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  • Does this sound autoimmune? Any thoughts?

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    Old 10-20-2018, 12:10 AM   #1
    jclea
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    Does this sound autoimmune? Any thoughts?

    Hi there,

    Iíve had an odd constellation of symptoms lately that my doctor canít seem to figure out. I was wondering if anyone out there had any thoughts or similar experiences.

    Iíve had intermittent joint pain since early childhood but was always told that was ďgrowing painsĒ. There was never any obvious swelling so other than an X-ray no testing was done and this was eventually attributed to my being overweight. I could understand that but I did always wonder why it started when I was so young, and not overweight at the time. The joint pain continued into adulthood but was manageable with Motrin so I never pushed the issue with my physician. About 3 months ago the joint pain became significantly worse, occurred with greater frequency, and began to involve my hips, shoulders, hands, and even elbows at times. I also developed overwhelming fatigue. I was exhausted all the time. There were times I had to force myself out of bed to even eat something and I often felt like I was too tired to even chew. Iíd never experienced anything like it. My doctor ran a few labs including a CBC with differential, CRP, ESR, and checked for Lyme because I live in a high risk area. Lyme came back negative. CBC showed WBC of 12.4 with high neutrophils. The CRP was slightly elevated at 15.9 and ESR was elevated at 31. It wasnít clear what was going on but we decided a wait and see approach was best. Two weeks later I developed a peri rectal abscess which required an I&D under anesthesia and 3 days of IV antibiotics. My WBC count at that time were 19.6 again with high neutrophils. The wound healed without issue and the area was showing no signs of infection however 2 weeks post op I was still having low grade fevers and my WBC count remained elevated at 13. My doctors said it would likely just take time to recover from the infection but they did start another course of antibiotics. 2 weeks later my WBC count was still above 13 and my CRP was 15.9. It has now been 2 months since the infection and operation and Iím still having the same joint aches and overwhelming fatigue. They seem to be getting worse and not better. My white count is still high (13.8) as is my CRP (mildly high). I had an ANA done and it came back negative.

    I just donít feel right and I canít figure it out. I keep catching colds which is abnormal for me because I hardly ever got sick before. Iíve always had GI issues which were worked up and deemed IBS and solitary rectal ulcer syndrome. Those symptoms have been more troubling lately as well.

    My PCP referred me to a rheumatologist however I wonít be able to get in to see her until January. My doctor is very amenable to ordering any lab tests I think might help but I really donít have any experience with this stuff. If anyone has any recommendations in terms of lab work or testing it would be greatly appreciated. Iíd like to get as much as I can done before January 1st since Iíve met my insurance out of pocket max for the year and it would all be covered at this point.

    Sorry for the length and thanks for taking the time to read this!!

     
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    Old 10-20-2018, 10:20 AM   #2
    quincy
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    Re: Does this sound autoimmune? Any thoughts?

    Hi...sounds like it to me.....got to love those growing pains!

    I suggest you have an AMA, rheumatoid factor, M3 and M4 to start (but I'll check out my other test results from the rheumatologist later and get back to you) . You sound a lot like me, except I have UC. As well, I have Primary Biliary Cholangitis, asthma, and now Sjogrens.

    Apparently, I dont have a primary disease connection to the Sjogren's....usually, it's Rheumatoid Arthritis or Lupus. She thought that was interesting. The lip biopsy came back positive.

    Hang tough through this process....I saw a rheumatologist years ago, and she was useless. Thankfully, this one did testing specific for Sjogrens based on my eye and nose issues (and my sister has it), plus I have PBC.

    q
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    Old 10-20-2018, 12:22 PM   #3
    angelofeventide
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    Re: Does this sound autoimmune? Any thoughts?

    Quote:
    Originally Posted by jclea View Post
    Hi there,

    Iíve had an odd constellation of symptoms lately that my doctor canít seem to figure out. I was wondering if anyone out there had any thoughts or similar experiences.

    Iíve had intermittent joint pain since early childhood but was always told that was ďgrowing painsĒ. There was never any obvious swelling so other than an X-ray no testing was done and this was eventually attributed to my being overweight. I could understand that but I did always wonder why it started when I was so young, and not overweight at the time. The joint pain continued into adulthood but was manageable with Motrin so I never pushed the issue with my physician. About 3 months ago the joint pain became significantly worse, occurred with greater frequency, and began to involve my hips, shoulders, hands, and even elbows at times. I also developed overwhelming fatigue. I was exhausted all the time. There were times I had to force myself out of bed to even eat something and I often felt like I was too tired to even chew. Iíd never experienced anything like it. My doctor ran a few labs including a CBC with differential, CRP, ESR, and checked for Lyme because I live in a high risk area. Lyme came back negative. CBC showed WBC of 12.4 with high neutrophils. The CRP was slightly elevated at 15.9 and ESR was elevated at 31. It wasnít clear what was going on but we decided a wait and see approach was best. Two weeks later I developed a peri rectal abscess which required an I&D under anesthesia and 3 days of IV antibiotics. My WBC count at that time were 19.6 again with high neutrophils. The wound healed without issue and the area was showing no signs of infection however 2 weeks post op I was still having low grade fevers and my WBC count remained elevated at 13. My doctors said it would likely just take time to recover from the infection but they did start another course of antibiotics. 2 weeks later my WBC count was still above 13 and my CRP was 15.9. It has now been 2 months since the infection and operation and Iím still having the same joint aches and overwhelming fatigue. They seem to be getting worse and not better. My white count is still high (13.8) as is my CRP (mildly high). I had an ANA done and it came back negative.

    I just donít feel right and I canít figure it out. I keep catching colds which is abnormal for me because I hardly ever got sick before. Iíve always had GI issues which were worked up and deemed IBS and solitary rectal ulcer syndrome. Those symptoms have been more troubling lately as well.

    My PCP referred me to a rheumatologist however I wonít be able to get in to see her until January. My doctor is very amenable to ordering any lab tests I think might help but I really donít have any experience with this stuff. If anyone has any recommendations in terms of lab work or testing it would be greatly appreciated. Iíd like to get as much as I can done before January 1st since Iíve met my insurance out of pocket max for the year and it would all be covered at this point.

    Sorry for the length and thanks for taking the time to read this!!
    Hi. You mentioned being tested for Lyme. I assume they used a regular lab for this. Regular labs have a high false negative rate for Lyme testing. You need to get tested through Igenex Labs, especially since you live in a high Lyme area. They can send you instructions on how to go to a regular lab, have your blood drawn through them and sent to Igenex for proper testing. You will have to pay out of pocket for it, but at least you will have a correct answer through them. Your symptoms sound like Lyme to me. I would know as I have Lyme. Also get tested for Epstein-Barr, Cytomegalovirus and HHV6, all of which can be done through regular labs. Ifmyou can afford it, try to go to a naturopath or functional medicine doctor. They are far more likelynto find the cause of your issues than a regular doctor is. Btw, do you by any chance still have the old Lyme test the gave you? If so, I can look them over and see if anything jumps out, as far as the band values.

     
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    Old 10-20-2018, 07:04 PM   #4
    jclea
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    Re: Does this sound autoimmune? Any thoughts?

    Quote:
    Originally Posted by quincy View Post
    Hi...sounds like it to me.....got to love those growing pains!

    I suggest you have an AMA, rheumatoid factor, M3 and M4 to start (but I'll check out my other test results from the rheumatologist later and get back to you) . You sound a lot like me, except I have UC. As well, I have Primary Biliary Cholangitis, asthma, and now Sjogrens.

    Apparently, I dont have a primary disease connection to the Sjogren's....usually, it's Rheumatoid Arthritis or Lupus. She thought that was interesting. The lip biopsy came back positive.

    Hang tough through this process....I saw a rheumatologist years ago, and she was useless. Thankfully, this one did testing specific for Sjogrens based on my eye and nose issues (and my sister has it), plus I have PBC.

    q
    Wow! Thank you so much this is so helpful. Iíve considered Sjogrens as a possibility for myself because I do have dry eye issues and my mouth is constantly dry regardless of how much water I drink. Itís been commented on by my MD. I also often get painful mouth sores and have had probably 3-4 episodes of oral thrush over the last two years which for a healthy 30 year old is a bit unexpected. I had put it aside thinking it was unlikely because my ANA was negative. Iíll send a message to my doctor about getting those tests ordered. When you said AMA did you mean ANA or is there another test called an AMA? Iím so unfamiliar with all of this!

    Thanks again!

     
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    Old 10-20-2018, 08:10 PM   #5
    MSNik
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    Re: Does this sound autoimmune? Any thoughts?

    Lyme tests done through a standard Western Blot are historically sketchy as far as being right...Lyme is tough to dx unless a specific Lyme lab is testing for it; Igenex is a specialty lab and can help you...but keep in mind that this lab is owned by doctors.

    As far as what labs to order; your doctor knows (or should know) what labs to order for the Rheumy....if not, he or she can call the Rheumy and ask what labs she (or he) wants ordered to be prepared for your visit in January. You might also call the Rheumy office and asked to be put on a cancellation list in case anyone cancels- youll get a call and get in sooner. I just lucked out with a specialty visit to a doctor who couldn't get me in until March...I asked to be called if anyone cancelled, got a call back later that day and got in the very next day! It does work if you know to ask.

    You shouldn't need to ask what tests to be ordered; ask your doctor to find out and order the tests for you. This way, what you will need once you see the Rheumatologist will have already been done.

    Good luck!
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    Old 11-02-2018, 10:34 AM   #6
    quincy
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    Re: Does this sound autoimmune? Any thoughts?

    Hi...so sorry for the late reply....it didn't show up as new.

    AMA is for Primary Biliary Cholangitis. (antimitochondrial antibodies)
    I'm sure I had ANA tested and remember it was negative....but have to look deeper for it.

    I do suggest you request testing for Sjogren's...and that includes a lip salivary gland biopsy. Just because... you are showing symptoms, and it's good to know.

    Please let us know how the process goes.
    q
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    Last edited by quincy; 11-02-2018 at 10:38 AM.

     
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    Old 07-08-2019, 08:53 AM   #7
    6thCranialNerve
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    Re: Does this sound autoimmune? Any thoughts?

    My neurologist has checked me for Lyme x2 with results coming back negative. He checked a friend of his x3 for Lyme and it came back negative the first two times and on the third he hit positive on all markers.

    I would suggest getting checked more than once for Lyme for anyone who has any symptoms. Yours are classic signs of an autoimmune disorder; but finding a neurologist who can correctly diagnose you is key.

    I say this because not all neurologists have all the answers. In my decades old life I have seen doctors treat women like they have emotional disorders when they cannot diagnose a problem. I admitted myself into the ER after having the flu, not eating/drinking for 4+ days, and being out of my mind. They tried to discharge me; but I knew I was sick and refused to leave. They gave me a battery of tests and the only think they found was dehydration and a UTI.

    I was given a psych consult. The doctor left the room rolling her eyes because she knew I wasn't crazy. The hospitalist then ordered an echo cardiogram and they found I was in heart failure. Boy, did the attitudes change! I was treated and recovered over time. (this is exactly what kills people who get the flu, the virus goes into the heart muscle and then the heart fails).

    Don't stop fighting is my offer. Just because they have a credential does not make them alpha/omega.

     
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