't been able to talk to my Rhuemy about it yet. Do you use anything to help you sleep? Some nights my brain just won't shut off. I always fall asleep easily, but when I wake up it can be very difficult to go back to sleep. I get anxious and then sometimes the heart palpitations start. It can be very frustrating not to mention that it makes work very difficult. I love my job but it is very demanding (I work with special needs children. Am I allowed to tell you that?) This year my position is part time but next year the other braillist will be gone so that means that they need me full time. I am nervous about the sleep issues because my being successful will depend on it and I have a student who will be depending on me. Any tips? I am going to see another Dr in July (very long waiting list) who specializes in Chinese medicine as well as being a medical Dr. I want to see if acupuncture will help. He has a wonderful reputation and everyone that goes to him swears by him. Ever tried acupuncture? My Rheumy says it makes some people feel better, so it's worth a try. Anyway...sorry this has gotten so long. I just keep thinking of more questions! Knot
I tried to post you this morning, it's not there. Don't know what happened. Oh well...sorry to hear that you don't have family support. It's insulting when people think "it's in your head" I hope that you take comfort in the fact that you do have the support of other "on line" friends. It is a very good thing to be able to share stories and ask questions. I'm liking this board. I live in a rather remote area and I am not very likely to meet many other people with this condition. I feel like I have made a friend in you. It is so therapeutic to talk with someone who knows exactly how this feels. By the way, I can relate to the "red eyes". Mine are really horrible some days. I use Systane Balance first thing in the am. and then Bion Tears (preservative free) the rest of the day. Some days I need to use drops every hour. I also use an ointment at night, and when the redness gets too bad I use a FML drop. It is a steroid drop so I try to limit it as much as possible. Some days it's embarrassing when they are really red and I am talking to a parent at school. Anyway...I gotta go to bed. I am just exhausted tonight. It's been a very tired week. Take care!
i used to be a member of one of these health boards. can't remember which one now, but it was when i started suffering in perimenopause and my onward battle to find out what the heck was wrong with me. i do like the support here and you have definitely made a friend. sounds like you've been through the same thing that i have with our eyes. i started on all of the over the counter ones first and my opthamologist inserted plugs in my tears ducts...which...since i wear makeup and have to take it off...they feel out. they were giving me too much mucus in my eyes and that made it even more difficult too see. so then he put me on restasis. didn't have near as much mucus, but stayed on that for a year and still wasn't really making a difference, so i switched back to over the counters and some of the preservative free ones. preservatives have never bothered me anyway. trying this new one now, called visine, enduring moisture. don't really think anything is going to help at this point. i may go for the plugs again, but he said he would have to install larger ones cause my ducts are larger. hate the feeling of always feeling tired and gritty in my eyes. not only that...i have a cataract in my left eye and of course...even though it affects my vision...they wait until it covers the eye before they remove them. my other eye is lazy, so i only aids the left eye. it's no good on it's own. i'm even having a hard time tolerating light now and that's sad cause i'm a sun freak! lol. what country are you in? i'm in london, ontario canada. i feel for people in the states that have to pay for all their medical. at least our medical covers all my specialists, hospital, if i need it....but not the expensive prescriptions, so i usually opt for the cheaper generic brands that seem to have more side effects. that's why i'm looking at information on more holistic treatments. sorry that your note didn't come up earlier, cause i usually pop in and out of here all day. but...i got it now. hope you're sleeping with angels and we'll catch up soon. can i add you as a friend on here?
Good Morning! Yes you can add me as a friend. I live in Canada as well! I live in a smaller town in northern Alberta. I'm not sure how much personal info I am able to post here so I will err on the side of caution. My first name is a very unique one so I won't post it (I've only heard of one other person with my name) As friends can we get in touch? Eyes. Yes I have had a lot of trouble. I do have the plugs,they don't bother me but they don't help as much as I had hoped. I haven't tried Restasis. For some reason my optometrist is hesitant about it. He said it is very expensive and not always effective. I have very good coverage through work. Our secretary at school uses it and it worked at first but has stopped working for her (she has had laser eye surgery) I may ask about trying Lacresert (not sure of the spelling) however it is the one thing my coverage will not pay for. But if it works it may be worth it. Going the holistic route has helped me with certain issues a lot. Through my Naturopath I learned which foods to avoid and it has helped me with digestive issues. I have also discovered (with her help) which foods make my symptoms worse. I have found that if I follow an "eat clean" diet I feel much better. I have discovered that refined sugar is just horrible for me. So for sweeteners I use things like Agave syrup, raw honey, maple syrup, and sucanat. I also have a lot of trouble with wheat so I really limit bread and baked goods. (unless they are gluten free and baked with one of my preferred sweeteners) I try to stick with whole foods and avoid anything that comes in a box. It means that I have to do a lot more prep work and takes planning but it helps. I make my own granola etc and once you get used to eating this way its pretty easy. Whole food actually tastes better. I am going to try Acupuncture as well. I have an appointment with a Dr in July (long waiting list) who specializes in combining western medicine and Chinese medicine. He is a from China and licensed in both medicines. His reputation is great so I can't wait to see what he has to say. Anyway, I have to get something done. I am sure we will "chat" again soon!