I will try not to go on too long but this is an update so far. I thought I'd found the answer to all my symptoms when I was researching my swollen parotids, it seemed as thogh I'd joined all the dots as it were.....
My dentist referred me to the Oral Medicine dept at Guys hospital and I have been for two appointments there so far, because of the severe allergic reaction I get when the parotids swell, Dr Escudier gave a possible diagnosis of 'Angio Oedema'. The blood tests he requested have (I am not sure which ones) indicated that this is not the case. I have however, got multiple strictures in the parotid ducts on both sides and an inaccessible calculus. I have got to go for balloon dilation of the strictures as soon as an appointment comes through, following that I have to see Dr Escudier in about six months time.
In the meantime I have seen a GP who did blood tests in November for CRP, Double stranded DNA, ANA and ESR, all of these have shown no reason for concern. I was told to go back if I was still getting symptoms (as I said, negative results do not make symptoms that you've had for years just disappear) She then advised me to see another GP who specialises in Rheumatology though he is not a Rheumatologist as such.
I saw him this week and was very nervous as I do not want to be thought of as a post menopausal hypochondriac. He was very nice but I felt he was sceptical of my thoughts.
At this point can I ask a question, are joint pains associated with Sjogrens always caused by RA? I already have OA in my lumbar spine and the doctor said that the constant pain I now have in my wrist is also OA. The pains in my elbows are definitely 'golfers elbow' caused by carrying shopping and the pains in my knees were something else.
The fatigue that I have suffered from what seems like forever is the menopause and so of course is the vaginal pain. He could not put the Raynauds down to anything else though.
So I think that based on that he has requested further bloods Rheumatoid factor, ANA (+Ro and La), Immunoglobulins as well as Bone profile and Liver profile. He hasn't totally dismissed Sjogrens but if none of the tests show anything he will not refer me. He mentioned a lip biopsy but said that he wouldn't advise it because of side effects.
I have to go back when he has the results so I will let you know how it goes, though I really don't expect anything significant to show in the results.
Thanks for listening,
Jayne
hi Jayne :)
It sounds to me as though you've been joining the dots but the docs aren't. Your GP - based on blood tests - seems to be treating all the symptoms as though they are totally unrelated.
Of course we can have other things as well as SjS. As far as I know - osteoarthritis is not caused by SjS. The pains one gets from SjS are NOT always RA though. It's possible to have inflamed connective tissue and that can cause joint and muscle pain. I have OA in at least one knee and both shoulders and possibly elsewhere but when the top of one shoulder and my neck get sore, my GP recons that's inflammation - not OA and the two together can be an uncomfortable mix.
Good luck with the test results. I hope they take you further forward. Keep us posted.
Take care - Scottie :)
"Listening" is what we all do best here...it helps to get things off of your chest and put it down in writing.
I hope you get some answers from all of these tests so they can effectively treat you.....and even if they don't want to give you a diagnosis based on all of these symptoms (which by the way do seem to fit into a sjogrens diagnosis...but who am I? Certainly not a doctor!) then I hope you have a doctor who is open minded enough to at least treat your symptoms separately so you get some relief!
As far as your other question...I also have the muscle and joint pain you mentioned and mine is caused by the sjogrens, fibro, and OA....I don't have RA.
Keep us updated on how it goes for you when you get all of the results.
Thanks Scottie and Lynnmarie, I will keep you posted but it will be some weeks before I know any more. Two weeks before blood tests, the NHS wheels move very slowly.
You are all such good listeners,
Jayne
I did recently read that the joint pain from Sjogren's does not cause deformity of the joint, unlike RA.
It sounds as though you have tendonitis in your elbows. Tendonitis is very common in people with sjogrens. Carpal tunnel is also a problem that many people have and also the achilles tendon can give people fits. I had tennis elbow for years and would have to wear a brace a lot to keep the symptoms down during any activity.
Yes, it does sound like your doc is separating all your "owies" and giving them a different name. I would hope that he would know that sjogrens causes all sorts of problems. Also, angioedema is an allergic reaction and people with sjogrens or any autoimmune disease are more likely to have hive issues or swelling with redness. Obviously, your salivary ducts are damaged and you have a stone very likely caused by sjogrens. None of my ANA, Double stranded etc were negative for years and I just kept getting sicker. They did not convert to positive until after many years of problems and running from one doctor to another.
If you have Reynauds it is very likely that you have another autoimmune disease. Have they checked you for Hashimotos or autoimmune thyroid disease. Sjogrens is often found with Hashimotos and RA. Also, the osteoarthritis is something that a lot of the population has as they get older. Aches and pain in joints and muscles are very common with sjogrens and the fatigue can be overwhelming. Hope your doc can get in gear and put the symptoms together. Can you print off an article from this site that or the web that talks about all the problems that Sjogrens patients can have. It isn't just dry eyes and mouth. Good luck. Irish ;D
Jayne
through all this you will come to appreciate the term "hurry up and wait"
it can take some time for these things to be sorted. Hang in there buddy. htere is light at the end of the tunnel
Pud
Jane, I just re-read my post from last night and I sure sounded like a bossy, know it all. I apologize for coming off like that. I am not a doctor but can relate to the docs having all these different opinions. It has happened to all of us in one way or another. It really is a hurry up and wait situation trying to get diagnosed. Also, autoimmune is not a disease for sissies as one must just perservere until you think you can't make one more doctors appt and then finally, somebody gives you a diagnosis. Hope that you can hang in there for this to happen. Good luck. Irish
Irish here is an excellent one..very thorough and informative..hope it helps
http://dry.org/fox20020816/guide.htm
Kim
Irish, please don't think that you sounded bossy, I didn't read it that way at all. I am grateful for all responses.
Thanks again
Jayne
One thing I forgot to say was when the doctor asked about dry eyes, I said that they aren't exactly dry but my vision gets blurred. I find it difficult to describe but it is more like a film over my eyes. I can be reading quite happily one minute and then find I'm struggling because of the blurriness. This gets really bad on an aircraft when I have all the time in the world to read, and have to give up after a few minutes.
Anyway the point I was going to make is that he said if my eyes didn't feel gritty then it was unlikely to be Sjogrens.
Jayne
Hi Jaynie,
I only have Sjogren's Syndrome and Raynauds.
One of my worst symptoms is TERRIBLE joint pain and muscle aches. I do not have RA or any other type of arthritis.
Another worst symptom is fatigue. Coincidentally, I thought mine was from menopause too.
In my opinion you need to be seen by a rheumatologist. If your primary doc will not refer you, maybe it's time to see his partner or change to a different guy?
I'm so sorry for all this!
Janna
PS. Irish
You never sound bossy and since you DO "know it all" your remarks were perfect! I love to follow your posts with "I agree with Irish..." or "Irish is right..." I makes me look smart too!
Went back to Doc's on Thursday, he is still separating the issues. All blood tests normal as I suspected they would be. I don't like him, he seems very self opiniated. At the moment I have pain in both elbows my right knee (behind the knee) and my right wrist. He asked me which was the most debilitating and I said my wrist (I am right handed) he still insists that it is arthritis, but I am not convinced, would the pain of OA escalate in the last six weeks to the extent that everything I do causes pain? All the little things like cleaning teeth, dressing, writing etc etc the list goes on (dropped a teapot full of tea the other day, luckily it was cold). The pain is on the inner wrist bone and thumb movement seems to cause it to hurt more. I wish I could describe it properly. He suggested that I take codeine/paracetamol for the pain and Ibuprofen when it gets really bad, I though it was the other way round, perhaps one of you nurses can help me with that one. I have no swelling at any of the joints.
For my knee he said that I really should excercise more (I'm on the go all day at work), that isn't excercise he says you should do running and jogging. I thought that was bad for knees?
Have taken to wearing a wrist brace just at work, which I didn't really want to do because I'm afraid of making it weaker. He has said that he will give me a cortisone injection, but I have an appointment in two weeks time for that.
Think I will have to go back to the other doctor and at least request an xray to confirm the OA diagnosis.
Sorry to go on, but he depressed me again, at the age of 53 I feel like an old crock at the moment.
Hope you all had a good Easter weekend, I was at work today, the only day that we had good weather, typical!
Jayne
Jayne, I think you're right about going to the second doctor...the one you just saw seems to have his very own theories and approaches that don't appear to go along with most accepted medical practice!
While strengthening exercises (shallow squats, lunges and leg lifts) are excellent for the support system around the knee and may improve arthritic symptoms, high impact exercises like jogging are usually avoided. In most cases, plain Tylenol or NSAIDS are suggested for "everyday" pain, and narcotics like codeine (or combos containing codeine) are used for more severe pain.
Of course I can't diagnose anything, but what you say about your thumb and wrist sounds remarkably like pain that I had that was diagnosed as deQuervain's Syndrome (a type of tendonitis)...maybe you could search for that and see if you feel it applies. If that does prove to be the case, NSAIDS would provide more relief because of their anti-inflammatory effect.
An x-ray may not tell you much, because OA doesn't show up until it is severe and has caused noticeable bone damage.
Hi Jayne
I think you're right that you need to see another doctor. Is the one you've just seen the 'rheumatologist-who-isn't-a-rheumatologist' that you mentioned? You're entitled to consult another specialist through your GP. Maybe ask around for recommendations; I have a great rheumy here in Brighton and I've heard there's a very good one in Birmingham. It might be worth the journey. (Having said that, I think you'd be hard pushed to find a doctor who isn't 'self opinionated' as you say your current one is!!)
Like the others I can't diagnose anything, but I have to say that your pain sounds very similar to joint pain and weakness that I have and that I've been told is SjS related; but also similar to a friend who has RA. The difference seems to be that in SjS we don't get joint distortion although the pain and disability can be just as severe. Dropping the teapot could also be SjS related and that's to do with weakness and/or neuro issues.
Linda's spot on about both exercise issues and pain meds. In both cases it sounds as though the doctor got things the wrong way round. Paracetamol & codeine is not something you want to be taking long term; a cover of paracetamol (ie 8 tablets a day) is often prescribed for generalised pain and can be more effective than you might think. But many people find codeine hard to adjust to. Ibruprofen and stronger NSAIDs would work with the paracetamol and actually address the inflammation issues. Your GP should be able to help you work out the best programme of pain meds, or refer you to a pain clinic.
I love the idea of us all jumping up and going jogging. What an obvious and helpful suggestion for him to make! After a day at work on our single sunny day I think the most exercise you should do is lifting a tea cup to your lips and maybe a slice of chocolate cake.
Have a restful evening and take good care of yourself - Chickpea
Jayne,
I agree with Linda, you should get another opinion.
Janna
That's the one Chickpea! Can't talk long for now will be in touch tomorrow. You've all sort of confirmed my thoughts so far. Forgot to say, when I saw him this time he looked through the notes on his computer from my previous visit and told me how thorough he'd been! Actually I think that was me.......
Thanks for everything
be in touch soon
Jayne
Below is the best and most hilarious thing I've seen! Chickpea is the smartest chick around!
Quote from: Chickpea on April 13, 2009, 12:27:36 PM
I love the idea of us all jumping up and going jogging. What an obvious and helpful suggestion for him to make! After a day at work on our single sunny day I think the most exercise you should do is lifting a tea cup to your lips and maybe a slice of chocolate cake.
Hi, I hope you do get another medical opinion. I have tested negative on every test except for an elevated haptoglobin and an elevated liver profile. However, I have classic Sjogren's symptoms. Although the rheaumies don't use the diagnosis with me, as one of them said, if it quacks like a duck we should treat it like a duck so that's what they did. You need a doc that will work with you on this because auto immunes are not cut and dried. I saw a specialist in Boston who is supposedly one of the world's experts on auto immune disorders of the eye. He told me they know there are hundreds of auto immune disorders that do not show up on the present day tests and that can mimic and or overlap with SS, so if your tests come back negative it does not mean it is not auto immune. He lso told me that some doctors really do not understand that SS is a systemic disorder and effects our whole bodies not just eyes and mouth. In fact, before I became really really ill, I had a PCP who told me that SS was just an inconvenience and nothing to really worry about!
Another thought- I was told by a physical therapist that the joint and muscle pain can come from the fact that the sheath that lies over our muscles can be dry and does not glide as it should, which causes inflammation and pain. I don't know where she got her data but it sounds reasonable. I have OA in my spine, but I also have joint pain in joints that do not have arthritis, and tests for RA are negative. I also have severe muscle pain but not in the traditional fibro trigger points so I have to say it is plain old miserable SS. I respond reasonably well to steroids and take tramadol and NSAIDS for pain.
I hope this helps. I think it is so difficult not to have a solid diagnosis. After a while you begin to doubt yourself, but I think we know our bodies better than anyone. When I get discouraged I think of my aunt. She developed Lupus before they used the antibody test-or at least before they used it widely. A doctor told her she was a hypochondriac and belonged in the loony bin. That is until she began to bleed out one day because her colon fell apart. She is still alive and kicking at 85, and now that they can test for Lupus her tests are positive. She knew all along she was sick, whether her doctor knew it or not. So keep the faith.
Jayne, Sorry for all that you are going through. I don't know if it is the same thing but last summer and fall I had a terrible time with my wrists and hands. The hands would just freeze up and were quite painful and I couldn't move my fingers to make a fist and my wrists would hurt and throb. I would have flare ups where I had to wear braces on both hands to help with the pressure and pain. I went to my regular doc when I had the problem and they could not determine what was causing the problem. Through trial and error I found out the my problem would occur when I would hold my book up to read. Holding my elbows at a right angle and grasping the book in front of me with both hands would cause my hands to "freeze" after reading. I found that if I rested a book on a pillow or blanket to read instead of holding the book up that my hands would not hurt and my wrists would not hurt and throb. No more braces. Like I said, I don't know if this is related. Also, when I read my eyes also film over and it takes a while for my vision to go back to normal. I believe it is because when I read I blink less and this causes my eyes to dry out more. I have always read books instead of watch TV and now find that I cannot read for as long of a stretch as I used to. Hope you find out what is causing the pain. Roxanne
Hi Jayne,
I am sorry I don't have much else to offer than the great advice given to you by the others as I am quite new. Having read your posts it does sound like you are having difficulty getting your doc to take you seriously with negative blood tests. Two things to add really, firstly, if the referral is to be within the NHS, the GP is charged for each referral he makes - not true for private referrals, so is there anyway you could afford to be referred privately?? You might be able to force his hand a little easier?
Secondly, GPs quite often listen to official patient groups, so it may be worth printing of some of the info on the British Sjogren Syndrome association site to take into the doctor to back up the symptoms, and the fact you can have a diagnosis without positive bloods...
Hope that helps a little...
Leah xx
Hi everyone, thanks for the replies. I'm really depressed right now. Linda, you were right that my wrist problem was deQuervains I did my own research and when I went back to the doctor I told him that it was the tendon not arthritis. As he was giving me a cortisone shot I wanted to make sure that it was going in the right place. That was on the 30th April, all he told me was to not use it for 4 days, and not to use a splint. When I went back after two weeks for a follow up, he asked if I was using a splint to support it, as if I didn't he couldn't guarantee it woudn't happen again. Now I'm worried, he didn't give any advice about what to get, I can not find the right thing in a chemist so what do I do?
Also he said the fact that I have tendonitis in both elbows and the back of my right knee is just bad luck, I could have an underlying problem and all he will do is repeat blood tests in a years time.
My life is just pain at the moment I can't do anything without something hurting, we are trying to get rehoused at the moment which is causing me stress, work is causing me stress and I can't even say to my boss that I have something wrong that prevents me doing some things I just feel like giving up on it all. I used to be quite good tempered at work (at least) now all I do is snap at everyone all the time. I want my life back.
Love to all
Jayne
Poor Jayne, yours is a typical reaction after a visit to a so called Specialist!
Heed some of the advice here, and arm youself with all the info available, take it with you next visit..
Then say "hey this is how I feel and I really need help please"
I know it is not easy in the UK to pick & choose the best man for the job, but it's your right to ask for a second opinion..
chin up , Dolly.
Hi Jayne
This isn't good enough and you shouldn't be suffering like this ... mini rant from fellow Sjoggie! It really isn't right that he's giving you incomplete answers and half a treatment. 'Bad luck' as a diagnosis isn't good enough. Maybe a different doctor is the answer as Dolly says?
Or maybe a physiotherapist who specialises in wrists and other joints? They're the ones who can make hand splints moulded to your hands, suggest exercises to support your wrists, and have ideas for pain relief. You have to have an initial referral from your GP but if they mark it urgent - you'll need to insist - you should be seen quickly. You could try telling them that you're happy to take cancellations so that you can be seen sooner.
I've been seeing a neuro physiotherapist for about 3 years and it's been really helpful. It seems that some of my wrist pain was due to the odd positions I'd been putting my wrists in as a way of stopping my hand tremors. Wrist splints have helped a lot. They've also provided me with comfortable - but ugly! - leg braces. The rep from the company came to my appointment, and he and two physios analysed my walking with and without three different types of braces. It only took a week for NHS management to agree to pay for them in full. You can't find the right sort of supports at the chemist, but there are lots on the internet. Best done with the help of a physio, I'd say.
So sorry to hear that life is so stressful. Health, home and work stresses all at once is a heavy burden. Does your employer have a good Occupational Health department? You can contact them in confidence and your manager shouldn't be told anything. Or you could just say it's RSI or something like that.
Hope the rehousing is sorted out soon. Please come back often and tell us how things are going with you.
We're thinking of you - Chickpea
A web site I keep telling people about is WrongDiagnosis.com since it has a symptomes checker of up to six different symptoms. Also PDRhealth.com and mayoclinic.com and medlineplus.com .Chech them out. I can tell you from literaly thousands of pages of research: Lip biopsy is considered the "golden standard" and is correct only50% of the time, plus it it absolutely essential the person doing the test is experienced at it,if you don't know exactly what to look for it is easy to miss. Also Anti-SS-A(Ro) shows in about 70% of cases, Anti-SS-B(La) in 40%. and thenat different point during the disease. Yes joint pains in Sjogren's is fairly comon and doesn't always show in RA factor. I am now showing high RA and other possitive only for RA test. Meaning I am probably getting classic RA now. One autoimune opens the door to others. Special. Go to www.labtestsonline.org check out autoimune panels and tasts ,download there; autoantibodies and related disorders, chart. Don't be left in the dark .Sjogren's is a very difficult diagnosis. When looking for a DR. ask people who have or know someone who has an autoimune disease. Ask the office if the Dr. has any Sjogren's patients, and more importantly, has he ever diagnosed it. Have them call back after they actually ask him, do not go by off handed assurances. Go to Sjogren's Syndrome Foundation and read what they have.Down load things to show and discuss with the Dr. ask questions to see if he is familiar with with your issues. If not keep looking. Know as much as you can to help.So much I ,can tell you , I'll help with the real technical hard to find and advanced stuff. My eyes and back Limit me greatly . Post Question For Rostradamus and I'll get back soon as I can .At times it is many days befor my eyes and back even permit computer use, in fact screanin' pain now gotta medicate and lay down. Hope The sites help , I'll chech back in on you . Best wishes Rostradamus