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    Old 06-26-2013, 06:29 AM   #1
    Calamity77
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    Undiagnosed Auto-immune

    I have had a ton of health problems over past 2 years for unexplained reason: tendonitis, herniated discs, radiculopathy, torn hip labrum, plantar plate tear, inflammed bursa in my foot, anaphylaxis reaction to a oral drug that I have taken before, heart problems, chronic fatigue symptoms. Many of these issues are being managed today be different specialist and I go through flares of debilitatation because of the various symptoms. But what has been consistent all the way through is a positive ANA of 320.

    Rheumatologist is at a loss to connect the ANA to any particular auto-immune condition. However, I saw a podiatrist today who took one look at my medical history (I am 43) and asked me if i had auto-immune issues. She believes that many rheumatologist only identify with text-book cases and she thinks that auto-immune (like the autism spectrum) can be much more generalised. ie positive ANA indicates an auto-immune reaction in the body and you don't necessarily have to have a specific disease.

    I see a lot of people writing about a huge range of symptoms together with some auto-immune blood work testing positive, yet they are unable to get firm diagnosis. Perhaps the diagnosis is not yet even known about in the medical literature and perhaps we are sufferers of a more generalised auto-immune abnormality that doesn't actually have a name yet !

     
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    Old 06-26-2013, 08:48 AM   #2
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    Re: Undiagnosed Auto-immune

    I would see a different rheum! An ANA of 320, plus certain symptoms should point to lupus, depending on what symptoms are present and what other labs are normal/abnormal. Could you go through your previous labs and pick out any others that are abnormal or borderline hi/lo? I would look over the sticky notes on the lupus board here, and review common symptoms of lupus, and see how many fit. Make a list of those, take your lab results, and run to a different rheum. who will give your case a new look and may be more knowlegeable or assertive at diagnosing. Feel free to post any other labs/symptoms for feedback.

     
    Old 06-26-2013, 10:23 AM   #3
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    Re: Undiagnosed Auto-immune

    Hi. I'm sorry you're struggling. I react the same: I'd want copies of whatever the rheumatologist HAS run, to see which autoantibodies he's tested for.

    Problem with labs is that results can look "normal" if the most appropriate ones haven't been run... or weren't run at the "right time". Timing can count: some antibodies rise & fall, so results can sometimes be more "telling" if blood is drawn when a flare is "on the rise".

    Here are examples, from my own family, of such things going amok. My sis's doctor said her labs were normal, but he'd never tested her thyroid levels. BY THE WAY, you should have your thyroid levels checked, if you haven't already, because autoimmune thyroid disorders can cause a positive ANA, fatigue, joint pain, etc.---and your rhematologist may not have included any thyroid tests.

    And my doctors didn't run anti-Ro tests for quite a few years... Anyway, I really hope you can move this along & get some answers and help. Best wishes, Vee

     
    Old 06-30-2013, 04:20 AM   #4
    Calamity77
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    Re: Undiagnosed Auto-immune

    Thanks for your comments. I have been looking back over things. Here is what I have for the past 2 years through blood work, ultrasounds and MRI

    1) Dec 2011 ANA 160 rising to 320 in mid 2012
    2) Jan 2012 Rheumatoid Factor 28 (mild elevation). it has shown normal in subsequent bloodwork
    3) Jan 2012 - C-Reactive Protein 12. it has been intermittently up and normal in subsequent bloodwork.
    4) Dec 2011 - Lumbar Spine CT - L4/5 Moderate disc bulge with minor soft tissue canal stenosis. L3/4 Mild disc bulge
    5) May 2012 - Left foot ultrasound. inflammed bursa's at 2nd and 3rd intertarsal spaces
    6) May 2012 - Right foot ultrasound. - inflammed bursa between 2nd/3rd metatarsal heads
    7) May 2012 - Right ankle ultrasound - soft tissue thickening inferior to the fibula and lateral subtalar joint with bony irregularity/fragmentation at the malleolar margin.
    8) May 2013 - MRI Right hip - small hip joint effusion and anterosuperior acetabular labral tear
    9) May 2013 - MRI Lumbar Spine - L4/5 diffuse disc bulge displacing exiting L4 right nerve root. L3/4 Diffuse disc bulge causing focal mass effect on the exiting right L3 nerve root
    10) June 2013 - Ultrasound right foot - Extensive plantar plate tear and small inflammed bursa

    My current symptoms are pain from the right foot, groin, hip and down the right leg. I also have neck pain (not too severe) but have been unable to get full movement in my neck to the right for past 5 weeks. Pain in my left and right wrists/fingers. Rheumatologist has told me osteo-arthritis (but no proof of this). 12 months ago I suffered a systemic shut-down from anaphylaxis to an oral antiobiotic that I had previously taken without any problems. Previously no known allergies. During that hospital admission I was also diagnosed with atrial fibrilation. Intermittently I get skin problems on my fingers. Hard crusty areas that split and peel. The rheumatologist does not think this is typical of skin rashes relating to auto-immune conditions he has seen before.

     
    Old 06-30-2013, 05:46 AM   #5
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    Re: Undiagnosed Auto-immune

    Hi, Calamity. Based on the labs & test results you just posted, here are more things I'd want to know, if I were you.

    1. re INFLAMED BURSAE. Did your doctors call this "bursitis"? Apparently bursitis can be caused by simple overuse or trauma, but also by conditions like GOUT and RHEUMATOID ARTHRITIS.

    2. The last lab date for rheumatology labs you mention is January 2012, almost 1-1/2 years ago. Is it time to run new ones (full, meaning comprehensive)?

    3. re RA tests. RF and CRP (C-reactive protein) are several key tests done, but there's another extremely useful one called CCP (anti-cyclic citrullinated protein) that typically elevates in RA. Was this CCP test ever done? FYI, CCP may be negative in 50% of those with *early* RA.

    4. re RF (rheumatoid factor). You said it was elevated then turned normal again. Because it can elevate in RA, I'd want the RA tests done again. And because RF can also elevate in LUPUS, I'd want tested for lupus, too. That would involve tests for autoantibodies seen in lupus, which you could find in the sticky posts on the lupus board. (For example, anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, plus even more.)

    5. re ANA & what it can mean. About 1/3 of people with RA have a positive ANA; but in systemic lupus, that number is something like 95% to 98%.
    But ANA can elevate in other autoimmunes. And it can also elevate due to VIRUS or INFECTION, thus some well-known RA specialists try to immediately rule out certain viruses (parvo B19, HepB, HepC, and Lyme)---also gout. This approach makes a lot of sense to me! Were these things ever tested for?

    6. re CRUSTY SKIN on fingers. I'm no doctor, but I've had 2 or 3 different lupus rashes & have read about the others. With what I know about these rashes, this didn't sound like a lupus rash to me. Whether it could be some other AI rash, I don't know (sorry).

    What it kind of reminds me of is the contact dermatitis I used to get often. Mine skin turned brown-ish, and was wildly itchy, crusty, and weepy. Steroid cream or shots helped. Now I always wear gloves when I clean, as I believe household cleaners were the likely cause for me.

    If your doctors didn't cover these bases for RA, lupus, various virusus and infections, gout, and thyroid, too... well, in your shoes, I'd consider trying new ones. Your podiatrst sounds pretty sharp: maybe she could recommend some names? Keep us posted, OK? Sending best wishes, Vee

     
    Old 06-30-2013, 01:59 PM   #6
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    Re: Undiagnosed Auto-immune

    Calamity,
    I agree with everything Vee posted, and would reiterate especially getting the CCP, anti-DS DNA, anti-Smith, Anti-Ro and LA, RNP. I would also check your previous bloodwork for thyroid, CBC, kidney and urine abnormailties. I would put Lupus and RA at the top of list (people can have both, like myself), and possibly mixed connective tissue disease, which is a combination of lupus and other autoimmune disorders. The skin on your fingers could be from Raynaud's and poor circulation. Do you get Raynauds? Color changes in the fingers (blue, purple, red or dead white) are common in many autoimmune diseases and can affect the skin of fingertips. It is particular severe in scleroderma, so I would also want a anti SCL-70 antibody for scleroderma, and RNP for mixed connective tissue disease. Osteoarthritis affects the joints closest to fingertips in hands. RA and lupus affects the Knuckles of the hand, both MCP and PIP joints. Redness and swelling may occur in the joints too, but not in osteo. Most of the arthritic autoimmune disease are treated similarly, so your Dr could (should) at least start you on the basics- Placquenil, NSAIDS, and possibly later on methotrexate. Your back situation might be helped by epidural steroid injections at the sites where the discs are bulging and pressing on the nerves. All the bursitis, hip effusion, etc are part of this autoimmune disease, which your rheum seems to be sorely lacking in identifying and treating you to make you more comfortable but more importantly, stop further joint damage. I would be careful to wear very cushiony shoes that have good arch and metatarsal (ball of foot) support or arch supports for the same purpose. I have liked Dr Scholl's purple one for ladies, as I have foot problems also from RA. I hope you find a more aggressive, competent rheum that will take this seriously and get you diagnosed and on treatment!

     
    Old 07-01-2013, 03:06 AM   #7
    Calamity77
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    Re: Undiagnosed Auto-immune

    Quote:
    Originally Posted by ladybud View Post
    Calamity,
    Your back situation might be helped by epidural steroid injections at the sites where the discs are bulging and pressing on the nerves. All the bursitis, hip effusion, etc are part of this autoimmune disease, which your rheum seems to be sorely lacking in identifying and treating you to make you more comfortable but more importantly, stop further joint damage.
    Thanks everyone for your comments. I couldn't agree more with the above quote. I have had the back injected with some success, but it is not fully resolved and significantly restricts my mobility. The docs keep looking at all these issues as separate. I mean, how unlucky can one person be to have all these separate issues at one time ! Commonsense tells me there must be some link. I am going to pursue getting more of my blood results like you suggested and find out what has/hasn't been tested.

     
    Old 07-01-2013, 06:00 AM   #8
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    Re: Undiagnosed Auto-immune

    Hi. I think it's possible to have bulging discs unrelated to an autoimmune.
    For instance: spinal stenosis, which you cited in your first post, is infamous for lumbar pain, bulging discs, neuropathy, etc., but I don't believe it's autoimmune.

    In lupus, the upper cervical spine is the only area with enough synovial fluid to inflame substantially (per a lupus book I keep handy). But I don't know how RA and other AI's affect the lumbar spine---so I hope someone adds more. (I will, too, if I see anything that looks useful.)

    Yes, it would be horrible luck to have both some as-yet-diagnosed AI and spinal stenosis. I sure hope you find out more soon. Sympathetically, Vee

     
    Old 07-08-2013, 08:25 AM   #9
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    Re: Undiagnosed Auto-immune

    Hi All. An update.... I visited with orthopaedic surgeon today who was brilliant. He took a very comprehensive history and firmly believes that my multiple issues are caused by an inflammatory tissue disease. He has assessed the plantar plate tear in my foot and has also found other soft tissues problems in other areas of my foot. All of which make it extremely difficult to weight bear on the right foot. He has also explained that my ankle ultrasound is also consistent with an inflammatory process. He is recommending surgery on the foot to fix the tear/toes but is concerned that the outcomes will not be great if we don't get the underlying issue under control.

    I am going to go back to my rheumatologist with the above information. For my spinal/nerve compression issues I need to go back to the neurosurgeon. I had one of the discs/nerves injected a month ago. I have got back the feeling in the lower half of my leg and knee reflex has returned. However the pain is worsening again and I have now had neck pain for 6 weeks. It's not particularly bad pain but I have only limited movement of my neck to the right. It literally will not move any further. Yesterday I had to suddenly move my hand to avoid burning myself on something and this jerking movement further injured my neck so that it is now even more restricted. Feels at the moment that the slightest thing can cause me further damage in one form or another.

     
    Old 07-08-2013, 08:26 AM   #10
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    Re: Undiagnosed Auto-immune

    Hi All. An update.... I visited with orthopaedic surgeon today who was brilliant. He took a very comprehensive history and firmly believes that my multiple issues are caused by an inflammatory tissue disease. He has assessed the plantar plate tear in my foot and has also found other soft tissues problems in other areas of my foot. All of which make it extremely difficult to weight bear on the right foot. He has also explained that my ankle ultrasound is also consistent with an inflammatory process. He is recommending surgery on the foot to fix the tear/toes but is concerned that the outcomes will not be great if we don't get the underlying issue under control.

    I am going to go back to my rheumatologist with the above information. For my spinal/nerve compression issues I need to go back to the neurosurgeon. I had one of the discs/nerves injected a month ago. I have got back the feeling in the lower half of my leg and knee reflex has returned. However the pain is worsening again and I have now had neck pain for 6 weeks. It's not particularly bad pain but I have only limited movement of my neck to the right. It literally will not move any further. Yesterday I had to suddenly move my hand to avoid burning myself on something and this jerking movement further injured my neck so that it is now even more restricted. Feels at the moment that the slightest thing can cause me further damage in one form or another.

     
    Old 07-08-2013, 08:36 AM   #11
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    Re: Undiagnosed Auto-immune

    Calamity, Good to hear positive things from you! I hope your orthopedic surgeon is sending a report to your rheum. I would get a copy of the consultation report from ortho to take with you in case you see a new rheum, and for general documentation that all these problems are related to an underlying disorder. If you were self referred to ortho, you might have to call and ask for a consult report to be sent out. Good luck! This should be a catalyst to get you the help you need.

     
    Old 07-15-2013, 06:06 PM   #12
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    Re: Undiagnosed Auto-immune

    Did they look at connective tissue disease?

     
    Old 07-15-2013, 07:33 PM   #13
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    Re: Undiagnosed Auto-immune

    The term connective tissue disease is synonymous with certain of the inflammatory autoimmune diseases, like lupus, RA, Sjogren's, scleroderma. Not all autoimmune diseases are connective tissue diseases, but most connective tissue diseases are autoimmune. The terms are often used interchangeably when talking about the arthritis related AI diseases.

     
    Old 07-25-2013, 04:54 AM   #14
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    Re: Undiagnosed Auto-immune

    Hi. Just thought I would provide an update. Radiculopathy and plantar plate tear are still a problem, but I have been on methotrexate for a few weeks now. One of the most significant improvement has been to my hands. I have had no pain. Joints are not painful anymore and despite still using them just as much I am not having an pain in my finger joints. Similarly, in the mornings there is no stiffness or pain. I have also in the last few days found my neck has loosened up and I can once again get more mobility. The rheumatologist was doubtful that the medicine was going to have any effect but he was prepared to give it a try. So, still don't really have a diagnosis. I am wondering what sort of auto immune disease could cause the pain in my hands and the stiffness in my neck. I mean, I guess it could just be coincidence that these things have spontaneously resolved but I am hopeful that the medicine is actually making a difference.

     
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    Old 07-25-2013, 06:55 AM   #15
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    Re: Undiagnosed Auto-immune

    Calamity, so glad to hear you are doing better! The MTX seems to be working well-no coincidence. Did you ever get repeat labs done? Without those or xrays showing erosions, you will remain undiagnosed, at least by this rheum. I think lupus and/or RA is most likely and both can cause the neck and hand pain and stiffness. Both are treated with MTX as well. Thanks for the update. It is nice to hear when people are making progress and getting better!

     
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