ANA is negative,please help
Posted 30 May 2008 - 05:52 PM
About a year ago I was healthy until I started getting short of breath on exertion and coughing bouts of yellow mucoid phlegm.I went to see a pulmonologist and was diagnosed with chronic interstitial lung disease.I had a lung biopsy done and it revealed organizing pneumonitis with mild fibrosis at both bases of the lungs.
About two months afterwards I starting getting a lot of pain in my both my hands and also both feet.The pain has persisted since last year and is only getting worse now.It doesn't even go away with the high dose steroids.I actually startred getting the pain before being put on steroids so I can safely say that its not a steroid induced type of myopathy.
It can be described as a constant symmetrical burning pain in both my palms,soles,fingers and toes.It seems to get worse with movement like walking and worse in the morning as soon as I wake up.I wear slippers now whenever I walk because if I put on my shoes my feet ache alot as if the shoes are too tight.
Along with the pain I get alot of systemic effects lie weakness and feeling tired easily after an easy task.Also,lots of intrathoracic chest pain felt laterally on both sides of my lungs.Again burning in nature as if it was coming from my under my armpits on both sides of the body.
The skin on the lateral aspects of all my fingers look completely different.They are hard and feel very velvety in nature.Also the very next finger after my thumb is crooked at the distal interphalangeal joint.It happened to the same finger on the other hand as well.The nailfolds proximal to my nails feel very spongy,but this can be due to digital clubbing,a common phenomenon of severe lung disease.
Just about a month ago my palms were starting getting very edematous,especially on palmar aspect of the knuckles.The main symptom I seem to feel is that my palms get shiny from time to time when they ache,but then later the shininess goes away.It looks like as if they are sweating,but is not actually sweating.When I touch them it feels waxy instead and oily,but I don't see any sweat.That shininess goes away after a while.
Also if I hold an object for a long time and let go my palms remain red and don't seem to blanch.They stay red for a while then turn to normal color later.Holding such objects like a cell phone while talking or the steering wheel while driving for long periods.And just recently I'm getting a funny feeling in the skin covering the palmar side both my elbows and behind both my knees.I think they're called the tendinous sheath's.They feel very moist and tingly.It feels as if the skin covering those joints are starting to inflame.
At that point my pulmnologist was concerned it may be related to a connective tissue disorder and so I was referred to a rheumatologist.He ordered a bunch of tests such as the ANA,ESR and rheumatoid factor.All were negative.
He didn't believe it was a scleroderma because the ANA was negative and also because he the high doses of steroids(60mg) I was on to treat the lung condition should've got rid of the joint pain as well if it was scleroderma. He said the type of pain in connective tissue disorders such as scleroderma and rheumatoid arthritis are considered to be inflammatory and respond well to steroids.In my case he believes the pain I'm experiencing is noninflammatory because it didn't not respond to steroids and therefore eliminated the possibility of a connective tissue disorder.
He believes its all related to the lungs,possibly secondary hypertrophic osteoartharopathy.My pulmonlogists things otherwise and believes the the lung issue is secondary to rhematic process,possibly being the first manifestation of a connective tissue disorder.
So my question is what am I suppose to believe? I read in these forums that the ANA can be negative early in the disease and is not really specific.The scl-70 is more specific for diffuse systemic sclerosis if thats what I have considering the involvement of the lungs.
But if it is systemic sclerosis why was my lung condition the first symptom before the joint pain? I read elsewhere that lung involvement occurs usually later in the course of systemic sclerosis.However the radiological appearance of my lungs are consistent with systemic sclerosis since both bases of the lungs are mildly fibrotic and also the fact that I'm am having an active sort of alveolitis up to now.The pulmonary function testing revealed a mild restrictive procees and mild reduction in the DLCO gas exchange,consistent with systemic sclerosis
How do I explain the articular symptoms?I read elsewhere that a chronic myopathy may develop after lung manifestations in systemic sclerosis and is usually unresponsive to steroids.
How do I explain the skin changes on the lateral aspects of my hands and tendon sheaths of elbows and behind knees?
And how about the shininess in the hands? If it was scleroderma then shouldn't the skin on the hands remain shiny instead of going away and coming back the next day? But then again it could indeed be secondary hypertrophic osteoartharopathy because these skin changes in color and shininess along with the pain can just be some sort of autonomic nervous system disturbance seen in the disorder.It is commonly related to chronic interstital lung disease.It is also common for the pain to be unresponsive to steroids in the secondary hypertrophic osteoartharopathy.
And how about the swelling in my palms? I read that in early systemic sclerosis the palms may appear very edematous before the sclerotic phase.And how about the systemic effects like fatigue and tired and feeling ill all the time? It could be consistent with an autoimmune disorder like scleroderma.
Is there anyone here that had similar symptoms to mine.I get I'm looking for some self assurance that it may be scleroderma.I just want to get this over with.I want to be diagnosed so I can treat this properly if indeed it is systemic sclerosis.Can anyone please share some insight or give me some advice what to do? Thank you.
Posted 30 May 2008 - 06:25 PM
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Posted 30 May 2008 - 06:46 PM
I agree with Sheryl in that a scleroderma specialist would be a good idea. Have you had an scl-70 test?
I understand your fears and wanting to have a definite diagnosis. I went for 6 years with a "probable lupus" diagnosis and went for many years before that thinking I was just a whiner or a hypochondriac.
Once a diagnosis is made then you can feel sort of vindicated and move on to pursuing proper treatment. Some go for many years without a definitive diagnosis. I know it can be so frustrating.
Sounds like you are keeping yourself well informed and that is good! It is also good you found ISN, home of the most supportive and informative and compassionate people in the world.
Keep your chin up and keep reading and posting!
Posted 30 May 2008 - 10:28 PM
I am male too, I am 38 and live in Munich Germany. I am also ANA negative and also suspect diffuse SSc as most likely source of all my problems. (in my case lung is not involved so far, but GI system is). As I am not a native speaker please appologize, if I do not have the full capability describing in all detail and nuances (but as I lived in Ca for 7 years it should do). I do not have Raynaud (but blood circulation problems and cold hands with emotions or cold sometimes that slightly hurts, but is definitely not Raynaud...at least not yet)
What you describe about your hands is pretty close to what I have there.
(maybe you go to my ealier posts and see for yourself).
My symptoms started with a differenc in blood circulation...my hands got red and while speckeld with emotional stress about a year ago...after about another 2 month my palms started to get slightly swollen (the pads below where the fingers start) and they sometimes hurt when holding the steering wheel. The texture of the steering wheel cover was visible for a long time after leting go...and if I put the elbow of one hand on the area between thumb and index finger (outside of the hand) then the sweater imprint (woolen) was visible very long....thats where I started to hunt for what this is...
When typing on a laptop (which was hot) the insides of my hands got very red and shinny for a long time. The imprint of the trackpad of my IBM was visible for very long as well and very deep.
Then the skin started to pull on the insides of the fingers and hands and palm. About another month later (3 -4 month from start) the fingers became swollen (ring did not fit in the morning very well and if I left it on, there was an imprint of the ring on my skin which I never had before because of my wedding band...(I had it 15 years).
The palm and fingers started to burn at night and sometimes tingle or fall "asleep" (I do not know if you use that expression in English..hope you know what I mean).
The burning got a bit less, but the skin became shinny on the insides of the fingers and more strertched...the creases (inside) which produce the finger print went away, and there are now crease in the direction of the finger rather than across the finger (from all the pulling). The swelling has increased (the skin between the fingers...the part ducks use to paddle) has become thicker especially in the morning, the rind doesn't go over anymore unless with force and damage (interestingly as I keep trying if it fits, the knuckle of this finger is the thickes skin ...accidentaly?).
The skin is shiny now on the inside and the top most part of the fingers sclaes as it is really dry...when making a fist, I can feel the skin on the inside (or the swelling) and it feels stiff (but I can still make a nice fist, but if really swollen it hurts). The finger tips hurt sometimes when typing. The feeling on the fnger tips is like if I have superglue on them (all over the area). It is most pronounced on the index finger and thumb (also covers not just the tip there but the whole finger)...other fingers seem to follow. (happened about a month ago). (it is now about 1 year from start).
My other problems are mainly tendon problems especially in the spine area...I have some crackling and it stops my movement and if I use force, the I almost rip the tendon loose and here a cracking noise and it certainly hurts, but afterwards I can again move better....almost like ripping loose the sticky tendon from its sheat.
GI problems...almost diarhoe like..but then its not.
Vision problems (alsmost like cartaract like, but its not)...only small area on screen is visible in full sharpness.
And I can feel the skin in my face (my mouth is smaller and if I try to make the same wide mouth like I had before and grin, then the checks look swollen and I feel the skin...similar thing happend on my forehead...looks like I am constantly grumpy now...and if I try to move the expression to the previous, then I can feel the skin on my forehead almost like it is refusing (or dry...it is dry).
If I go in the sauna my lips are blue speckled after showering cold (my hands are OK).
And I can feel the skin on my feet (lower side). What else? Ah, nails...they look like they get constantly shorter and they bend like claws if I let them grow a bit longer (even if clipped they already look like half claws..definitly bend down toward the end which they never did before) and I sometimes get some small bleedings below the nails (towards the top of the finger).
Now: can you the signs (obviously you also have read a lot...)...I can....so far my doctors also all tell me that there is no ANAs, no ENAs (at least the ones they tested...the most common ones)....but then I read on many sites, that only in about 85-90% of the SSc cases there are ANAs and ENAs are even less common. And if I talk to people that really have it...then you get the answer from many that they do not have it even after years.....so....
And not having Raynauds in diffuse SSc is also not so uncommon - especially as male. (40-20% do not have it with the diffuse form...only the limited seems to have it with 98% years in advance...but for diffuse its also quite normal to have it later or not at all and being male even less so).
Now how can any doctor say due to just looking at not having Raynauds and not having ANAs that you do not have SSc if all other symptoms point to it? Interesting question. Me as engineer would say that is impossible...
Ah forgot...I also have Sicca...constantly need chewing gum to keep my mouth remotely wet. (even at night...peppermint chewing gum without suggar...does the job).
So all signs for SSc I would say (I am also tired often without reason..and I was quite energetic before) and sometimes some muscles hurt without reason.
I have an appointment with a specialized diagnostic clinic in 2 month...I shall see...(almost like a Mayo clinic) and at least they say, that they like "complicated cases". I will let you know.
Posted 31 May 2008 - 02:15 PM
Keep going to a doctor until you find out as you need to be pro-active with meds if you do in fact have it.
Good luck and warm hugs,
Posted 01 June 2008 - 04:49 AM
I would keep trying to get another Rheumatologist for a second opinion, preferably one that specializes in Scleroderma. Hopefully, you can do that?
This is a good site for information to help you. Keep asking your questions.
Posted 01 June 2008 - 08:14 AM
I think you guys are absolutely right.My best bet is to make an appointment with another rheumatologist and get a second opinion.I found one off the internet that specializes in scleroderma near where I live.
Just today I got another symptom.I'm having bilateral bony pain of the mandible.Its kind of at the angle where the mandible meets the ramus (gonial angle).It can be felt at both sides of my head.I know its not the lymph nodes.I can palpate the bone at that region and feel pain.If I palpate it often enough at one time I can feel constant pain and somewhat difficulty closing and opening the jaw afterwards.
Just thought I mention it to see if anyone here has a similar symptom.Wow,my hands are just getting stiiff and painful just typing so little.
Posted 01 June 2008 - 08:37 AM
Ditto to the advice of seeing a specialist or at the very least, another rheumatologist. You have a lot going on that could be attributed to many things; however, with your pulmonologist continuing to attribute your symptoms to CTD, I would think that something more than a negative ANA would be needed to rule it out. I'm certainly no doctor, but rheumatic diseases are very hard to diagnose and one little ANA test shouldn't make or break a diagnosis. You might ask your next doctor about doing a capillaroscopy. It's a simply non-invasive test that can be done in a doctor's office. Click on the link I provided to learn more about it.
Welcome! Please keep us informed of you appointments and results. Your experiences always helps others and vice versa.
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Posted 01 June 2008 - 01:17 PM
Welcome to the Sclero Forums. I'm a little late in jumping in here but didn't want to pass up saying welcome. Janey and the others gave you some great advice. I truly hope it is helpful for you. You are dealing with a lot. Please know we are here for you.
Posted 02 June 2008 - 02:27 AM
I'm putting this message here because I have some similar type issues. My ANA is positive, but the other tests that the doctor had ordered came back negative. Negative SSA, SSB, Scl-70, Centromere, SED rate. So, the doctor has concluded that I don't have scleroderma.
I have: swollen hands and fingers in the morning, so bad that I sometimes wake up in the night from the pain in my hands. The skin on the ends of the fingers is getting shiny in the morning, but leathery later. I'm having GERD, trouble swallowing, and I have Reynaud's. I have sicca syndrome, not officially diagnosed as Sjogren's but dry eyes, dry mouth, burning mouth, dry everything else... The wrinkle across the top of my forehead is smoothing out. The parenthesis around my mouth seem to be less pronounced. My lips are tighter, I'm getting some furrowing around the top lip. It seems like I can't say certain things well either tongue or lips not going where they should. I have heart arrhythmia, slight breathlessness that isn't a huge deal at this time. Slightly higher blood pressure lately.
Anyway... I got in to see a second rheumatologist, but I'm not sure if she is normally a Sclero expert. Her expertise is Lupus. She couldn't run any tests per my insurance, so she could only look at what had already been done. She did a thorough exam. She didn't think I had any skin thickening yet. She said I definitely have Reynaud's, I probably have Sjogren's and suggested getting the lip biopsy. She more or less agreed with the other rheumatologist.
From what I've been reading here, it could be that I have the beginnings of problems that could lead to scleroderma some time in the future. The second doctor even said that while I have some symptoms of scleroderma, I didn't have it now according to the tests, that doesn't mean that some time in the future I wouldn't end up with it. She would have liked to have run other tests, but didn't mention what they were.
So at this time. I officially don't have scleroderma, I have some symptoms that are related to scleroderma. I am suppose to keep an eye on my problems and I'll probably have to get re-checked in the future. I cancelled an appointment with a dermatologist because I am going to put this to rest for now.
At this time, I've decided that I'm going to do just that. I want to take pictures of my face as it is right now, and keep a visual diary of my face to see if there are any changes. I'm going to do the same with my hands. I'm not going to get the lip biopsy at this time because my current life insurance actually has a rider against Sjogren's. I'm taking a daily baby asprin as the first rheumatologist suggested. I'm taking Zantac and I will take Prilosec as needed too. I'll use my Restasis eye drops. I'll be diligent with my dental cleaning. And I'm going to stop worrying about this for now.
I would like to know what some of you may think about this, so please respond or send me an email. I'll be checking back once in a while, but I'm going to try to take my mind off this issue for a while. If I do have scleroderma and I just don't have it bad enough for the doctors to make that determination, I'm going to do as they suggested, and see what comes next without making a big deal about it.
My heart goes out to you all with an actual diagnosis, and for those of you in my boat that don't really know what is going on, I wish you the best. You are a great group of people. Keep up the good work.
Posted 02 June 2008 - 02:49 AM
I know how very frustrating it can be to get a proper diagnosis. It takes an average of about 3 years for men to be diagnosed with scleroderma, and 6 years for women. Although these are dire statistics, I suspect even those figures are quite optimistic! And there's no telling how many doctors a patient has consulted during that time, trying to find solid or fitting answers.
We have a page on Difficult Diagnosis that strives to address this problem. Also, our Sclero Forums serves those with scleroderma and related illnesses (or symptoms) such as Raynaud's, Sjogren's, etc. ad infinitum.
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Posted 03 June 2008 - 04:14 PM
I was diagnosed with systemic sclerosis in July of 2006. I was lucky, in that I was diagnosed within a relatively short period of time. It only took me about 6 months to finally receive the diagnosis. The key was getting to a specialist. I was very lucky to have a family physician sharp enough to suspect the disease, who referred me to a rheumatologist who was sharp enough to know his limitations and sent me to somebody who specialized in Scleroderma. I had to travel across many state lines to see him but it was worth it. I was given the diagnosis despite never having a positive ANA. To this day, I have never had a positive result. The experts will tell you that the diagnosis is mainly based upon your clinical presentation and symptoms. Frankly, my symptoms were quite dissimilar to yours. Rather than lung symptoms(although they came later), my symptoms began with alot of reflux, joint and muscle pain and extreme fatigue issues. I also had skin tightening and discoloration, but different than you have described. Interestingly, Raynauds came much later for me(for many it is the first symptom) and my lung involvement also came later. Thankfully, my lung involvement has remained at a minimum and my PFT's actually show some slight improvement. Bottom line is that I agree with everyone else. Get to a Scleroderma specialist to be checked out. The sooner the better. Scleroderma can be alot worse in men and if it is systemic, getting to it early allows for many treatment options that might not otherwise be available.
Posted 06 June 2008 - 02:35 AM
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