Elevated ANA and chiari

[Stephiec79]

Hi everyone. I got some bloodwork results back today. I guess my ANA was positive, but it's non-specific and in a speckled pattern (whatever that means). My question is: is there any correlation between auto-immune markers and chiari?
Thank you!
Steph

[n40066]

yep!  most of us have one auto immune isorder or another...actually, most of us have multiple!

[selmaS]

Hi, most definitely!!

Many have RA which  is auto immune...Hashimoto's thyroiditis is also common among chiarians which is also auto immune....

Some also deal with connective tissue conditions as well like Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.

"selma"

[selmaS]

What are autoimmune disorders?
Autoimmune disorders are diseases caused by the body producing an inappropriate immune response against its own tissues. Sometimes the immune system will cease to recognize one or more of the body's normal constituents as "self" and will create autoantibodies – antibodies that attack its own cells, tissues, and/or organs. This causes inflammation and damage and it leads to autoimmune disorders.

The cause of autoimmune diseases is unknown, but it appears that there is an inherited predisposition to develop autoimmune disease in many cases. In a few types of autoimmune disease (such as rheumatic fever), a bacteria or virus triggers an immune response, and the antibodies or T-cells attack normal cells because they have some part of their structure that resembles a part of the structure of the infecting microorganism.

Autoimmune disorders fall into two general types: those that damage many organs (systemic autoimmune diseases) and those where only a single organ or tissue is directly damaged by the autoimmune process (localized). However, the distinctions become blurred as the effect of localized autoimmune disorders frequently extends beyond the targeted tissues, indirectly affecting other body organs and systems. Some of the most common types of autoimmune disorders include:

Systemic Autoimmune Diseases

Rheumatoid arthritis (RA) and Juvenile RA (JRA) (joints; less commonly lung, skin)
Lupus [Systemic Lupus Erythematosus] (skin, joints, kidneys, heart, brain, red blood cells, other)
Scleroderma (skin, intestine, less commonly lung)
Sjögren's syndrome (salivary glands, tear glands, joints)
Goodpasture's syndrome (lungs, kidneys)
Wegener's granulomatosis (blood vessels, sinuses, lungs, kidneys)
Polymyalgia Rheumatica (large muscle groups)
Guillain-Barre syndrome (nervous system)
Localized Autoimmune Diseases

Type 1 Diabetes Mellitus (pancreas islets)
Hashimoto's thyroiditis, Graves' disease (thyroid)
Celiac disease, Crohn's disease, Ulcerative colitis (GI tract)
Multiple sclerosis (There is still some debate as to whether MS is an autoimmune disease.)
Addison's disease (adrenal)
Primary biliary cirrhosis, Sclerosing cholangitis, Autoimmune hepatitis (liver)
Temporal Arteritis / Giant Cell Arteritis (arteries of the head and neck)

Many of us even after getting our Chiari dx, we r tested for many of the conditions on the above list to rule them out as symptoms r the same  if not similar in how it affects the person .

[LisaM46]

Here's a kicker... about 11 years ago, I had human parvovirus b19.  It completely hijacked my blood work!  I tested (false) positive for double stranded dna, positive for ana's, I produced antigens for CREST, scleroderma, Sjogren's, MCTD, and for about nine months, they were thinking I had lupus.   (I could pull the paperwork, but speckled, blah, blah, blah... I was very freaked out!)

Anyway, finally, just about three years ago, my blood panel came back CLEAN!  Negative for everything.  So - maybe a virus for you?  Can you ask to be checked for human parvovirus b19? (man... when I first had it, I had so much joint pain, I was certain I had bone cancer!)  In children, it's called Fifths Disease, and is usually benign then.

Lisa

[LOUGIE]

I HAVE SOMETHING THAT CANNOT AND HAS NOT BEEN DIAGNOSED AFTER 35 DOCTORS AND BIOPSIES,AND ENOUGH BLOOD DRAWN TO FLOAT A BOAT. THEY FINALLY DIAGNOSED ME WITH DISCOID LUPUS ONLY BECAUSE THEY SIMPLY DID NOT KNOW WHAT ELSE TO DO. I HAVE HAD SHOTS IN EVERY JOINT IN MY BODY I THINK, WITH SOME RELIEF FOR VERY SHORT PERIODS OF TIME. I AM TRYING TO GET INTO MAYO, IN ROCHESTER, MINN. JUST WAITING FOR THEM TO CALL FOR MY APPOINTMENT. MY ELDEST DAUGHTER HAS THE SAME SYMPTOMS AS ME. MY YOUNGEST DAUGHTER IS NOW BEING TESTED FOR CHIARI DISEASE. I HAVE HAD THIS SINCE 1989 WITH REALLY NO HELP FOR LONG PERIODS OF TIME JUST PAIN MEDS. I HAVE BEEN CALLED EVERYTHING IN THE BOOK, DOCTORS HAVE TOLD ME I AM CRAZ

[selmaS]

  Hi and welcome to the Chiari forum,.

I know it is frustrating to get a Chiari DX as there are more of us with it then there are Drs that know and understand it.

Have u had a MRI of ur brain and cervical spine? That is where u need to start and get copies of ALL testing including the reports so u can more easily go for other opinions.

[desertstorm2009]

Hi Steph...
I had an elevated ANA and was diagnosed with RA twelve years ago. Later my ANA was normal. My belief is that most of the symptoms I have suffered with have been related to my Chiari. May not be what you wanted to hear, I didn't want to hear it either and still don't. I hope you solve the pieces to your puzzle soon. Good luck :-) Lisa

[LOUGIE]

I have about every test in the book. CT; MRI, PET.
, I have pos.ana titer extremely elevated as well as a esr which was 60. extremely high. I get elief from pain meds that have codeine in them but drs. are so skeptical about giving u those meds. I take gabapentin, savella,paxil, warfarin (had blood clot in my leg) 2 yrs. ago, lung cancer last year, had wedge section removed, not over that yet. As I am posting this I feel like I have polio. Sounds silly to say that but my legs hurt so bad I can hardly walk. I am an old country girl, worked hard all my life, and still do when I can, and sometimes I just push myself to the limit. I just want to find out what I have so maybe my girls will get the proper treatments. thanks for your post Selma S. I sure can use any help I can get. Its so bad to feel so embarrased  to even ask for pain meds. bcause they must answer to FDA for everything due to druggies abuse. what is a person to do? My GP is very good, but won't really listen to me I think she doesn't know what to do with me. My rheum. is the one that is sending me to Mayo, bcause she said it was beyond her realm of capabilities. I am desparite for help. sorry bout my spelling.

[LOUGIE]

Hi Selma,
You sound like you are well educated in this area. Yes I had an MRI of my brain at least a couple of times. One time they said they saw a small spot but said it wasn't anything to worry about. I'm sure they will do one when I go to Mayo, so I am just biding my time. My goal is to live long enough to find out what I have so it will help my daughter's and/or my grandchildren if God forbid they have something like this. If u have any additional info. I would appreciate your input.

[selmaS]

  Hi....well my first suggestion would be to get copies of ALL testing u have had so far, MRI's blood panels etc along with reports...so many times things can be missed or overlooked as an incidental finding.

It is awful that we have to educate ourselves in order to get the proper care but we do....some Drs do not like it and I say tuff.....we need to be aware of the right care and to know enuff we have the right Dr too.

A small spot or lesion  could be nething, could indicate u have really bad headaches....u need a copy of the report and MRI and take a look at everything and try to see what symptoms u have and get a Dr to listen, it took me yrs to get my DX .....

Another thing is to look to ur family 's medical history as it could have clues and indications ur Drs are missing....I thought I had all the info on my family and not until I  got a few diff DX's did I learn more about my family so do dig there for more info.

[LOUGIE]

Selma,
Thank you for replying to me. I have had just about every test you can think of at one time or another. I am so frustrated. I am trying to get an appointment at Mayo in Rochester, but Rheum. has rejected me, so my PCP is in the process of requesting that I be seen by Internal Med. for evaluation. I simply don't know what or where I will turn if I get rejected again. My ANA was extremely high as well as my ESR but my ANA was non specific so therefore the Drs. here in Ark, and TN. don't know what to do with me. My daughters are having symptoms that are exactly my mine. If anyone could help me I will be eternally grateful.  Thank U

[selmaS]

  Hi....I know there is a Chiari specialist in TN.....not sure who u r seeing....but do take a look at the list of Drs we have in the Health Pages....use it to research Drs.....I have no idea if the Dr listed will rule out ALL related conditions, but I know quite a few members have been to him and liked him.

As for the ANA and ESR levels, so many of us do have auto immune and  connective tissue disorders which may affect these levels.

Ur PCP may be able to send u to a endo to see if u have ne issues there with auto immune thyroid conditions like Hashimoto's.

[Noted_Touch]

I have just been diagnosed with Chiari yesterday after taking a full body MRI.  My symptoms were varied - including periods where I am unable to walk.  I did have  a high levels of Uric acid - one year ago - which we attributed  to gout  my not walking - and another occasion with the swelling of my wrist - which we also attributed to gout..  I was diagnosed and treated for Cervical Plexopathy in 2001 and it is shocking to discover at this point that I have Chiari which may have been the same diagnosis for Cervical Plexopathy.  I thought I had varicose veins because symptoms of my not being able to put down my legs after playing the organ for extended period seemed to indicate vein problems - but there are no evidence of protruding veins.  Support hose does help the pain in my legs though.  I have diffused disc bulges from between all my vertebrae from C-2 to C-6.  I am very concerned.  What should I do since this diagnosis.  I will be looking for suggestions.  I suffer from chronic headaches and mayo-facial pain.  

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask how they arrived at ur Cervical Plexopathy DX? What testing was done? If u had a MRI, request a copy of it as it may show ur Chiari on it and ur Drs now will be able to compare. Plus, always ask for copies and reports of ALL testing...MRI,CTs, and blood panels.....it will help u know what is going on and able to go for a 2nd opinion more readily as u will not have to wait for a copy. Drs will charge for a copy of ur medical info, so get it on ur own from the facility that does the study, they will supply u with it at no xtra charge.

I would strongly suggest u get checked for related conditions especially POTS and ehlers-danlos....since u mention a circulation type issue and u have bulging disks...both conditions could be at play. U should have ALL related and non related conditions ruled out, and take ur time to find a NS as not all NS;s are well informed and experienced to do the decompression surgery for Chiari.

We do have a list of Drs in the Health Pages for u to use to research them, the list is not meant to be a referral nor an endorsement.

I hope u find this helpful.

[Noted_Touch]

Thank you for your kind and thorough response to my post.  It is indeed comforting to find persons who know about Chiari and its related illnesses.  Yesterday was the first time that I had ever heard about the term or such a diagnosis.  

As per my diagnosis of Cervical Plexopathy.  This was done at Jackson Memorial Hospital and I have copies of the film and reports of MRI's that were completed in The Bahamas prior to my diagnosis - where the neurologist only said I had a pinched nerve and months later when I could not walk or think coherently because he had given me a drug in which I had a reaction to, I was diagnosed with Cervical Plexopathy.  I was told that both my previous MRI (2000) and the 2001) showed Cervical Plexopathy.  I received epidurals to alleviate the pain for the Cervical Plexopathy.  

I am a 'reseacher' - so I have all data related to my illness for the past two decades.  Now, what do I do from here?  How to I get the help that I need to cope and to screen for other correlated illnesses and complications?  I really need to walk through this with support.  I really appreciate all the help that I can get.

Kind regards.  

[selmaS]

  Unfortunately I am not aware of Chiari specialists in ur area....and what and whom u need is a true Chiari specialist......

We do have a list of Drs that the members here have been to and liked and we have one for the US, UK, Canada,Australia....but I know we do not have a  Dr in the Bahamas,....http://www.medhelp.org/health_pages/list?cid=186

U may be able to find one here that will consult with ur Drs there...it is worth a try. Please be advised the list of Drs is not a referral nor an endorsement...just a means as a starting place to research Drs.

Mayb u will start a list of Drs in the Bahamas?

[Noted_Touch]

My internist is doing some research too and I know that together with this forum, I can create and collate resources for my area.  Just getting adjusted to the idea that "I have something" and I have to cope with it.  This is indeed a beginning for me.  Having been suffering for two decades and finally finding some resolution  - or a route to some type of resolution - is consolation enough for me today - maybe not tomorrow.  

[selmaS]

  I know just how u feel, just a validation that yes u have something and u were not going off the dock...lol...

And it is interesting just how many feel the same way after a long search.

hang in there and keep us posted

[Noted_Touch]

I must also note that my blood work revealed a positive ANA and it appears to be an indicated for a form or low- level lupus.  With Chiari, I wonder how complicated my life will be now.

[selmaS]

  Believe it or not I have been told I am borderline for Lupus....and  that is the reason I was sent in for more testing after a drop attack....as I required surgery on my knee and ankle after the fall and my knee surgeon sent me to a rheumatoid Dr and he was ruling lymes, MS and lupus out when they found Chiari....but they also found EDS, tethered cord, and Hashimoto's///

[Noted_Touch]

I am back again... Of course, I feel sad because my doctor also told me that my ANA markers indicate lupus or something in that family.  My mind is so boggled by all of these details, Chiari, lupus, dry eyes, digestion problems, incontinence in many spheres, seeming to be fluid in my foot - (joint inflammation), neck pain, eye pain, headaches, and a myriad of other medical problems that come and go... My husband is telling me that because I have faith, I should not feel 'sad' but embrace each moment.  Another friend is telling me something similar, but I feel sad and I want to cry! (smile) Adult as I am, this whole situation of being diagnosed with something that I don't really understand pushes me to a 'faith level' that has dimensions that I've never delved into!  (smile)  I have to collate everything and then in some way - allow something greater than myself - help me to deal with the resources that are available.  Your advice here on the forum is assisting me in dealing with what questions I have to ask my support team and what resources I must gather to better help myself.  Thanks to all!  

[Noted_Touch]

So, no matter what the diagnosis - it may be multiple (correlated) diseases or conditions.. (smile) . Is that the plight we're deemed with (smile)?  Things could be significantly worse - I assume!  (smile)
I am here just taking it all in... So, you didn't have lupus in the end SeimaS?  

[selmaS]

  Hi....so far no lupus.....and yes, I know how overwhelming this all can be as the Drs give us a new DX for each symptom...BUT some of the symptoms are Chiari related especially those that come and go as that is typical of Chiari as it cycles....it can be days , weeks months or yrs....and Chiari can affect everything within our body....as it is affecting the spinal cord...

And yes it is possible to have several conditions at once...I do have several...and they are related to Chiari.

[Noted_Touch]

I'm finally able to get back - as my life seems even busier on the weekend.  (smile)  You're saying that we usually have several diagnosis and most of these diagnosis are related to Chiari.  (sounds like me - with that)... (smile)  Can some folks share some of the things (situations) they have found themselves in since diagnosis?  Thanks