Sjogren's Syndrome: should I pursue a diagnosis?
Posted , 8 users are following.
Hello, I am a 30ish female and I've been experiencing symptoms of what I believe to be Sjogren's since I was in my early teens. I first went to a doctor for chronic joint pain when I was around 17 years old, after begging my mother to take me to get help. (I did not grow up in a healthy home environment.) Fear from my mother being present in the examination room left me unable to articulate my symptoms and the doctor dismissed my symptoms as a result of me being fat. (Not kidding.) Escaping my childhood house of horrors kept me pretty broke throughout my 20s, so I was unable to get any kind of regular medical care. The symptoms of fatigue and joint pain stuck around throughout everything. I started to develop severe dental problems and was accused of doing drugs by several dentists and a couple recommended dentures. An eye doctor noticed I had eye damage which I attributed to working outdoors. Fast forward a decade or so. Last year I was admitted to the ER with a corneal laceration do to severe dry eyes and I have been using eye drops 2-3 times daily ever since. I wake up every morning practically unable to speak my mouth is so dry. I experience difficulty swallowing at times, I have had over $10,000 of dental work done, have regular migraines, extremely dry skin, and still experience severe fatigue and pain. However the good news is I devoted the last decade to losing weight, getting financially stable and getting some kick-butt health insurance. I am now in a position to purse a diagnosis. Question is, do I want too? Is it worth it? My childhood and early life experience has not given me warm fuzzy feelings toward the medical establishment in general. I'm managing the symptoms as I have for decades and will continue to manage them after a diagnosis is made, the diagnosis will essentially change nothing. I'm concerned that the doctor's won't take me seriously, again. Plus people tell me now I could not possibly have accomplished what I have while still dealing with the symptoms I deal with on a regular basis. I really don't want to have to beg to be taken seriously, I would rather just keep on going like I have been. The problem is will the lack of a diagnosis harm me later in life. I don't want to wake up in some hospital on down the road with people saying if we had only known.... Does anyone have any thoughts?
0 likes, 16 replies
dryguy the71c
Posted
pointless you will waste most of your life and all f your energy chasing diagnoses from worthless idiots to no avail ... they will not diagnose and even if they did there is no treatment ! The only benefit is insurance if you are American
trudy98661 the71c
Posted
IF you can get a diagnoses, its worth it for peace of mind.
it will require multiple visits to multiple specialists.
you should try to get referred to a Rheumatologist for starters.
an Optometrist will test your eyes for dryness.
Blood work will be done throughout this quest.....
in the end you may end up with a 'possible diagnoses' or they may find an underlying connective tissue disease.
I hope you get some answers.
dryguy the71c
Posted
As a leader of several groups of AI and SS sufferers and someone with sero -ve SS ... I have to disagree as one may take 10 years of endless pointless tests and still be undiagnosed ..... The average time to diagnosis is 8 years and a large # never get diagnosed because there are no definitive reliable effective tests and no treatment ... So chase the dragon and waste what little energy we have left but in 6/10 cases it will lead nowhere ... just saying from personal bitter experience and that of over 6ooo members of the groups I work with. My opinion LIVE as best you can ( not easy) life to the full and don't waste time on Quixotic quests .
elisabeth38130 the71c
Posted
Hello
My name is Liz and almost 65. I was diagnosed years but I'm in the UK where med care is free but being diagnosed hasn't made difference in the long run.
If you have to pay for see a doctor about your sjogies I personally suggest that you don't bother and spend the money on eye drops, vitA eye cream, high fluoride toothpaste, mouth sprays, pain killers (whichever is your favourite) high quality vitamin pills and good quality skin cream - all of which you can buy over the counter and just spend the money on things that improve your day-to-day life as there is not a great deal that they can do about it - it can't be cured so why spend money on a doctor
Hope that helps
Regards Liz
Alazne19 the71c
Posted
Hello!
I think getting/or excluding a diagnosis of Sjögren´s is really important, for several reasons:
You are in your 30´s meaning you might be considering children. Well, if you do have Sjögren´s, your baby has a (low) risk of getting something called
congenital heart block, because of the antibodies that might be passed to it. So your pregnancy will have to be closely monitored, and should the baby have it, there might be something one can due during the pregnancy (Plaquenil, cortison, immunoglobulins, etc), or as soon as the baby is born, it will need a pacemaker in order to survive.Sjögren´s is not just tiredness, joint pain and dryness. It is a systemic disease, which means that it can basically affect several of our organs (gastrointestinal tract, lungs, central/peripheral nervous system, pancreas, etc). For example: lots of people with Sjögren´s have iron /B12 deficiency, because of celiac disease or atrophic gastritis. Iron deficiency doesn´t kill you, but B12 deficiency will leave you with permanent nerve damage and a risk of dementia. And yes, there is no cure, but sometimes, there might be treatments to alleviate the symptoms (Plaquenil can help with joint pain and with tiredness, cortison - might help against inflammation, and there is research regarding new treatments). Plus, some people, because of the antibodies, might have to avoid being in the sun, because it can trigger an autoimmun reaction, which can mean that they could get rashes, have more joint pain, be dryer, etc.
Sjögren´s means a 15-20 times higher risk than that of the normal, healthy woman, of getting a type of lymphoma (MALT lymphoma - mucosa associated lymphoma - so it´s a type of cancer that can affect every/any organ that has glands: salivary glands, stomach, lungs). This is a slow progressing lymphoma, that can be treated in the early stages, before it spreads. So, having the diagnoses of Sjögren´s, means being followed up even for this. And just because maybe here in the forum there are people who have had this for decades and haven´t got it, well that doesn´t mean you will be that lucky as well.
Knowledge is always power. You seem to have had a traumatic childhood: well, now there is evidence that shows that traumatic experiences can put one at risk for autoimmun diseases and that stress can make autoimmun diseases worse. So, managing your stress level, could help a lot.
And yes some doctors will be good, some will be bad (like in any field for that matter). So, doing your research before choosing a reumathologist is crucial (if you can choose one, that is).
Wishing you lots of luck,
A.
dryguy the71c
Posted
Problem is 40% of women and 90% of men with classic Sjogrens clinical symptoms are sero -ve and there is no 100% reliable or specific test or it. Eve lip biopsy has false +ve and -ve ... some 10-20% false -ve. So a clear diagnosis isn't always possible. Treatment even if diagnosed is not usually effective. As someone who has seen over 40 "consultants" for the systemic symptoms of SS and not 1 knew anything about SS and 5 rheumatologists who refuse to accept I have SS as I am sero-ve .. plus being a PhD biologist personally I have considerable ... poor experience. I also run 3 groups for SS and all AI and many of our members are undiagnosed despite years of testing and thousand of £ spent . By all means try but the original poster asked if pursuing was worth it. At present only methotrexate and plaquenil show any systemic benefit and both have significant toxicity and side effects so the risk benefit analysis has to be done. Sero -ve are rarely offered any treatment . Personally I would investigate Chinese herbals with some clinical evidence like white peony root and Chang shan .. they offer better systemic protection with fewer side effects.
Alazne19 dryguy
Posted
Hello DRYGUY!
In my post i am offering the possible benefits of having a confirmed Sjögren´s diagnosis. I had to see 3 rheumatologists in order to get a diagnosis: in my case the symptoms, an ultrasound of my salivary glands, a positive Schirmer test and positive anti-SSA were enough (although, i have to say that my antibodies were positive only one time, after that always negative). And yes, it was really frustrating having to be told i am imagining things, but when i actually met a rheumatologist who specializes in Sjögren, it´s when i got the diagnosis (this is why i am emphasizing the importance of finding a rheumatologist that specializes in Sjögren´s, if possible at a research/university clinic - so don´t go to the first bored, old rheumatologist whose practice is close to your home; research to see where is one that actually can something about this).
Also, with regards to medication: Plaquenil has helped me immensely with my joint pain and tiredness (and yes, i am aware of the side effects of Plaquenil, but are you really aware of the (side)-effects of Chinese herbals? Have there been studies to register the long term side-effects? If yes, please post them here, because then i might consider giving it a go.
Naturaldoesn´t equal no side effects. So many of our modern medicines, derive fromnaturalstuff, but still have side effects).I am by no means against trying alternative treatments, but it does feel like all too often on many sites/forums people are trashing allopathic medicine. Progress is slow in many areas, like in Sjögren´s, but patients can also give a hand to their doctors who are interested in research by going to regular check-ups, giving blood samples for different investigations and maybe participate in clinical trials.
All the best,
A
lily65668 Alazne19
Posted
Hi Alazne,
As a former nurse, I'm entirely with you on the potential side-effects of Chinese (or any other) herbal medicine. While serving in the British Army in Hong Kong in the 70s, I saw one death and a number of near-misses among families of Chinese government employees (entitled to British military hospital treatment) which were down to herbal treatments. There've also been a few deaths in the UK over the past 20-odd years, though I gather most of them were due to accidental substitution of the lethal herb comfrey in Chinese herbal products.
It is indeed true that natural doesn't always equal harmless. Many of the world's most dangerous poisons come from plant sources (ricin anybody?) and even those, like digitalis, which are medically valuable, can be lethal if given in uncalibrated "natural" form. My concern is that too many people equate herbal medicines with homeopathic preparations, which really are harmless - unless used exclusively to treat serious conditions which require stronger treatments, of course.
I consulted a homeopath (who was also a fully-qualified rheumatologist) when I was suddenly struck down with a mysterious and crippling rheumatic condition nearly 40 years ago, at age 36. Two allopathic GPs I'd consulted both told me that the multiple painful nodules all over my finger and wrist joints - which had been there for well over a month - were mosquito bites! By the time I got to the homeopath I could barely walk because of the pain in my hip joints, and my hands were virtually useless. He cured me completely in six months. To this day, I still don't know whether it was the dietary advice this doctor gave me, or the various homeopathic remedies he prescribed, but I'm still fine 40 years on, with only the normal joint twinges of old age.
However, given that 71c is talking about corneal damage due to dryness, I'd strongly suggest finding an ophthalmologist specialised in eye-surface conditions rather than relying entirely on alternative medicines.
dryguy Alazne19
Posted
I saw the top 5 so called SS specialists in the UK!!!!!!
The herbs I refer have been trialled and used without significant side effects . If you worry about cross contamination sure I agree .. but the same is true of pharma meds!
Progress in SS is nil as pharma has no interest in it whatsoever and the SS charities are pitiful.
+ve SSA is more commonly associated with SLE and the fact you only tested +ve once shows it was probably a false =VE ... which is quite common. I don't doubt you have the disease but I do doubt the ability , interest and discernment of medicine to cover SS ...
dryguy lily65668
Posted
and all they can offer is lubricants ... well here you go use hylo forte .. only thing that works.
Investigate autologous serum eye drops .. they may help via the growth factors and vitamins they contain which are lacking with tear deficiency in SS .
I have been to the 3 leading opthalmological consultants i the UK who specialise in SS and they recognise my medical knowledge ad research .. indeed have asked me to help design new trials! They will confirm my comments about treatments
dryguy lily65668
Posted
and all they can offer is lubricants ... well here you go use hylo forte .. only thing that works.
Investigate autologous serum eye drops .. they may help via the growth factors and vitamins they contain which are lacking with tear deficiency in SS .
I have been to the 3 leading opthalmological consultants in the UK who specialise in SS and they recognise my medical knowledge ad research .. indeed have asked me to help design new trials! They will confirm my comments about treatments
dryguy lily65668
Posted
and all they can offer is lubricants ... well here you go use hylo forte .. only thing that works.
Investigate autologous serum eye drops .. they may help via the growth factors and vitamins they contain which are lacking with tear deficiency in SS .
I have been to the 3 leading opthalmological consultants in the UK who specialise in SS and they recognise my medical knowledge ad research .. indeed have asked me to help design new trials! They will confirm my comments about treatments
dryguy
Posted
and all they can offer is lubricants ... well here you go use hylo forte .. only thing that works.
Investigate autologous serum eye drops .. they may help via the growth factors and vitamins they contain which are lacking with tear deficiency in SS .
I have been to the 3 leading opthalmological consultants i the UK who specialise in SS and they recognise my medical knowledge ad research .. indeed have asked me to help design new trials! They will confirm my comments about treatments
ShayRose lily65668
Posted
can sinusitis causes insomnia im still fighting with it no matter how tired im i cant drift off i feel lyk there's a custard or jelly in my head and its not allowing me to drift off lily ik that youre a former neuro nurse im taking alp 0.5 before bed time but some nights i sleep and some nights i dont can sinusitis causes insomnia jus want anybody to ease my mind posting this question everywhere on this forum but no body has the answer im asking to u cause youre an health professional thank u
lily65668 ShayRose
Posted
First of all, I'm not a health professional. I worked as a nurse back in the day, including doing a postgrad neuro nursing course and working in that area for 18 months. This means I still understand the basic symptoms of a brain tumour and the impossibly rare neurodegenerative condition of which you've recently been complaining in other forums. However, all of that was a long time ago, and it certainly doesn't qualify me as a "health professional" these days.
I have however suffered a number of severe sinus infections in the past, and I can certainly sympathise with your unpleasant symptoms. You've said elsewhere that you've tried antibiotics and they didn't work. There are two points to be considered here. One is that you have to complete the full course. I'm wondering whether you did that. The other is that not all antibiotics work for all infections. If the first one you tried didn't produce some improvement within a week or so of finishing the course, then the right thing to do would have been to return to your doctor. He would have tried another antibiotic, possibly taking a nasal swab too, to identify the bug causing the infection and its sensitivities.
I really do think you're working yourself up into a state of anxiety that's making all your symptoms worse. You even stated this yourself a couple of weeks ago, in a post where you said you were on the road to managing your anxiety and had started sleeping better. Why not try to re-establish that state of mind?
Please go back to your doctor and sort out your sinus problems. It might also be a good idea to get a thorough dental check-up, including X-rays. In my own case, I suffered recurrent attacks of sinusitis for several years until an oral surgeon finally identified an obscure dental problem that had escaped detection in normal dental check-ups. Once that was fixed, I had no more problems. You could also consider going to see an ENT specialist.
And finally, you need to stop posting compulsively all over the Patient site. As well as annoying other posters, and possibly getting moderated or even banned, by posting off-topic (as you're doing here) this isn't helping your anxiety at all. You need to get a full medical check-up, starting with your GP/PCP and dentist, to establish whether a physical condition is causing your insomnia. If that doesn't turn up anything, I'd strongly urge you to address your anxiety, preferably via some kind of "talking therapy" such as CBT.
I hope you'll soon be feeling better. We all go through phases of sleep anxiety at different times in life, and most of us emerge unscathed from these periods.