Julie Rehmeyer's 'Through the Shadowlands'
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Paraneoplastic redux- calling anciendaze and gingerrgirl

Discussion in 'General ME/CFS Discussion' started by Pyr2, May 1, 2016.

  1. Pyr2

    Pyr2

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    Ginger- I noticed that in the past month or so you have gone down this path. I am not certain of the outcome but looks like you are on IVIG after some positive autobody tests? Anciendaze you seemed to have some good knowledge about paraneoplastic

    I have had a complex neuro history. I was tested on the Mayo paraneoplastic panel in Nov and was negative. Since that time and declining function, my neuro redid some of the tests and I came back "FLOURESENCE NOTED" to onconeural antibodies Anti Ri, Anti Yo and Anti Hu. However, these were not confirmed on western blot.

    To make matters worse, in the course of a spinal MRI a few weeks back, they picked up on a pelvic mass. A pelvic MRI was done after and they cannot tell whether the ovarian cyst is benign or cancerous. So of course, I am now convinced it is indeed cancerous after my reaction to this onconeural antibodies.

    Does anyone know WHAT ELSE can cross reactive with these tests or what can cause flouresence but ultimately a negative western blot? I have to say I feel TERRIBLE, worse than I ever have. I burn if you press on me, I am exhausted, have no appetite, headaches, cranial issues, and feel like Im dying inside. Cognitively declining too. They are also doing a lumbar puncture suspecting possible encephalitis. This is all turning too slow for me. I just want a PET scan to give me some peace of mind and this cyst out of me.

    I have an oncologist appt this week and another next week. 2.5 years of this. I can't believe I didn't push for a full body scan earlier.

    I do have anticardiolipin antibodies and a low positive ANA (and low serum complements c3 and c4). I am wondering if any of that could cross react with the IFA panel. Although if there is no tumor, how do we take care of the neuro symptoms? Im so scared and confused.....
    L
     
    Gingergrrl likes this.
  2. anciendaze

    anciendaze Senior Member

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    Pyr2, I really hope you have a better resource than me. I am busy learning as I go.

    The possible reactions which are not confirmed on western blot probably mean concentrations are still low, with actual cancer they tend to shoot up quickly. I've had to readjust my thinking about paraneoplastic syndromes since I learned of patients who have had wild effects due to the syndrome without ever having the cancer. What apparently happens is that your immune system has found something that sets off a kind of tripwire as if it were ovarian cancer. In the book The Girl On the Sixth Floor I learned about a patient who had such a response caused by antibodies to NMDA receptors. Ovarian cancer is one possible cause, but she did not have it.

    You need to realize that ovarian cysts are not at all rare, and while they can make people miserable and need to be removed they are not always cancerous. If pathologists have to work to tell when they have actual samples in front of them you can understand how immune response can have a false trigger. This also happened to a friend of mine, though she did not have the wild problems of the girl above. She also had problems with her liver and pancreas that were likely due to some kind of autoimmune response that was never tracked down. For a while it looked like there was an invasive cancer, which was not true. She was however miserable and scared until the surgery was over and the pathology results said she did not have cancer. This probably happens more often than finding cancer. We never did figure out what went wrong with her liver, but the problem went away.
     
  3. Pyr2

    Pyr2

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    Anciendaze! Thank you for responding. Honestly, my neuros keep saying "its negative" but I don't accept that with continuing neurological symptoms that are very much paraneo in nature (headaches, seizures, psychological issues, insomnia, movement disorders in the facial region, burning pains, etc). I was entirely healthy 2.5 yrs ago and this came out the blue. My psychiatrist actually wrote to a local autoimmune neurology unit at a teaching university in hopes of getting me evaluated. Look, no one wants ovarian cancer. ITs a baddie. But the way Ive been feeling for 2.5 years neuro-wise has been so horrific that to have it explained and potentially cured by taking a tumor out is not outside the realm of my hopes and wishes. THATs pretty desperate. I do not believe my cyst is NMDA related b/c it has no features of a teratoma. I did not read the girl on the 6th floor but I did read Brain on Fire My Month of Madness- which is very similar. What is your interest in paraneo?

    I am seeing an oncologist in Penn this week and next week going to Sloan Kettering, arguably one of the top three cancer centers in the country. If they can't explain the tests, no one can. I will definitely update.
    Thanks! L
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Hey Pyr2, Sorry I just saw this post and next time, please tag me inside of the thread so I do not miss it. Sadly, I am still not on IVIG or any treatment (long story) but I have not given up pursuing a way to get treatment to reduce the antibodies even though my initial plan fell through. Am now working on Plan B.

    I am now wondering if Mayo has multiple, but similar panels, as I was not tested for all of the things that you listed. I was found to be positive for N-type calcium channel Abs on the PAVAL panel and also for Anti GAD65 Abs which I believe is it's own test.

    I am sorry to hear that and can only imagine what you are feeling. Because of my antibody, I had to get a high resolution lung cat scan b/c the antibody correlates with small cell lung cancer which is very aggressive. My cat scan was negative except for some small nodules and I will need another one in 6-12 months to make sure they have not grown.

    I honestly have no idea and even though at times it may appear that I know a lot about the science of all this, I really do not.

    Am glad you have the appt and that you are not taking no for an answer as you know your body better than anyone. Please, keep me posted here or via PM.

    And really, really hope you have a better source than me LOL as @anciendaze knows a lot more about this than I do!

    I finished reading this book last week and highly recommend it.

    I was healthy 3+ years ago (recovered from severe mono but basically healthy) and now cannot breathe enough to walk without wheelchair. I totally understand where you are coming from.

    Ironically I totally get this as well. Even in the book we spoke about above, which is a true story written by the girl's father, there were moments that they actually prayed that they docs would find pelvic cancer so they could treat it and find an explanation for her PNS. So it does not sound desperate to me and I believe if I could treat the antibodies, it might help my breathing, my autonomic symptoms and maybe even my mast cell symptoms. I just want the opportunity to figure this out as you do and not be left hanging without treatment.

    Absolute best wishes with this and please keep me posted. I wish I was able to be of more help.
     
    Justin30 likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    @Pyr2 Did you go to Sloan Kettering and if so, what happened? Are you okay?
     
  6. Justin30

    Justin30 Senior Member

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    I am sick of how Dr sit back and twiddle their thumbs with certain issues.

    The lack of urgency is pathetic and in difficult situations full evaluations by teams should take place....

    I feel bad for all of us and the Drs that want to help as we along with them spin our fingers trying to figure this out....i said it once and ill say it again...i dont like being a patient Doctor...i want the physician to hear my symptoms, aknowledge test and do their job....exhaustively

    With these autoantibody issues it is no suprise to me as part of ME....

    If you read back in the history of of all this they describe ME as an:

    - an infectous disease
    - an autoimmune disease
    - an ANS, SNS ans CNS disease
    - an endocrine disease
    - a muscoloskeletal disease
    - a cardiac disease
    - a brain disease
    Etc.

    I think this came from the Hummingbird Foundation.

    This is why we need centers of excellence to deal with the mounting problems....using focused based medicine to treat us....

    I am sorry to both of you that have these issues going on....

    If it means anything my life sucks too ATM but I just keep reminding myself if not for me than for all the people in the future we can help...keep fighting for what matters and thats research and treatment...

    I also have hope that we maybe helped as well.....

    Science is moving quickly......and I can almost guarantee their are drigs out their to help us...

    I went through the list of MAB drugs like rituximab and found ines that directly deal with pro and antiinflamitory cytokines....

    Many could be used on us one day but we need these Centers up and going with researchers etc......
     
    Gingergrrl likes this.
  7. Pyr2

    Pyr2

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    I went to Sloan and they primarily focused on the ovarian cyst. They were not sure what to make of the antibodies but were going to talk to their neurologist and get back to me. The surgeon was young and open to suggestions and didn't doubt for a second that something was going on. I also am supposed to have a lumbar puncture done to be sent to UPenn's autoimmune neurology lab. I also have an apptmt with a bone marrow specialist tomorrow b/c I have a deletion in the cells of my bone marrow who knows how that is contributing. Hopefully something will turn up. Its sad when you are at the point where none of it is frightening to you anymore, you would just rather have an answer, almost any answer. Its funny Justin b/c I was just having this convo with my husband, I wish someone would just try SOMETHING - Rituximab, steroids, IVIG, Im willing to be a guinea pig! I am convinced that the immune antibodies have gotten to my brain and are causing all this central random neuro hell- pain, stinging, eyebrows moving, twitching everywhere, face shifts to one side, headaches, eyes burning and pain with movement, pins and needles, fibro pain, muscle exhaustion. I have very low C1q, C3, and C4 complements - so something lupus like and autoimmune - but not lupus itself is going on. Everyone agrees on that so OKAY lets move with that, but no one wants to be the one to push it! And these are MAJOR research institutions.

    So I have the irons in many fires and institutions which I think is pissing off my primary neuro but you know what, thats how it goes. I feel like I am becoming her "problem" patient. I don't mean to be farming myself out but Im declining daily and can't sit back and watch this happen at her shrugging shoulders pace. Ive got a family. Ive got (or had) a life and a career.
     
  8. Pyr2

    Pyr2

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    Oh and the surgeon did say she has seen it a few times in her career where the cyst can have NMDA receptor and have been the cause of all the neuro chaos. My surgery is scheduled for June 9.
     
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  9. Justin30

    Justin30 Senior Member

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    Hi are you refering too NMDA Receptor Autoantibodies?

    Do you also have POTS?

    I get a lot of the pins and needles..and facial twitching and full body teitching that you have including pain
     
  10. PDXhausted

    PDXhausted Senior Member

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    Is your cyst an endometrioma? Did she mean a cyst other than terratoma can cause anti-NMDA receptor antibodies? Or was she referring to terratomas?

    I've wondered this myself- I had a rapid decline after my endometriomas ruptured, and I'm sure it's somehow related to my symptoms. I've asked a couple doctors for the anti-NMDA test but they have blown me off.
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    @Pyr2 you have been constantly in my thoughts and even though our situations are different, I have auto-antibodies and injury to left side of phrenic nerve affecting my breathing and still remains to be seen if any of this is a PNS although lung cancer ruled out which is #1 type of cancer matching my antibody.

    Am waiting for some other test results to come back and no longer afraid and actually WANT them to find the missing link so I can get treatment. Like you, I am at the point that I would do RTX, IVIG, or other treatments in a heartbeat that I would not have even considered a year ago.

    Am praying for both of us that this gets solved and my husband, parents, and one doctor will do anything to help me but still trying to get a local doctor on board and repair brutal damage that another doctor did to my medical record.

    Please keep fighting and I will too. My internet access is off & on until I am back home in approx one week.
     
  12. Pyr2

    Pyr2

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    Well from the MRI it is clearly not an endometrioma and does not appear to be dermoid teratoma (darn) but she says sometimes they are microscopic and too small to be seen. My MRI was equivocal on malignancy - said it could not be
    "ruled out." Unfortunately, ovarian cancer could also cause NMDA as well as anti yo, anti Ri and anti HU, which were the latter three antibodies I screened as positive for.... but then neg on western blot. THey are checking CSF b/c its more sensitive than blood. The surgeon says it has to come out b/c again, until they do pathology while you are on the table (which they literally do right then and there while you are under at these giant cancer hospitals) they can't say exactly what it is.

    If they are blowing you off about NMDA its probably b/c it usually presents very acutely and with almost total memory loss, etc. (If you read Brain on Fire my Month of Madness you know what I mean) I doubt mine is NMDA it would be a longshot, but there are stories out there of milder cases. There are ton of other antibodies out there and I shudder to think all the people potentially here on this board and in mental institutions or wherever that are suffering unknown.
     
  13. Pyr2

    Pyr2

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    OH and I did have an abdominal, pelvic and CT scan of the chest just to check for anything else besides the cyst and they found nothing. Which is guess is good or bad depending on how you look at it :)) Would be great to catch something super tiny super early and be done with this nonsense.

    @Gingergrrl you are even more positive than I am - in the sense that I only screened positive and they can't find my exact antibody -- you know what you are dealing with so you can be totally on top of this and really, they should be bending over backwards for you- you are confirmed. If you lived near Philly (where are u?), the Autoimmune Neurology Center at UPENN would take you because you are confirmed - they will not take me b.c I am too nonspecific (yet). That was started by the famous Dr. Josef Dalmau who found a lot of these antibodies. They are THE center. You should send your records and take a trip.

    L
     
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  14. Pyr2

    Pyr2

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    Oh and @Justin30, I do not think I have POTS. I did a Tilt and was fine. However, I definitely have some sympathetic nervous system dysfunction for sure.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    @Pyr2 it would appear that way but the doctor who found the auto-antibodies has done a 180 and saying my case is "psychosomatic" which all the docs who know me think it insane. It is complicated and not prudent for me to say more on public board. I just bookmarked your post re: the autoimmune neuro center in Philly but I am on the opposite side of the country and have a place I can get treatment, it is just about 6-7 hrs away. But this will probably be what I end up doing.

    ETA: I just googled and found the center you are talking about and it seems focused on anti NMDA and brain auto-antibodies which I don't think pertain to my case. I have rare antibody that attacks the calcium channels plus 3-4 other more common autoantibodies and they affect my breathing very severely plus upper body weakness, POTS, etc. no cancer has been found (checked lungs, thyroid, thymus and tonsils/throat) but have not checked anything lower body.
     
    Last edited: May 11, 2016
  16. PDXhausted

    PDXhausted Senior Member

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    @Pyr2 thank you for the information. I hope your surgery goes well and that really helps you.

    Yeah, it's the "mild" cases that I wonder about. I too doubt that I have nmda, but there is obviously something weird going on with my hormones and cysts. Mine were clearly endometriomas on MRI so probably different than what you're going through. I ended up just having mine drained. But I too wonder if there isn't just a couple of rogue cells somewhere causing chaos. I should get that antibody panel done as well and see if anything comes up for me.
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    @Pyr2 I am not sure if you are still checking PR or if you will see this but I have been thinking about you and wondered if you ended up having the lumbar puncture sent to UPenn's autoimmune neuro lab? I keep hearing about them and am debating contacting them re: my case although it would be impossible for me to fly there and I suspect they would tell me to continue with IVIG and my current treatment path.

    How are you doing now? I am hoping you have been able to rule out cancer and start some treatments. At the time we talked on PR, I had not started any treatments but was able to start IVIG and my third infusion is in about one week. Would love to hear how you are doing if you see this post!
     
    Justin30 likes this.
  18. Justin30

    Justin30 Senior Member

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    I just was reading over this why when these autoantibodies are present and symptom cluster matches a disease do they not, meaning the Drs immediately do a PET scan.

    This seems ludacris. These are urgent matters and need to be taken seriously. The research states early and prompt diagnosis and treatment is neccessary.

    Irregardless god has a plan I believe for all of us.

    I am sorry to here about your fruatrations and struggles it just makes me scratch my head.

    I hope you are getting help now or doing better.

    Justin
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @Justin30 I wanted to let you and others know that I did hear back from Pyr2 earlier today and she is still fighting and advocating to solve this thing. I can't say more without her permission but was very relieved to hear back from her.
     
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  20. Pyr2

    Pyr2

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    Hi everyone, @Justin30, @Gingergrrl, thank you so much for thinking about me. I did reply to a convo with Ginger yesterday.

    I switched doctors and went to see a neuro in NYC who came highly recommended as being a great diagnostician with over 30 yrs experience at a major teaching university. He was pretty sharp - he diagnosed me upon exam with an immune/inflammatory neuropathy and then immediately did a battery of tests - including nerve and muscle biopsy, EMG, lumbar puncture, SPECT and body PET scan and repeat brain MRI. (so in his defense, some drs do take these antibododies seriously)!) Indeed, the EMG and nerve biopsy showed a neuropathy called CIDP, showed my immune system attacking my nerves. He was able to get me 3 months of IVIG.

    One of the test results from the spinal fluid showed oligoclonal bands in my central nervous system. These are present in a lot of people with MS, but I dont have MS. Oligoclonal bands show that your body is mounting an immune or inflammatory response to something, some antigen. He is treating me with a PICC line tomorrow for a month of Lyme exposure, b/c I do show reactivity, but in my heart I just don't feel its that.

    The PET scan was clean but did show calcified lymph nodes with granuloma which a pulmonolgist said is "highly suspicious" of old sarcoid, so its possible that I had sarcoidosis at some point and that is responsible for my neuro symptoms.

    I just feel like something else is being overlooked. Its too long to really go into, but I have bleeding spots on my brain which are unusual for my age and I wonder if something is in the vessels up there -- honestly, all of my symptoms -- headaches, seizures (when this started 3 yrs ago), anxiety, cranial neuropathies, are all CNS lymphoma type symptoms - my dr actually called me "neurotic" b/c it would be like one in a million where the brain mri doesn't show it, but still Im worried. I had a bone marrow biopsy over 15 yrs ago which showed a deletion consistent with lymphoma - at they time they told me to "put it out of my mind." I also had a polyclonal increase of IgM in my blood for years showing some over exuberant B cell response. Since then not one dr has been able to explain what that meant especially in light of escalating neuro symptoms. This new neuro thinks I have some underlying post infectious or rheumatic condition that has attacked my cranial nerves. The IVIG has not helped my CNS symptoms, i doubt the month of antibiotics will, and Im just scared. I told Ginger that Im going to see an neurooncologist in mid October - I thank God that I was able to get an appointment with him, usually you need a diagnosis first. I need someone who has knowledge of both ends of this - I just need to put this to rest. Its been 3 years. If I can just hold on another 6 weeks...

    I think having oligoclonal bands is unusual in ME, but Im not sure where to post anymore so I just continue to lurk on this board! As far as I am concerned we are still all in the limboland of the undiagnosed, and yes Justin, its all in God's hands and He has a plan for us. I have struggled with that in the past few months especially with the fact that me being sick just might be God's will and that its for His glory and my good. It so hard when you have children. I just want to get better and watch my kids grow and stop the endless drs appointments. If I didn't feel on such a downhill course I might be more positive. Its been terrifying for me. I almost wish all the tests were negative. Being told you have an inflammatory condition of your CNS without a name is very very scary.... I know these symptoms are not normal.

    I hope you are doing well..... so sorry this was such a debbie downer.
     
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