Newby - Not diagnosed and Confused!

[TOB]

Hi all,

I am really glad that I have come across this site and hope that some of you may be able to give me some guidance!

I have suffered from Raynaud's for years now but only about 3 months ago did I realise the syndrome even existed! I found out through a friends friend who had been diagnosed with Raynauds and then Lupus. I just put my Raynauds down to 'bad circulation' and that was the conclusion of several doctors! well, I went to my doctor when I found out about this as I have also suffered with severe acid reflux for the last 6 years which started when I was expecting my second child. Apparently there can be a link between Raynauds and several auto immune diseases such as Scleroderma.

So a few weeks back my doctor ordered some blood tests which came back with a ANA titre of 1:640 speckled with a SSA (Ro) positive which apparently is linked to Sjogrens. I also had a positive RA factor and 'Low Positive' C3 and C4 which I think are cardiolipin tests. My liver level was also slightly raised. I was then sent to see a rheumatologist who I feel was hopeless! He told me the 1:640 titre was a low reading. He looked at my skin and said there was no evidence of Scleroderma (even though you can get Sclero without skin symptoms!), he then went onto mention Lupus ans Sjorgrens and asked me if I had dry eyes and mouth. I don't really get dry eyes but they do get tired and recently I had a few days where I though I had conjunctivitis as they felt like they had grit in them. I didn't mention this as I didn't think about it at the time of the appointment. I do get a very dry cough but just put that down to the acid reflux which causes me to cough. I also mentioned my other symptoms which are very stiff upper back and neck (feel like I can't relax my shoulders and have a dull ache between shoulder blades). shortness of breath, coughing on exertion especially when doing cardio in the gym, feeling of weakness in my legs when I climb the stairs in my house (there are only 12!), dizzy spells, words don't come out right, feeling of exhaustion and so on. My main problem though has been the acid reflux which I have had for nearly 7 years and am at the point of getting an op for.

The rheumatologist told me I had a mild heart murmur but said it was "fairly normal" in someone small like me (I am very slight at only 48kgs). He told me not to worry and just make an appointment in May when it gets cold to see how the Raynauds is affecting me! I have since been back to my doctor who has ordered some retests and some others for me to have before I go back to the Rheumi. My doctor said it could be a cross over between Lupus and Sjogrens but she is not sure. i am so confused!!

Has anyone else had similar blood results and a good diagnosis? Can anyone else advise of any other tests I should demand? should I have a test on my lungs as I do get shortness of breath? I forgot to mention that every now and then (at least 4-6 times a month) I get heart palpitations that feel like my heart wants to break through my Chest!

Any advice would be greatly appreciated as I am totally confused as to what is happening and whether the positive tests mean anything.

Many thanks.

TOB

[Victoria05202000]

TOB,

Welcome and we are glad you found us.  Your test results sound like mine about 4 years ago.  They thought it was Lupus and Sjogrens...perhaps Scleroderma because of my kidney involvement.  It just ended up being Sjogrens. I have Raynauds and vasculitis as secondary problems associated with Sjogrens.

We all are affected different ways. At first, I didn't notice any dry eyes or mouth symptoms....and now I do. I occasionally feel like I have a heaviness on my chest...it is hard to breathe. Actually, everything you have mentioned except heart murmur sounds like sjogrens.

With a few more labs and monitoring of you.....your doc should know what treatment will work best for you. There are a lot of options and meds that they can prescribe to help with the discomfort and fatigue.

Take CAre!
Vicky

[jonnell]

TOB   Welcome to the site.  My little girl Jenna has SJS and you have alot of the same symptoms.  I also thought she had Lupus.  She had a positive ANA and Positive for SSA and SSB which I am told can be either SJS or Lupus.  She has almost no saliva production which has make her lose most of her teeth and has acid reflux very bad.  She also has Reactive Airway Disease which causes her to cough with hard play and cold air.  She is constantly getting UTIs and sinus infections.  She also has a very hard time in the summer with the sun and heat.  She gets the butterfly rash accross the nose and under eyes when in the sun or under flouresent lights.  She also has lower back and leg pain and cant walk long distances without pain.  Complains of headaches and stomach aches.  Jenna has a very good Rhumy and that is a big help she is the youngest SJS patient at Dupont Childrens Hospital in Deleware.  You can have a lip biopsy done to confirm SJS but I hear even if that is negative you can still have SJS  thoughts and prayers are with you.      Hugs and Kissess    Jonnell and Jenna

[Linda196]

Hi TOB, welcome to Sjogren's World.

Your symptoms all lean toward SjS, including the reflux, gritty eyes, and (more specifically) the positive anti-SSA. The other symptoms could all be put down to it as well, because, as Vickey said, each of us is affected differently. The ANA of 1:640 is actually considered low positive, but it indicates that something is happening, and needs to be checked out.

Have you been evaluated by a cardiologist for the palpitations? If not, it would probably be a good idea. Dryness in the mouth, throat and lungs can actually contribute to shortness of breath, but it's best to rule out any more serious issues, and a cardio would be a good place to start.

As for tests, if not already done (and they may have been with the anti-SSA) an anti-dsDNA might end confusion regarding lupus vs SjS, and testing for inflammation (ESR and CRP) might indicate the level of involvement or activity of what ever disease it is.

First thing to do is take a deep breath, let it go, and try to relax! At first, all these tests and confusing results can get to you, but if you can deal with things one at a time, research tests, symptoms and treatments that you can find out about as you read posts here, soon things will start to fall into place and make a bit more sense. I'm guessing you're in Australia or New Zealand? Try searching for local Arthritis organizations and Lupus support groups, there's usually lots of information there about all kinds of rheumatological diseases, not just arthritis or Lupus.

[Scottietottie]

Hi TOB 

Welcome to Sjogren's world.  Well it sounds like you have something going on. It can take a while to work out precise dx and some of us never get a precise one. I've been dxd with Lupus/sjogren's overlap. I have lupus bloodwork and SjS symptoms. Treatment seems to be the same for both anyway.

So - did this rheumatologist suggest any medication - because there are meds out there that can help. If your eyes feel gritty it would be a good idea to see an opthamologist as well as a rheumy. They can assess exactly how dry the eyes are and what the best drops for them are and also tell you about eye care that can help.

Take care - Scottie 

[Chickpea]

Hi TOB

Just wanted to say welcome.  I haven't much to add except to say 'get yourself some good doctors'!  Will your GP be a good advocate for you?  It helps if your local doctor learns as much as they can about SjS so they can get you the tests and treatment you need.  Through local support groups, or here if there are people here who live near you, you'll get recommendations for a good rheumy who will get on with treatments sooner rather than later.  Plaquenil in particular is a gold standard treatment for the dryness issues, as well as helping with exhaustion and 'brain fog'.

Heart murmurs often cause no problems, but yours should be investigated now you're getting palpitations and shortness of breath; a heart echo should show where the problem lies.  I have similar symptoms and I have heart murmurs which I've had since I had rheumatic fever when I was 3.  We had a good discussion about heart murmurs recently - you can find it through the search box - and found quite a few people had personal or family connections with rheumatic fever. 

Take care - Chickpea

[Babs659]

I am very surprised your doctor thought 1:640 was low for ANA.  The next dilution is 1:1280, which is what I had.  When I went to the rheumy (and he is the best and most respected and experienced in town) even he said, "wow, that's high!".  And yours was only one step below mine.....

[KYMOM]

Tob, Welcome.  Good luck in your quest for answers. Roxanne

[forest]

Welcome TOB. There is a great bunch of people here at Sjogren's World! I am glad you found it.
I hope you get some answers to your questions. I am struggling to get a solid diagnosis as well.

Take Care
forest

[TOB]

Hi again and thanks to all your replies! It's really nice to know that there are people out there who I can share my thoughts and anxieties with!

Just going back to my blood tests, I have just noticed on my results that I was positive for SSA (Ro60). There is also a SSA (Ro52) listed on the results which I was negative for. Does anyone know the difference between the two types of SSA?

Linda196, thankd for your reply - My anti DNA was 3.4 IU/mL and the test states it should be lower than <7.5 so I take it that was ok. Lupus anticoagulant was negative. Cardiolipins IgG and IgM were both low positive but I am not sure what this test is for, any ideas? 

Regarding Lupus, I don't get a butterfly rash across my face but I do get very itchy skin either side of my nose on my cheeks normally if I have been out in the sun. Does anyone else get this rather than abutterfly rash?

Does anyone else suffer with their upper body feeling like it can't relax? It's hard to explain but I feel like my shoulders are touching my ears as they just don't seem to relax. I find myself waking int he night feeling so stiff and uncomfortable. I lay in bed trying to concentrate pulling my shoulders down and trying to relax my body. I am contemplating asking my doctor if there is anything she can give me to relax my muscles as I am not sure if there is anything.I don't really suffer from joint pain, it's definitely more muscular and in my upper back. having said that the last couple of months I have been experiencing carpal tunnel syndrome and really sore points on my wrists. I went for a massage yesterday and the masseur started pulling his ands down my arms and when he got to my wrist (near the nobbly bit of bone) I nearly flew off the massage table, it was so sore! Has anyone else experienced sor points in their arms or legs?

Sorry for the long email, I am really just trying to understand what's going on and whether it's related to the problem or me just getting old. I will be 38 this weekend so not that old yet

Thanks again to all.
!

[Chickpea]

Hi TOB

Yes, yes, yes to the sore points on arms, legs and just about everywhere.  Yes also to the tight shoulders, but I'd never thought to connect that with SjS.  It will be interesting to hear if other people have it too.

Happy birthday for this weekend.

Take care - Chickpea

[TOB]

Hi chickpea,

Thanks for your reply. I feel for you but am glad to hear that you too suffer with sore spots too and that I am not going mad!. Can I ask you where you get the sore spots? I have them on my wrists, just below my knee ont he inside of my calve and just above my know on the inside of my leg, in my shoulder blads towards the sides of my back in my lower skull where it meets my neck and in other places at different times. could this be fibromyalgia? I understand from reading about this that you get tender spots? Do you know how this is diagnosed?

Going back to the muscle tightness that I feel, i am not sure if this is related to the condition or whether it is where I work on a PC at a desk. One thing I do know is that I cannot seem to illeviate the problem no matter how many massages I have or how much I stretch. It has definitely got worse the last 12 months and Ihave been working on a PC for years.

Thanks again for your reply. I really appreciate the time people take on this site to try to reassure us newbies!

TOB

[Babs659]

I always thought the doctor gave a diagnosis of fibromyalgia if the pain could not be otherwise explained.  I thought that if you have Sjs, there is your explanation for the pain.  Learn something new everyday!

[Issey]

Hi everyone - yes I too get sore points and the shoulder thing:( Its like you are hunching your shoulders?the sore bits can be anywhere shin bones hips - at one time I thought I needed hip and knee replacing - was sent for x-rays and came back OK! obviously some wear and tear (am 59) but this explains all the false results - its not arthritis is SS - just proving it is the hardest bit:(
Issey

[Chickpea]

Hi TOB and everyone

I have a lot of generalised pain in joints and muscles, and then 'sore spots' in different places at different times.  Today's stars are calves, toes, fingers, wrists, upper arms, shoulders. The top prize goes to my right hip, deep inside.  A week ago I walked more than I usually do - max is usually 20 yards with walker or 5 yards with stick - because there was nobody to push my wheelchair for a hospital appointment.  Result was a very sore right hip and leg which is taking time to recover.  I think it's probably because I don't have a good walking rhythm despite relearning to walk with a neuro physio.  Today I'm wearing my leg splints and wrist supports so things are improving a little.

I agree with Babs that this is all SjS, not fibromyalgia.  With SjS you get similar pain and inflammation as with RA, but without the joints getting distorted.  Five years ago one of my unexplained symptoms was severe pain in the muscles of my upper arms.  The only explanation was that it was related to childhood rheumatic fever.  Now I'm sure it was early SjS.

I find acupuncture helps with both pain and tight shoulders, and warm baths are heavenly.  I'd have daily massages if I could afford them!  I take a lot of pain meds but nothing that makes a real difference.

Anyone discovered something that helps?

Take care - Chickpea