Need someone to talk to.
Posted , 11 users are following.
I have not been diagnosed with sjogrens, but I have many symptoms associated with Sjogrens. I have dry eyes, mouth, nose and vaginal dryness. My ears do not produce wax anymore, my hair is dry and has been falling out, lost half my hair in the past year. I have tinnitus, burning skin, mild joint pain, weakness in muscles and muscle loss. I have chronic fatigue, body can’t regulate temperature, cold all the time and I feel like I have the flu all the time. I have been going to doctors for the past two years, but they have only diagnosed me with sicca. I have low thyroid, currently taking Armour thyroid medication for over 10 years. My GP sent me to a Rheumatologist a year ago, did many test, but did not find anything wrong. My Rheumatologist sent me to ENT to do a lip biopsy, but never had it done due to complications of procedure. I just went back to see GP, she ran blood test again for Sjogrens, but everything came back normal. I have also gone to Cardiologist for chest pressure and shortness of breath, he wants to send me to a Pulmonologist to do pulmonary test. I have never had anxiety until all this started happening. I can’t sleep and I am now so depressed I don’t know what to do anymore. I lost my Job 15 months ago, but now too tired to work or Volunteer. I really need someone to talk to . My cousin who is my best friend does not understand, my husband knows there is something wrong, but just tells me to keep going back to the doctor. My daughter gets frustrated with me because I’m too tired to do anything. I’m scared and feel all alone.
0 likes, 26 replies
mandy95 dianne12100
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dianne12100 mandy95
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margaret22116 dianne12100
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It is so frustrating that these tests are not always reliable. Specialists should know this. Perhaps you could see a different, better doctor. If you look at the website of the Vasculitis Foundation of the United States I think there is an interactive map where you can look for good docs in your area. Perhaps you'd consider a change of doctors. It is so awful the amount of people like you waiting for a diagnosis, suffering and not being treated. I really feel for you, I had a long wait to be diagnosed too....I don't have Sjogren's but very similar Behcet's. Often my blood tests show nothing these tests can change over time.
Margot49 dianne12100
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I am so sorry you are going through this. I deal with many of the same issues. Why can't they do the lip biopsy? I have had blood work done, biopsies on my lip (still numb) and parotid gland biopsy, all negative. Lost count of how many doctors I have seen including going to Stanford. Are you on the West Coast? I also have GI issues and now neuropathy in my feet, unknown cause! Horrible dry mouth and throat for a long time. Word of advice, take care of your teeth! I am now going through $15,000 of dental work because all my top teeth are loose. You cannot really wear a denture with dry mouth. My thyroid is low also but just within the "normal" chart so not on meds. I now take daily D-3 and B-12. Hard for family and friends to understand the misery we go through as you often don't look sick. Yes, you do feel alone. I would suggest you go for some counseling if for no other reason then to be able to talk to someone and get some support. Wish I could offer more help. I just try to manage as best as I can and try to stay upright.
margaret22116 Margot49
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dianne12100 Margot49
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lily65668 dianne12100
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Hi Dianne,
I came to the same conclusion as you when I saw a rheumatologist about 12 years ago - that a lip biopsy wasn't worth the risk of complications, given that it was by no means definitive anyway. We all have to make our own decision on that one.
The rheumatologist said she wouldn't consider treating me if I didn't have it done, but I decided I could live with that as I was reluctant to take DMARDs or immunosuppressants anyway. I haven't so far regretted that in the intervening 12 years, in spite of having had several flare-ups, including a very painful one just at the moment. In my case, SS goes in a series of flare-ups and remissions - the latter admittedly getting shorter as the disease progresses - so is generally bearable. I'm not, however, suggesting that this is the case for everyone. (Sorry for the bolding, but every time I say that SS is bearable for me for most of the time, it seems to upset a few of the folks who post on here.)
RubikinDSilva dianne12100
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I have every single symptom you' describe and tested for sjogrens ''normal'' also rheumatology discharged me on the basis i do not test positive for RA.
So i did some research and found out the test to have done in these cases is ANTI-CCP SERONEGATIVE which is a progressive arthritis condition.
By the way don't let the quacks fool you, SICCA is a synonym for SJOGREN'S.
Hope this helps you a great deal so you can finally get the treatment you have been waiting for.
x
margaret22116 RubikinDSilva
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Yes I agree with that. My understanding is also is that SICCA and Sjogren's are interchangeable.
aitarg35939 margaret22116
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Sicca is a medical statement that one has dry mouth & eyes, though they might be environmental or caused by medications, or due to Sjogren's. But Sicca doesn't show in blood work & biopsies; eventually Sjogren's shows in one or both kinds of tests.
margaret22116 aitarg35939
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Sorry but Sjogren's does not necessarily show in blood work. Currently no failsafe blood test for Sjogren's.
lily65668 aitarg35939
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Hello aitarg,
Glad to see you're well enough to post again after your recent severe health problems. I hope you managed to get an appointment with a maxillofacial specialist and will soon be feeling much better.
I agree with your comments on sicca btw. It's my understanding that it's a condition of mucosal dryness that is often part of Sjogren's, but can have multiple causes.
margaret22116 aitarg35939
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Blood tests can be done to look for antibodies in your blood. ... These canbe found during a blood test. But not everyone with Sjögren's syndrome has these antibodies, so you may still have the condition even if a blood testdoesn't find them.
And Sicca syndrome: An autoimmune disease, also known as Sjogrensyndrome, that classically combines dry eyes, dry mouth, and another disease of connective tissue such as rheumatoid arthritis (most common), lupus, scleroderma or polymyositis.
Makes me wonder why a doctor would look at anyone with those classic symptoms and fail to diagnose.
aitarg35939 margaret22116
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Yes, Margaret, and if you 'd continued reading you might have seen the words "& biopsies." Oddly, though, I've got docs who say it does show in bloodwork.
aitarg35939 lily65668
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Hi Lily
I think I owe you a p.m. I skipped trying to get that appointment in favor of seeing my internist today. It is remotely possible that some carotid gland massage I tried after demo at last support group meeting inflamed a nerve ,,, won't try that again. I'll see about that other appointment tomorrow. The rule around here right now is, see 1 doc, let them cause excruciating pain in exam which will be aggravated by all the talking, then go home & take pain pills & a muscle relaxer. Dentist still wondering if jaw/skull muscles are spasming.
lily65668 aitarg35939
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Oh, don't worry about the pm - I was just concerned about you! Glad you're OK - well, more or less. Yes, it does sound a bit too much of a coincidence that the pain started after trying parotid gland massage.
margaret22116 aitarg35939
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Oddly enough I used to have doctors like that too leading my treatment which is why I changed and now see a professor of genetics who is also an expert in vasculitis who doesn't believe diagnosis/treatment should depend on the uncertainty of blood tests and is currently working on a blood test which will reliably diagnose these conditions. It is so disheartening to see so many people suffering and struggling to be diagnosed and/or treated because of this insistense that there is a magic diagnostic tool out there. I am frustrated by constant cries for help on this and other forums from people who...like me....went round in circles for a long time trying to get doctors to understand how this illness impacts our lives. Like many I had to give up a career because I couldn't work with my symptoms. These illnesses, as you know, are life changing. I feel sorry for anyone with ill informed doctors who are not being taken seriously because of unreliable testing.
aitarg35939 margaret22116
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Yes, this forum makes me thank my lucky stars that when I was first diagnosed there wasn't even a blood test, just docs with good diagnostic skills. Who knows if I would've passed a blood test back in the early '90s? By the time I was given one in this century, it confirmed the diagnosis. Doctor's of all stripes rely entirely too much on tests rather than observation & good skills.