Perhaps I'm wrong

[JannaLee]

Jayne,

I agree with Linda, you should get another opinion.  

Janna

[Jayne]

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

[JannaLee]

Below is the best and most hilarious thing I've seen!  Chickpea is the smartest chick around!

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.

[cinmac]

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.

[KYMOM]

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

[lelole]

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

[Jayne]

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

[Dolly Dimples]

    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.

           
                 

[Chickpea]

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

[Rostradamus]

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