Sjogren's Syndrome Progression To Hodgkins And Vasculitis
Aug 5, 2008
I was diagnosed with Sjogren's about 13 years ago and I am now 53. Initially the dry eyes/mouth was a real problems but have learned to control moisture pretty much by medication and self-help (I prefer the self-help but appreciate medical help occasionally). 5 years ago I had Non-Hodgkins lymphoma which presented as a lump in the roof of my mouth (successfully treated with radiotherapy which also slightly improved my saliva production). Now all-clear. Since November 07 I have had numbness in my feet and then March 08 very red swollen ankles/feet and red spotty rashes (various locations). I was referred to the rheumatologist who has now diagnosed Vasculitis so I am on a 6 week steroid dose. Fingers crossed!! I just wanted people to 'be aware' that other symptoms could possibly occur and to be aware that they are connected to Sjogren's (I have been given very little useful info in 13 years!). As someone said before it's one thing having this but totally another trying to explain it to people. It is one of those 'unseen' medical problems which the sufferers have to deal with pretty much on their own. Except that we have forums!! Let's talk and discuss ideas, self-help. Keeping positive has got to be better than letting the symptoms 'get to us'. My main concern at the moment is how this may affect my full time employment - is this recognised as a disability here as it is in the United States?
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I've noticed a few times that after standing relatively still for long periods of time (i.e. at a concert), the lower half of my legs is covered with a strange rash by the end of the evening. It's not itchy, not painful, but very visible. Of course, standing for long periods of time is painful on my joints, etc., but the rash itself isn't painful. With that though, my feet often feel strangely swollen and hot after lots of standing; that part is a little painful. I finally looked it up last night after it happening again and came upon something called "Vasculitis." I've made an appointment with a Rheumatologist to discuss further, but I'm curious to know if others have have experienced this. I generally ignore my symptoms and power through because I'm no fan of fussing, but this strikes me as a little stranger than dry eyes and creaky joints.
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Started with a tremor in my hand last year saw a general neuro who thought its maybe related to chronic pain i suffer and to keep eye on it be re referred if it changes now it's gone to my arms and legs my balance is poor keep falling over my muscles are stiff as a board i get tremors after using my muscles say even drying my hair and also i keep stiffening up so bad my body just wants to stretch itself out from head to toe worse during the night i have also started with restless leg syndrome i'm also getting confused and forgetful has anyone else experienced parkinsons onset like this i'm wondering wether to be referred back to a movement disorder specialist?
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I have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Beighton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side
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Having been officially diagnosed with Sjogren's syndrome about a year ago, I think back on ALL the diagnoses I have had related to it: "nutcracker esophagus and severe GERD", "esophageal spasms", polyarthritis, fibrotic lymph nodes, fibromyalgia, Prinzmetal angina, benign parotid tumor excision (trabecular adenoma), dry skin, dry mucous membranes, etc. and now know they are all part of the same syndrome, which has been steadily worsening and becoming more malignant (and I am only sixty). There are many other more serious difficulties, but now I'm wondering if I, too, will get non-Hodgkin's lymphoma, since that is what some people progress into. It is NOT that this frightens me at all--but now there is something of which to be aware (and I'm not certain my M.D. knows of this). I also have glaucoma and cataracts--so I really have to protect my eyes (and I have had a vitreous bleed into one of them).
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My ophthalmologist (a retinologist) placed upper and lower tear duct plugs in my eyes--which has helped, but I still have to use lubrication. Since I am a writer and use the computer extensively, I find it quite hard on the dry eyes. I am extremely careful to drink lots of water and often mix pure fruit juice with my water to avoid calories (sugar) and to make the water more interesting. This does, however, exacerbate my stress incontinence gained after fracturing my back--for which I stay close to a toilet (but my writing is done at home.)
My dentist told me today that I need upper dentures due to Sjogren's Syndrome. Has anyone else had to get dentures and how did you deal with it?
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Anybody tried it? I've just started. I'd been reading up on it on-line for some time. It's supposed to be the bee's knees for the whole sicca syndrome, and dry eyes in particular. As I was due to spend a few days in London last week, I debated getting some, but decided it was too expensive.
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Then fate took a hand. As I haven't had dry eyes for months now, I didn't take my eye drops with me. That's the trouble with remissions - you forget you've got the wretched condition and get cocky! First night in the place where I stay it was a bit stuffy, so I turned on the air-conditioning for half an hour. One of those individual ones that blows air out fiercely however low you set it. I sat up in bed, facing it, watching the TV for just half an hour before going to sleep, but that was enough. I managed to get replacement eye drops the next morning, but now I'm in big trouble. Decided to invest in the sea buckthorn oil anyway, and have now been taking it for a week.
They say you're supposed to take four capsules a day for the first two weeks then cut down to two, but I'm being careful. Took one a day the first week, will start on two tomorrow and build up to four by the end of the month. I once had a terrifying experience on a low starter dose of Siberian ginseng. Just because something is "natural" doesn't mean it won't harm you!
Sea buckthorn is also said to be good for RA. The main ingredient is Omega 7, btw, but it also has Omega 3, 6 and 9 - though a different type of Omega 3 than fish oil. I'll be interested to see how that works out. I'm actually having an RA flare-up at the moment, but it seems to have peaked since I started my usual homeopathic treatment a few weeks ago. As I'm taking the oil alongside the homeopathic remedies, that will muddy the waters, of course. But I'll stay on the homeopathy for six months because it always works.
I hear you have to wait three months for Omega 7 to kick in, so I may be in for the long haul with the dry eyes. My right eye is already starting to bleed from a crack at the outer corner. We're having high winds here at the moment, which isn't helping things, particularly as my hips and knees have now improved enough to stand a 45-minute walk most days. I finally caved in today, and put on my wrap-around industrial goggles (provided by an optician in the UK). But I feel a right berk wearing them when walking around city streets - especially as it's not considered rude to stare in this country!
My mother has been diagnosed with Sjogren's syndrome. Her main symptom is dry mouth and someone recommended us product called Biotene. Is Biotene really enough to contain this syndrome?
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I get bladder infections quite often. For the last year I've had 6. I get very sick with them. I run a high fever and am in alot of pain. They last for a couple of weeks. I have to take antibiotics for them and worry about having to take so many. Does anyone else experience this problem or have any suggestions?
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I have had dry eyes for about 2 year now (I also had lasik in 2005). Within the last 4 months my have have gotten really dry. I have all 4 tear ducts plugged and I am on Restasis. I also use sclera lenses (more for vision but also helps the dry eye). My eye dr said he thinks I may have Sjogren's even though I have never has a Schirmer's test (I am not sure how accurate that would be since i have had lasik anyway). tested positive for ANA 1:80 titer with homogeneous pattern but negative for RF and SSa and SSb. Should I pursue this further? Dry eyes are the only symptom I have.
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I was wondering whether depression is actually a symptom of this illness. I understand that it is natural to feel depressed when receiving a diagnosis of chronic illness, but my current mental state feels like something much more insidious and severe. I have never felt depressed in this way before, even when I got a diagnosis of another painful AI condition 8 years ago. I also know that mental stress can negatively impact symptoms so it is vital to 'feel better' quickly in order not aggravate the condition. I am not sure how to start to do this and wonder whether systemically something is going on that is affecting my brain chemistry to feel this bad.
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I have had chronic bronchitis/sinusitis for years.
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Had sinus surgery due to level of sinus issues.
I don't get a cold, I get bronchitis - pneumonia/pleurisy, etc.
I have cold sores on my lips often.
In june I was diagnosed with an eye ulcer - I have never had any problems with my eyes. Ophthamalogist did test and said my tear ducts have stopped working.
I have blurred vision and my eye sight is deteriorating.
Tingling toes and fingers
Migraines for years
CT of chest shows enlarged lymph node in lower right pre tracheal region 2.5x1.4x0.8 and they want to do another ct in march
sore throat and coughing they just prescribed prilosec for acid reflux and although I've never had heart burn or anything like it, it's working....
I have testing borderline positive for lupus one time and negative the next. 1:80 Homogeneous Pattern
RA factor was -9.0
Igg subclass 3 LOW at 21 everything else normal
No lyme disease
White blood count tends to be a little high
Seg tends to be at about 80%
Lymph tends to be low
SED rate was elevated
CPK was normal
First appt with rheumatologist on the 24 of Feb. any thoughts on what this could be? Sjogren's seems close but I have no dry mouth Would really appreciate it.
My daughter was diagnosed with Sjogren's Disease I was just wondering if there is anyone that has this Disease, and to inform me how they are living and coping with pain and day to day living. She is only 20 years of age.
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i have had sjogrens since I was 41 years old, I'm now 74 . I've been told there's nothing can be done for it, it's just as I've got older I ache more and get extremely tired,I do go out walking with my dog to get some exercise, have a sit down , then do a few jobs , then sit down and so forth , sjogrens is not life threatening, but it changes your life completely .but it's nice to keep in touch with people who has this horrible condition.
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I have been in pain for about 8 years now. Whole body hurts, mainly back, traps and neck. Dry mouth and down there where it matters. I never feel good, cant remember when last I did. Often dizzy, always very tired, I can't exercise at all, used to be a personal trainer and now I can't even walk to the shop. I feel dead and hating every minute of it. Don't have a lot of faith left in doctors as they have been giving me quite the run around. Now, I am on a mission to sort all this out, went for blood test, twice and both times came back positive for Sjogren's, but the Rheumatologist still doesn't think I have it as I don't have dry eyes. Can I have it without dry eyes? I don't even want to ask her questions anymore, seems like you not supposed to ask doctors questions, just sit, listen, accept and feel like poo for the rest of your life. I also have 0.00 testosterone.
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I was told i have Sjogren's syndrome and now about a week ago i got this burning on top of my head and to be honest it is unbearable i need to know what can i do please help me it reach to the stage am always crying the burning is too much it feels like it is going inside my head and also i have alot of face pain.
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I was diagnosed with underactive Thyroid 18 months ago by a doctor who was just standing in for my regular doctor, I had been going to the doctors for 2 years with little complaints but nothing was done as I had been on antidepressants. Since starting the Thyroxine 100mg daily I don't feel any better. My doctor even told me depression can do things to the body like the symptoms I am having.
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10 months ago I started a new job 3 months into the job my hands began to swell and I have pains in my fingers the doctors took a blood test but said there was nothing wrong however I saw another doctor at my surgery and she referred me to the hospital rheumatology . The specialist took another blood test as the one my doctor took showed an abnormality, she also sent me for several other tests. Once all the tests where back the specialist diagnosed Sjogren's Syndrome and mild rheumatoid Arthritis in two fingers that don't hurt as much as the others! I have been on Naproxen & Plaquenil for 2 months and due to go back to the specialist in September.
But I still don't feel any better!! and my IBS has become worse. I have changed my doctors practice as I have lost confidence in my previous doctors however I am not sure this new practice will be much better!
I had my first appointment with the doctor I told her my symptoms and for the past 3 weeks I have been in pain with IBS, she concentrated on this problem and stated that I should come back again as "10min appointments were not long enough to go through all the issues I have." Told me to book for another blood test which will be next week.
Long and Short- does anyone else relate or recognise these symptoms?
1. For the past few years I have been having problems with my memory. I forget what people have said to me, forget to lock the door, where I have put things what I was going to do next. I have always been a little scatty but it seems to be getting worse and many times it is only other people reminding me that I realise that I have forgotten or not done something.
2. Lethargy, weary even after just waking up but gets worse around lunch time and by tea time I feel like I should be in bed. I have always slept approx 7-8 hours but I don't feel refreshed after sleep.
3. Painful cramps, wind, constipation I will only go to the toilet if I have Movicol or a few halves of Guinness. My urine is dark and sometimes cloudy
4. Dry Skin and itchy spells where I could scratch the skin off, Dry eyes and mouth
5. Aches and stiffness all over and clicking wrists, elbows,shoulders and knees
Does anyone here experience inflammation of skin of their face?
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I am concerned about my memory, 32 year old, diagnosed when I was 30. Mind goes blank, forget names of people I know. Mentioned this to my consultant and told it's just the tiredness. Mentioned it on another occasion and told I'd have to see my GP. Eventually went to my GP who said they'd never heard of SS causing memory issues but I've had people on the BSSA say they have the same thing. When I went to my GP I was presented with a sheet of paper with tests I felt were embarrassing, both me and my GP agreed I could quite easily pass these but if for any reason I didn't she'd have to refer me to a psychiatrist which she really didn't want to do. I agreed there's nothing wrong with my mental health but I would have thought I'd be referred for a MRI. Why do I get brushed aside - this condition is bad enough without being ignored as well. I'm just about holding onto my full time job. I even go light headed but no one seems to care. I'm now faced with going private, thankfully I have private healthcare through work but not everyone does.
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I suddenly was diagnosed with Sjogren's Syndrome 4 months ago. I had dry mouth for a year and my breath started to smelled so I thought it was a bad tooth. I started getting my teeth cleaned every 3 months.
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Four months ago my eyes were constantly bloodshot. I am on resistais and I had plugs put in my bottom eyelids. I have tried numerous things. My eyes look horrible and my work keeps commenting on them. I want my eyes to look good so my boss will stop asking me if I got enough rest. I am the sole provider for my family and I don't know what to do to get my eyes to look normal again. Has anyone tried anything that works? This is my first posting about Sjogrens because I don't want to believe I have it but my eyes keep reminding me. My mouth has gotten better since my eyes and stomach have been attacked over the last four months. I am on nexium so my stomach is better but I was on nothing for years. I am only 43 years old so I am confused why this is attacking me now. My mom has MS and Rheumatoid Arthritis so I might have received it from her. She wasn't diagnosed until 55 and she had all of her systems in her 20's.
We all know that the dry mouth of Sjogren's syndrome can have a devastating effect on teeth. But have any of us had experience of dental problems bringing on SS?
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I've been doing a lot of reading lately on the question of root canal procedures bringing on degenerative diseases and even breast cancer(!) I'm sure most people on here already know the theory behind this but I'll re-state a simplified version anyway. The idea is that it's impossible to sterilise the dead cavity left behind after the nerve is removed, and once it's sealed with a crown, anaerobic bacteria start growing in there, and migrate to the bloodstream.
Now, I had a badly botched root canal on a molar in my lower jaw in 1995, and that was the year my SS symptoms started. I never ceased to have problems with the tooth after that, culminating in a nasty abscess in 2007. I ended up as an emergency in maxillo-facial outpatients over that one. The surgeon who finally removed the tooth and scraped away the infected bone confirmed what I'd long suspected - that the tooth had been broken through the root either before, or during the process of, the root canal. Needless to say, I changed dentists after that.
Later that year, my SS started the slow process of going into a remission that was more or less complete two years later and lasted about six years after that. I'm just recovering now from the first flare-up since then, which has lasted nearly a year. However, this flare-up hasn't been nearly as bad as the original attack of SS. It's tempting to make a connection with the root canal.
However... I'm not totally convinced that that's the whole story. I suspect my SS is secondary (though that's never been confirmed by a doctor) as I had a very severe attack of RA in my mid-30s, 15 years before my first SS symptoms. This came out of the blue, and was seriously disabling while it lasted. It started suddenly in my right hip while I was out walking one day, and within a few weeks had spread to both hips, knees, big toes and hands. For a couple of weeks I could barely get out of bed, and had to be signed off work. I had the great good fortune to be put in touch with a homeopathic rheumatologist (who was a medical doctor too) who cured me with homeopathic remedies and dietary advice. I continue to have occasional problems with my joints, but nothing like that first attack.
But that may also have been tooth-related, albeit not root canal. Six years before the RA attack, and just before I left the UK for good, I had a small filling in an upper molar. I was in severe discomfort afterwards, and could feel a lump on the outside of my gum, just above the tooth, which was clearly a piece of filling that had been shoved up between the tooth and the gum. (I'm afraid I don't seem to be very good at picking dentists!) I went back repeatedly, only to be fobbed off each time, and after a couple of months a large piece of filling duly worked its own way out.
The same year the RA struck, I had the first attack of pain in the badly filled tooth. For the next 10 years I had intermittent attacks of severe toothache and mild sinusitis. I saw five dentists in two different countries during that time, all of whom X-rayed the tooth and could find nothing wrong. Finally, after a severe attack of sinusitis on that side (fever, swollen face, one eye closed, foul-smelling nasal discharge) my doctor referred me to the hospital, where it was discovered that there was a hidden infection in the inside root of the tooth, which isn't visible on a normal X-ray. The tooth was extracted, with great difficulty as it had become ankylosed into the socket by the infection, and a deep curettage of the infected bone performed. I was told I was very lucky the infection hadn't broken through the bone into the maxillary sinus.
Not sure what to deduce from all this - apart from the fact that rubbish dentists exist on both sides of the Channel! - but it's tempting to suspect that most of my auto-immune troubles might have originated in my teeth.