It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Autoimmune Disorders Message Board

  • Undiagnosed Auto-immune

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 07-26-2013, 01:41 AM   #16
    Calamity77
    Member
    (female)
     
    Calamity77's Avatar
     
    Join Date: Mar 2012
    Location: South Australia
    Posts: 91
    Calamity77 HB User
    Re: Undiagnosed Auto-immune

    Quote:
    Originally Posted by ladybud View Post
    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!
    Thanks Ladybug and to everyone that has posted replies. It is very much appreciated to get some feedback and the support is great. Repeat labs have not shown anything different to the usual ANA of 320 and elevated CRP. I am having second opinion in September and in fact my current Rheum suggested I get second opinion. With that issue somewhat under control I now need to concentrate on the problem with my herniated spinal discs and the resulting radiculopathy. Back to neurosurgeon in a couple of weeks. Thanks again

     
    Sponsors Lightbulb
       
    Old 07-26-2013, 02:39 AM   #17
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,100
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: Undiagnosed Auto-immune

    In spite of what the literature and most Drs say, I truly think that spinal disc deterioration is part of this disease. It makes sense, since the ligaments, tendons, and disc capsule in spine are all connective tissues. I have had 3 lumbar surgeries and one neck surgery for disc deterioration, and many of my fellow lupies have had similar problems. I think the association exists, it just hasn't been recognized or proven yet. The disc material capsule weakens, tears or herniates, the ligaments get lax, just like they do in other joints, causing the vertebrae to slip out of alignment (spondylolisthesis). So I think it is all part and parcel of the autoimmune connective tissue disease. I hope you get your back fixed and get a diagnosis from your second rheum.

     
    Old 08-09-2013, 03:54 AM   #18
    Calamity77
    Member
    (female)
     
    Calamity77's Avatar
     
    Join Date: Mar 2012
    Location: South Australia
    Posts: 91
    Calamity77 HB User
    Re: Undiagnosed Auto-immune

    Ladybug. You mentioned you had lupus. i am interested in finding out more about this disease (not necessarily form the docs but from people that are really suffering the symptoms). Now my neurosurgeon is delaying surgery on my spine in order to do further investigations. The spinal disc herniations are impingeing on nerves, but the nerve pain has become more widespread and he thinks there is something else going on. So he has ordered full spinal and pelvic MRI and X-Rays. I am scared about what they might find. Or perhaps even scared of what they won't find. I was reading that lupus can affect nerves. Is this true. I was starting to wonder if the nerve pain is actually a neuropathy. I have read that there can be an auto-immune reason for neuropathies. Just totally confused at the moment with all the myriad of medical info and the doctors constantly telling me that there is something else going on but they are not sure what. Something i haven't yet investigated is the weakness i experience in my wrists. It has been an intermittement issue for 18 months but now i wake everyday with weak wrists. I have to use two hands to life the milk bottle and lift breakfast bowls as the wrists give way. Improves during the day and then can get worse in the evening (probably because of use during the day). It is painful when the wrist give-way, but not normally at any other time.

     
    Old 08-09-2013, 07:06 AM   #19
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,100
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: Undiagnosed Auto-immune

    Calamity, autoimmune diseases like lupus can definitely cause neuropathies, particularly peripheral neuropathy. It is possible your wrists are affected by carpal tunnel syndrome, a pressure on the median nerve that runs through the wrist into the hand. It can swell from inflammation associated with arthritis, and is common in lupus and rheumatoid arthritis. Also, Vitamin B12 deficiency is common in lupus, which is a cause of peripheral neuropathy. Have you had blood tests for lupus and RA yet? These are simple to do and results are back within 1-2 days. Vitamin B12 level can be checked at same time. I would simply ask for these tests to be done. You have been dealing with all this a long time! No need for further delay. Hypothyroidism can cause peripheral neuropathy too, so that should be checked too (blood tests).

     
    Old 08-09-2013, 07:14 AM   #20
    ladybud
    Senior Veteran
    (female)
     
    ladybud's Avatar
     
    Join Date: Jun 2012
    Location: Colorado
    Posts: 6,100
    ladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB Userladybud HB User
    Re: Undiagnosed Auto-immune

    Sorry, I forgot you DO have a positive ANA at a significant level (lupus test) and high CRP. Why is this being ignored? It seems obvious to me that this is the problem. I would, however, ask for Vit B12 and folate levels to be done, as these can be easily supplemented and can help the neuropathy symptoms. You need to be on meds for lupus, in my opinion, which will control the inflammation, help your pain, reduce the carpal tunnel swelling pressing on the nerves in wrists, and treat the underlying condition. I don't understand why your Drs think this is such a mystery. It seems quite obvious.

     
    The following user gives a hug of support to ladybud:
    Rosi995 (08-14-2013)
    Old 08-09-2013, 06:54 PM   #21
    Calamity77
    Member
    (female)
     
    Calamity77's Avatar
     
    Join Date: Mar 2012
    Location: South Australia
    Posts: 91
    Calamity77 HB User
    Re: Undiagnosed Auto-immune

    Thanks for your comments. Thyroid tests are normal. I am on methotrexate now (5 weeks) which has really helped my hands and I think my neck. The rheumatologist is not committing to a diagnosis one way or the other. Premdominantly, I think, because my presentation is not 'typical'. I do not have any skin rashes or the butterfly rash. Although I do get a heat rash on my chest, but this is something I have had since i was a teenager. I honestly never thought to mention it to him. The orthopaedic surgeon is, on the other hand, convinced that I have a tissue inflammatory disease and is delaying the surgery on my plantar plate tear (foot) until the auto-immune drugs have kicked in more. The neurosurgeon I am seeing for disc herniation causing radiculopathy also thinks there is something more going on because the nerve pain in my lower limbs has become more widespread. So he is ordering full spinal MRI and X-ray. I am on folate already which has been prescribed in conjunction with the methotrexate. Re-doing bloods in a week or two as part of the routine check and my GP has added another test onto the request which identifies the gene (i think it is) for spondyliatis. She is, unlike my rheumatologist, thinking a little outside the square. I think my rheumatologist is very "text book" oriented in his method of diagnosis. I had hoped the methotrexate would have improved the weakness in ankles and wrists, but perhaps it is just a bit early.

     
    Old 08-10-2013, 03:11 AM   #22
    VeeJ
    Senior Veteran
    (female)
     
    Join Date: Feb 2004
    Posts: 5,711
    VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
    Re: Undiagnosed Auto-immune

    Hi. Yes, there is a genetic subtype associated with ankolysing spondylitis. I remember seeing it while helping a friend with degenerative back problems do his research. (He tested negative & was later diagnosed with degenerative disc disease and spinal stenosis.)

    I'd mention the recurring chest rash (can't hurt). I've seen pictures of "tumid lupus" that may or may not be in the ballpark (only a doctor could say).

    I was an atypical lupus presentation who stumped my suburban doctors for years ("wrong" rash and "wrong" lab results). My theory is that atypical patients should try the largest urban medical centers in visiting range... because "the law of large numbers" means urban centers are more likely to see atypical presentations. So I'm glad your GP is thinking outside the box. Let us know what you find out. Hang in there, V.

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 03:43 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!